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Help ME Circle

Help ME Circle - Jan van Roijen

Om de nieuwsberichten van de Help ME Circle per email te ontvangen, of voor meer informatie over dit initiatief, kunt u een mail sturen naar Jan van Roijen:  j.van.roijen@chello.nl

-----

20 maart 2017

Journal of Translational Medicine

Activin B is a novel biomarker for
chronic fatigue syndrome/myalgic
encephalomyelitis (CFS/ME)
diagnosis: a cross sectional study

http://bit.ly/2n9iuBm

-----

2 december 2016

ME/CFS Test Within 5 Years

$4m grant to aid Chronic Fatigue Syndrome diagnosis

http://bit.ly/2fXK28O

-----

28 november 2016

Trial By Error, Continued: The New FITNET Trial for Kids
By David Tuller, DrPH

http://bit.ly/2fpyVoY

-----

21 november 2016 

Stony Brook School of Medicine

DEPARTMENT OF PSYCHIATRY

Fred Friedberg, PhD, Receives $600,000 NIH Grant to Study Home-Based Self-Management for Chronic Fatigue.

http://bit.ly/2g8cGRP

-----

17 november 2016

Promises, Promises:
Thirty Years of NIH Broken Promises 
by Gabby Klein

http://bit.ly/2fUvS5x

-----

14 november 2016

Professor Malcolm Hooper

A Response to Professor Fred Friedberg’s Editorial about CBT

http://bit.ly/2edIcha

-----

12 november 2016

Time to Stop CBT & GET..!!!

https://www.facebook.com/notes/jan-van-roijen/time-to-stop-cbt-get/10154941452763322

-----

5 november 2016

Nancy Blake

For better or worse...worse, probably, I haven't
made much attempt to be tactful... My Letter to
Koroshetz

http://bit.ly/2frZY09

-----

4 november 2016

Conference Syllabus

A panel of biomarkers accurately
identifies CFS/ME patients and
contributes to the understanding of
the pathophysiology of the disorder

Kenny L. De Meirleir1,2, Tatjana Mijatovic3,
Eugene Bosmans3, Nossa Van den Vonder2,
Vincent Lombardi1

http://bit.ly/2etVRCT

-----

20 oktober 2016

We vote 'no confidence' in MEGA research for M.E. 

http://bit.ly/2emw8Kw

-----

14 oktober 2016

Journal Fatigue: Biomedicine, Health & Behavior

Mortality in patients with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

Stephanie L. McManimen, Andrew R. Devendorf, Abigail A. Brown, Billie C. Moore, James H. Moore & Leonard A. Jason

http://bit.ly/2e5nHDr

-----

8 oktober 2016

QUICK THOUGHTS

One of James C. Coyne's Blogs About The unfolding story of removal of data from a PLOS One article.

http://bit.ly/2dpXu71

-----

1 oktober 2016

theguardian
Friday 30 September 2016

If my team’s research on ME is
rejected, the patients will suffer

http://bit.ly/2dzmC6H

-----

13 september 2016

Viruses and CFS: Statements byRon Davis and Bob Naviaux
September 9, 2016

http://bit.ly/2ck2EgW

-----

3 september 2016

Open Medicine Foundation

Fast-tracking revolutionary research for ME/CFS and related chronic complex diseases

ME/CFS Ground-breaking Metabolomics results by Naviaux RK, et al

http://bit.ly/2bXtjQP

-----

27 juli 2016

ME Patient took his own Life

Tom Jarrett, ME Patient
Advocate, Passes

http://bit.ly/29Y9aL7

-----

24 april 2016

Dr. Speight circulated this letter
on Friday, April 22

Dear friend/supporter

I am sorry to have to tell you of the result of my
hearing before an Interim Orders Tribunal of the
Medical Practitioners Tribunal Service on 20 April
2016.

Most of you will be familiar with the sequence of
events that led up to this case and the current GMC
investigation.

At the hearing, my barrister offered that I should
voluntarily withdraw from all ME related activity
pending further investigation by the GMC.

The panel did not accept this offer, but have imposed
interim conditions on my registration mirroring the
voluntary restrictions I had offered for a period 15
months.

The conditions prevent me from carrying out any work
in relation to ME in either a paid or unpaid capacity.

The IOT Panel concluded that my practice in the field
of ME/CFS may be deficient, and that it was
necessary to impose an interim order for the
protection of members of the public and to maintain
public confidence.

On the positive side, apart from these conditions, the
IOT has not restricted my practice in paediatrics in
general.

The IOT has not made any findings of fact and the
order will be reviewed after 6 months.

The IOT is not the forum in which to challenge the
substance of the complaint made to the GMC.

To those of you who represent charities, I am afraid
that I must with immediate effect withdraw my
services as a medical/paediatric adviser.

I wish you luck in finding someone to fill the gap.

I will direct all patients and families with whom I have
had prior contact back to your charity for advice.

Please also understand that these restrictions even
extend to preventing me speaking or lecturing on the
subject of ME.

To my fellow members of the authoring committee of
the International Consensus report on paediatric
ME/CFS, I am afraid I also have to withdraw from
future contributions.

To my friends in Norway and Germany, I am afraid this
means that I am unable to continue to support the
three families I have already met, either informally or
in legal proceedings.

Thanks for very much for all your support.

Wish me luck

Best Wishes to you all in your continuing struggles to
support patients and families

Nigel Speight
-----
22 april 2016

Reductio ad Absurdum: A
Webinar with Dr. Avi Nath

http://bit.ly/1YKlygB

-----

30 maart 2016

ME is geen SOLK:

Wijzig Gezondheidsraadscommissie
en houd u aan de adviesopdracht

https://meisgeensolk.petities.nl/

-----

30 maart 2016

The PACE Trial did not
go unchallenged for five years

http://bit.ly/1RDbzHV

-----

22 maart 2016

Keep an Eye on Your Walitt: NIH Study Poses
Dramatic Risk to Long-Term Disability Benefits

Posted on March 21, 2016
Jeannette Ketterle Burmeister

http://bit.ly/1LBYyit

-----

9 maart 2016

NIH Obliquely Dismissed
725 Voices While Stating
that Patients' Input Matters

Posted by ME Advocacy Advisory-Group

http://bit.ly/1R6zpyK

-----

5 maart 2016

An Open Letter to Dr.
Collins and Dr. Nath on
the NIH internal ME/CFS
study    

http://bit.ly/1LZSWsX

-----

1 maart 2016

http://bit.ly/1QRv7eh

Has the “Coyne of the Realm” been devalued?

Posted on February 29, 2016 
by Jeannette Burmeister

-----

19 februari 2016

The CDC Grand Rounds regarding "ME/CFS" 
is now on youtube.

By Maryann Spurgin

And the biggest IDIOT award goes to 
Dr. Charles Lapp.

Here was my very polite public comment. There is
a link at the youtube site where you can
comment.

Charles Lapp made many mistakes and gave false
information at this conference on "ME/CFS."

The disease is not helped by tryciclic anti-
depressants used for sleep.

As a disease that affects the heart, these drugs 
can and have triggered severe and fatal cardiac 
events such as angina and arrythmias.

Other, safer drugs are used for sleep such as
benzodiazapines.

Further, it was wrong for him to say that a 
diagnosis of "CFS" early on is a good thing to 
prevent expensive tests to rule out other 
disorders.

MS, treatable bacterial sinus infections, Addison's
disease, and many other treatable conditions
SHOULD be ruled out.

Further, studies showing that graded excercise is
helpful have been decimated and debunked.

Dr. Lapp seems to have no understanding 
whatsoever of this condition.

I suggest that you use better clinicians such as 
Dr Cheney or Dr Bell.

Further, the talk left out an important feature 
of the disease:

Circulatory impairment. Poor vascular delivery of
nutrients due to RBC disorders, low blood volume,
and cardiac diastolic dysfunction are important
aspects of the disease that were not even
mentioned.

For more information please see my website:
http://bit.ly/1DHG4aR

Chronic Fatigue Syndrome: Advancing
Research and Clinical Education Doctors and
scientists have not yet found what causes
chronic fatigue syndrome. Infections and….

YOUTUBE.COM:
https://www.youtube.com/watch?v=0SnJy5AOSd8

-----

11 februari 2016

Thank you for signing MEadvocacy's Petition

Jan --

Thank you for signing petition for the NIH/CDC:

Stop the CFS Study Using Reeves Definition &
Cancel the Study’s Presentation at the Feb. 16th
CDC Grand Round.

Please forward this email on to others who may want to
sign.

Mary Ann Kindel, MEadvocacy.org
http://www.meadvocacy.org/

-----

10 februari 2016

NIH/CDC: Stop the CFS Study
Using Reeves Definition &
Cancel the Study’s Presentation
at the Feb. 16th CDC Grand
Round

http://bit.ly/1QqeT5G

-----

10 februari 2016

NIH Clinical Study: A Case of
Continued Institutional Bias

http://bit.ly/1QpSyVR

-----

3 februari 2016

Introducing Mary
Dimmock's Summary:
'Thirty Years of Disdain'

Posted by Gabby Klein

http://bit.ly/1PxG5TD

-----

6 januari 2016

Trial By Error, Continued: Questions
for Dr. White and his PACE Colleagues

By David Tuller, DrPH

http://bit.ly/1OvvYyl

-----

1 januari 2016

Home - What is M.E.?

1 million Americans and 17 million worldwide
affected by one of the most disabling diseases
ever...
 
“One of the last major diseases we know
nothing about”

(Ronald W. Davis, PhD, Stanford University / Open 
Medicine Institute)
 
Myalgic encephalomyelitis (ME), is a complex
disease involving profound dysregulation of the
central nervous system (CNS) and immune system,
dysfunction of cellular energy metabolism and ion
transport as well as cardiovascular abnormalities.
The disease affects people of all ages, genders, races
and economic levels.

Full text:  http://www.meadvocacy.org/

-----

22 december 2015

MEadvocacy Statement Regarding the
Creation of the US Action Working Group

Posted by Gabby Klein

http://bit.ly/1U3EyEk

-----

18 december 2015

David Tuller responds
to the PACE investigators

http://bit.ly/1ObdXqA

-----

12 december 2015

Our Two Minutes of Fame:

Collins talks about ME/CFS
on Charlie Rose

http://bit.ly/1Q8xKrf

-----

11 december 2015

Extended B-cell phenotype
in patients with Myalgic
Encephalomyelitis/Chronic
Fatigue Syndrome: A
cross-sectional study.    

http://1.usa.gov/1jREwDf

-----

9 december 2015

Fatigue in adults with post-infectious
fatigue syndrome: a qualitative
content analysis

Eva Stormorken, Leonard A. Jason and
Marit Kirkevold

http://bit.ly/1lu64jP

-----

3 december 2015

ME
advocacy

Why MEAdvocacy Does Not Applaud
the News from NIH...Yet

http://bit.ly/1LP31HH

-----

1 december 2015

Cytokine

Reductions in circulating levels of
IL-16, IL-7 and VEGF-A in myalgic
encephalomyelitis/chronic fatigue
syndrome

Abdolamir Landia, David Broadhurstb,
Suzanne D. Vernonc, D. Lorne J. Tyrrella,
Michael Houghtona,

http://bit.ly/1IvjS26

-----

29 november 2015

Myalgic encephalomyelitis,
chronic fatigue syndrome:
An infectious disease

R.A. Underhill

http://bit.ly/1lM0KrD

-----

20 november 2015

Trial by error, Continued:

PACE Team’s Work for
Insurance Companies Is
“Not Related” to PACE.
Really?

By David Tuller, DrPH.

http://bit.ly/1NbgFMv

-----

15 november 2015

To The Editor of the Lancet –
The PACE Trial

http://bit.ly/1kxm4kv

-----

13 november 2015

An open letter to 
Dr. Richard Horton 
and The Lancet

http://bit.ly/1OINRLk

-----

3 november 2015

Serum Immune Proteins in
Moderate and Severe Chronic
Fatigue Syndrome/Myalgic
Encephalomyelitis Patients.

Hardcastle SL1, Brenu EW1, Johnston S1,
Nguyen T1, Huth T1, Ramos S1, Staines
D1, Marshall-Gradisnik S1.

http://1.usa.gov/1k31zMn

-----

31 oktober 2015

[] 

Google translation from German 

By Katharina Voss

No reason for enthusiasm that NIH
takes action to bolster research on
Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome.

Including leaders from NINDS
(National Institute of Neurological
Disorders and Stroke) doesn`t mean
that they plan to research ME.

They "will design a clinical study in
the NIH Clinical Center with plans to
enroll individuals who developed
fatigue following a rapid onset of
symptoms suggestive of an acute
infection."

Hear hear! They plan to study patients
with FATIGUE. It sounds like a
novelty, doesn`t it? - Wink-emoticon.

But unfortunately patients with ME
don`t suffer from fatigue. Not more
than cancer patients for example.

The core symptom of ME is a
pathological muscle fatiguability and
as a consequence of muscle
fatiguability patients with ME suffer
from post exertional neuro immune
exhaustion (PENE).

Thus NIH do not plan to examine
patients with the neurological disease
ME as defined by the several ME
definitions.

And those who applaude NIH should
know that there is not much difference
between neurology and psychiatry.
Today`s psychiatrists and
neurologists often claim that
psychiatry and neurology are the same
thing.

Do you want to know what is going on
in Germany? Many physicians in
Germany are both neurologist and
psychiatrist.

Blurred lines between medical
specialities. There`s only a half page
about "CFS" in German students`s
neurology textbook describing "CFS"
as a psychosomatic disorder.

That`s why I think that including
leaders from NINDS will not help
provide unbiased research and
effective treatments.

On the contrary!

I can only repeat John Gabor`s words:

"What's worse than NO research
for ME:

More flawed research based on
flawed criteria which is sure to mix
in people who don't have ME."

-----

30 oktober 2015

http://bit.ly/1MjGGlX

ME ACTION

MISLEADING PACE
CLAIMS SHOULD BE
RETRACTED

TO: THE LANCET, PSYCHOLOGICAL
MEDICINE, AND THE AUTHORS OF
THE PACE TRIAL

Given the weak and flawed methodologies of
the PACE trial, which claims that CBT and GET
led to the recovery of ME/CFS patients, we,
the undersigned patients, doctors, scientists,
parents, children, family, friends, caretakers
and #MEAllies:  

*) Call upon The Lancet to retract the claim
made in its February 2011 editorial [1] that
30% of patients, or indeed any patients at
all, were said to have recovered in the
accompanying Lancet paper on the PACE
trial [2]; and retract from that paper all
analyses and statements in relation to the
absurd “normal ranges” for fatigue and
physical function:

http://bit.ly/1MjIoUw

*) Call upon Psychological Medicine to
retract the claims in this paper [3] that
22% of patients in the CBT and GET groups
recovered, based on recovery criteria that
were weakened so far from their original
form in the study protocol that they no
longer represent recovery by any rational
standard:

http://bit.ly/1MjILOZ 

*) Call upon the study authors to publish
the recovery outcomes according to the
analyses specified in the trial’s protocol [4]
and to give independent researchers full
access to the raw data (anonymised by
removing trial identifiers and all other data
superfluous to the calculation, such as age,
sex or location). #MEAction undertakes to
meet any reasonable cost of analysis or
data preparation:

http://bit.ly/1MjJ500

*) Call upon all parties to reject the view
that being as disabled as patients with
congestive heart failure is a good recovery
of physical function in CFS.

Why is this important?

The UK’s £5 million PACE trial has been hugely
influential in bolstering the view that CFS
(chronic fatigue syndrome) patients can
recover if they gradually increase their activity,
despite widespread reports of harm [5].

This view informs how patients around the
world are treated in the media, in medical
practice and by society. It is crucial that
misleading claims of recovery do not stand.  

"All the issues with the trial are extremely
worrying, making interpretation of the clinical
significance of the findings more or less
impossible.” – (Emeritus Professor Jonathan
Edwards of University College London)
 
Claims have been made in The Lancet and
Psychological Medicine that a substantial
proportion of CFS patients in the PACE trial
recovered after a course of cognitive
behavioural therapy (CBT) or graded exercise
therapy (GET).

However, the claims are based on criteria that
were revised after the study was already
underway.

These new criteria included “normal ranges” for
fatigue and physical function that are so broad
that patients could at the end of the trial have
physical function similar to someone with
congestive heart failure — and yet be classed
as “recovered”.
 
Being as disabled as patients with congestive
heart failure [6] simply isn’t good enough to
count as recovery of physical function for
patients with chronic fatigue syndrome.

READ MORE:

http://bit.ly/1MjJTlw

[1]
http://bit.ly/1Rexu6L

[2]
http://bit.ly/1PUEyHm

[3]
http://1.usa.gov/1iioqBz
 
[4]
http://bit.ly/1PRcpBK

[5]
http://bit.ly/1Mtu8yM

[6]
http://1.usa.gov/1iioXDC

Editor's note: We use here the term "Chronic
Fatigue Syndrome" (CFS) in line with the PACE
trial authors' terminology and use of the Oxford
Criteria.

-----

13 januari 2015

http://bit.ly/1BlzJ2j

mecfsforums

Re: UPDATE: My Email to CFSAC’s DFO
Asking if HHS Edited the CFSAC Working
Group P2P Document.

By Jeannette Burmeister

Below is Ms. James' reply to my email:

Quote:

The draft comments, which will be finalized
during tomorrow's meeting, will be posted to
the CFSAC website after the Secretary has
signed off on them.

And here is my response:

Dear Ms. James,

Thank you for your reply.

I am afraid, however, that it was not
responsive to my question.

So, let me ask again:

Was the document that the CFSAC P2P
Working Group had prepared as draft
comments to be discussed at the CFSAC
meeting and, once finalized, to be submitted
as official CFSAC P2P comments edited by
HHS before being sent to the entire
committee?

If so, would you please make both versions of
the document available.

CFSAC patient representative, Donna Pearson,
sent an email to patients who had asked
similar questions, in which she gave her view
of the events surrounding the P2P Working
Group document and the edits made to that
document by HHS.

Therefore, I am also requesting that all
emails between the Working Group and HHS
staff concerning the Working Group document
and the HHS edits thereto be made available,
so that the public can fully understand what
occurred.

I am looking forward to your responsive
reply.

Sincerely,

Jeannette Burmeister

-----

12 januari 2015

http://bit.ly/1AJUymK

mecfsforums

By Jeannette Burmeister

My Email to CFSAC’s DFO Asking if HHS Edited
the CFSAC Working Group P2P Document.

Just wanted to share this email that I sent
to Barbara James (CFSAC’s DFO) at
Barbara.James@hhs.gov regarding a
potentially serious concern with respect to
CFSAC’s official P2P submission.

Hopefully, we’ll get an answer before the
meeting on Tuesday.

       Dear Ms. James,

       I heard that the CFSAC P2P Working
       Group had prepared a document for
       official submission regarding P2P to be
       discussed at the upcoming CFSAC
       meeting and that this report was heavily
       edited by HHS before being sent to the
       full committee.

       Is that true?

       If it is, then I believe the public should
       see both the original Working Group
       document prior to HHS’s editing and the
       document that went to the full
       committee.

       I look forward to your reply.

       Sincerely,
       Jeannette Burmeister

Many others have aked the same question.

Some examples:

Partricia Carter

Thank you, Jeannette, for posting this.

I have not discussed this with Jeannette, but
I have sent my own email to Barbara James
asking the same question.

I encourage anyone who wants to know, as I
do, to email Barbara James herself.  Maybe if
enough of us ask, HHS might answer.

Barbara.James@hhs.gov

````````
Ess:

Thank you very much for bringing this to our
attention, Jeannette.

I will also be following up with an e-mail to
Barbara James.

Etc, etc.       

Please write and ask the same
question; the more, the
better:
   
Barbara.James@hhs.gov
 

-----

2 januari 2015

NATIONAL INSTITUTES OF HEALTH

Pathways to Prevention Workshop:
Advancing the Research on Myalgic
Encephalomyelitis/Chronic Fatigue
Syndrome

December 9–10, 2014

DRAFT EXECUTIVE SUMMARY

Carmen R. Green, M.D.; Penny Cowan;
Ronit Elk, Ph.D.; Kathleen M. O’Neil,
M.D.; Angela L. Rasmussen, Ph.D.

http://bit.ly/1A6Q8IK

-----

29 december 2014

Public comment on the
P2P Draft Statement

http://on.fb.me/1rshlm9

-----

20 december 2014

Comment on the December
2014 AHRQ Evidence Report
on "ME/CFS"

http://on.fb.me/13NFKrR

-----

19 december 2014

Why There Is an Urgent Need
to Widely Distribute the Myalgic
Encephalomyelitis International
Consensus Primer to Doctors

http://on.fb.me/1sI1DnF

-----

16 december 2014

Cytokine expression
provides clues to the
pathophysiology of Gulf
War illness and myalgic
encephalomyelitis

http://bit.ly/1sB5keS

-----

11 december 2014

 SHOUTOUTABOUTME
 Myalgic Encephalomyelitis/
 Chronic Fatigue Syndrome

  http://bit.ly/1BdfUZ2

-----

10 december 2014

  
 U.S. Campaign for Myalgic Encephalomyelitis (M.E.)

[]

 
 

     U.S. Campaign for Myalgic Encephalomyelitis (M.E.)

Laura Vitale

-----

12 november 2014

http://bit.ly/1pRLVFh
                    
[] 
By Jeannette K. Burmeister

P2P FOIA Documents, Part 5
ME/CFS P2P Violates 
NIH Rules, Woot Woot!

-----

8 november 2014

Thoughts About M.E.

By Jeannette K. Burmeister

Federal Court awards
$139,147 in Attorneys’
Fees Against HHS and
NIH in IOM FOIA Case 

-----

3 november 2014

[] 

By Jeannette K. Burmeister

P2P FOIA Documents,
Part 4–NIH: Neither
Patients Nor Science
Meant to Be Part of P2P

http://bit.ly/1tRzloY
-----

1 november 2014

Use of single-nucleotide
polymorphisms (SNPs) to
distinguish gene expression
subtypes of chronic fatigue
syndrome/myalgic
encephalomyelitis (CFS/ME)

http://bmj.co/13s7MZq

-----

31 oktober 2014

Original Research
Neuroradiology

Right Arcuate Fasciculus 
Abnormality in Chronic 
Fatigue Syndrome.

http://bit.ly/1yLUTDA

-----

19 oktober 2014

Medscpae Medical News

Chronic Fatigue:
NIH Literature
Review Faulted

Miriam E. Tucker

http://bit.ly/1wTForR

-----

17 okt 2014 

Onward Through the Fog

AHRQ Evidence

Review - Comments
From the Advocates

http://bit.ly/ZGNcT3

-----

25 juni 2014 

CFSAC Written/Public Comment

Eileen Holderman - June 17, 2014

http://bit.ly/1wy9bH9

-----

18 juni 2014

Thoughts About M.E.

My June 2014 CFSAC Testimony
Posted on June 16, 2014
by Jeannette Burmeister

http://bit.ly/1pglsxE

-----

 8 juni 2014

A Different CFSAC

It’s that time again:
meaning it is time for another CFS Advisory Committee meeting.

http://bit.ly/1uC2B1k

-----

18 juni 2014

Thoughts About M.E.

My June 2014 CFSAC Testimony
Posted on June 16, 2014
by Jeannette Burmeister

http://bit.ly/1pglsxE
-----

2 juni 2014

http://bit.ly/1gZZC01
                                            
Jennie Spotila

Tell Dr. Collins to Stop P2P

As I explain in this previous post
( http://bit.ly/1u9mtZB), Mary Dimmock and I
have sent a letter to Dr. Francis Collins
requesting that he cancel the P2P Workshop and
reexamine the best way to collaborate with the
ME/CFS research and clinical community.

The P2P Workshop will use a panel of
non-ME/CFS experts, selected by NIH, to make
recommendations on case definition, research
direction and possibly treatments.

You can read more about P2P and what I’ve
discovered through FOIA requests in the posts
gathered here: http://bit.ly/1p1C776

       If you are worried about what P2P could
       produce.....

       if you think this is bad science.....

       if you want to voice your opposition to
       using non-ME/CFS experts to advise NIH on
       the direction of ME/CFS research . . .

Here is your chance:

Fax or email Dr. Francis Collins today and request
that he cancel the P2P Workshop.

Use the template I have provided below, or write
your own. Fax Dr. Collins at 301-402-2700 or
email him at collinsf@mail.nih.gov

It’s simple, but it’s a start.

Please take a few minutes to do this today.

If you have questions or comments, post them
here or email me at jspotila AT yahoo DOT com
 

Dear Dr. Collins:

I am writing to request that you cancel the P2P
Workshop on ME/CFS.

I believe that the P2P Workshop will not advance
us towards the much needed ME/CFS research
case definition or strategy, for the following
reasons:

1) ME/CFS experts have already pointed a way
forward on research and case definition.

2) The Workshop is examining the wrong
disease: the problem of medically unexplained
fatigue and not ME/CFS.

3) NIH has not engaged or involved stakeholders
in a substantive way.

4) The Workshop decision makers are
non-ME/CFS experts.

5) HHS has made numerous contradictory
statements about the purpose of the Workshop,
so it’s goal is unclear.

I understand that you were recently provided
with extensive documentation of these five
points.

Dr. Collins, I am not objecting to the P2P
Workshop simply to criticize federal efforts to
address the challenges of ME/CFS.

Careful consideration of these issues raises
legitimate concerns about whether the P2P
Workshop will produce the good science and
sound recommendations we need to advance
ME/CFS research.

I hope you will give my concerns a fair hearing,
and that you will cancel the P2P Workshop.

Sincerely,

[Your name]

 

-----

2 juni 2014

Collins: Please Cancel P2P

http://bit.ly/1u9mtZB

-----

30 mei 2014

[]

 http://lnc.hr/E12Bj

-----

28 mei 2014

OIG Fails to Investigate IOM
Conflict of Interest & Tells
ME/CFS Patients to Buzz Off

http://bit.ly/1knvDin

-----

21 mei 2014

Journal of Translational Medicine 

Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO2peak indicates functional impairment.

http://bit.ly/1m5RSsp

-----

21 mei 2014

First Direct Evidence of Neuroinflammation -
‘Encephalitis’ - in ME/CFS

http://bit.ly/1jqjNV6

-----

17 mei 2014

Neuropsychological impairment in
female patients with chronic fatigue
syndrome: a preliminary study.

http://1.usa.gov/1gQj9uw

-----

16 mei 2014

Baffling Chronic Fatigue Syndrome
Set for Diagnostic Overhaul

http://bit.ly/1nYPpAD

-----

15 mei 2014

 []

ME-patiënten luchten hun hart bij Kamerleden

http://bit.ly/1nSttHr

-----

15 mei 2014

Kamer zet ME-patiënt in de wachtkamer

http://bit.ly/1g8y5ZU

-----

13 mei 2014

CDC AND NIH Officials Discussed 
"Desirable Outcome" of Seeing A 
Distinct Illness "Evaporate”. 

http://bit.ly/OygptU

-----

9 mei 2014

Stigma of chronic
fatigue illness adds
to suffering - survey

http://bit.ly/1uJ2ORk

-----

6 mei 2014

Two demonstrations on May 12th

See more of the The Massachusetts CFIDS/ME &

FM Association: http://www.masscfids.org/

-----

3 mei 2014

Eileen Holderman's Email to IOM:  
Continued Opposition

http://bit.ly/1mpt41S

-----

2 mei 2014

Health and Quality of Life Outcomes

http://bit.ly/1iR9Ajq

-----

2 mei 2014

Thoughts about M.E.  

P2P Review Protocol: Still No Transparency

bit.ly/1n4xISe

-----

1 mei 2014

Do it for ME

When we do it for ME, let we also vote for:

*Stop the IOM! Adopt the CCC!*

Sign at:  http://bit.ly/1qLfgey

-----

28 april 2014

The way the NHS treats M.E in this country
is based solely on the results of one
research trial called the PACE trial.

http://on.fb.me/1fK515i

-----

28 april 2014

The Hidden Truth 

http://www.methehiddentruth.com/

-----

26 april 2014

Man crippled by ME for 30 years
killed himself using drugs
recipe from suicide handbook -
and left notes warning fire
crew what they would find in
the house.

http://dailym.ai/1k3AbqQ

-----

25 april 2014

Inability of myalgic
encephalomyelitis /chronic
fatigue syndrome patients to
reproduce VO2peak indicates
functional impairment.

http://1.usa.gov/1ihgG0b

-----

23 april 2014

INVEST in ME 

Terminology

By Professor Malcolm Hooper

http://bit.ly/1etK7fW

-----

23 april 2014

The Glutathione System: A New Drug
Target in Neuroimmune Disorders.

http://1.usa.gov/1rlKmtv

-----

22 april 2014

The Microbe Discovery Project

"I think that the microbiome is going to be
where the action is [in ME/CFS]...  I am
really eager to pursue that work."

http://bit.ly/1ttWyw8

-----

22 april 2014

Tell Congress IOM Definition for
ME/CFS Set Up To Fail

Use our new easy One Click app to tell Congress
and the Department of Health and Human
Services, the IOM redefinition for ME/CFS is set
up to fail just like the Gulf War Illness definition.

Tell them to adopt the Canadian Consensus
definition and the name Myalgic
Encephalomyelitis now.

Click here to send your letter:

http://www.meadvocacy.org/iom_set_up_to_fail2

Fred Smith, M.E. Advocacy.org
http://www.meadvocacy.org/
M.E. Advocacy - a project of May12.org · PO
Box 112, Ellsworth, IA 50075, United States

-----

21 april 2014

Professor Sir Simon Wessely – 
Right or Wrong?

http://bit.ly/PnZB93

-----

19 april 2014

METHOD OF DIAGNOSING AND
TREATING EPSTEIN BARR
VIRUS-BASED MYALGIC
ENCEPHALOMYELITIS CHRONIC
FATIGUE SYNDROME PATIENTS

http://bit.ly/1jgUuzy

-----

16 april 2014

Cardiac dysfunction and orthostatic
intolerance in patients with myalgic
encephalomyelitis and a small left
ventricle.

http://1.usa.gov/RsZefk

-----

16 april 2014

Thunderclap to Oppose
the IOM, Support the
CCC: Let Our Voices be
Heard Loud and Clear

http://bit.ly/1kzNPo3

-----

14 april 2014

Loudly Snub the IOM

The prestigious Institute of Medicine Committee
on Diagnostic Criteria for ME/CFS humbly
requests the honor of your presence at their
third meeting, taking place in Washington D.C.
on the 5th of May, 2014, beginning at 1:00 p.m.
EST.

http://bit.ly/1hDx6AE

-----

13 april 2014

mecfsforums 
Patricia/Wildaisy

Hillary Johnson tweeted something today that
really struck a chord with me.

Quote:Hillary Johnson @oslersweb - 3h
“PWME who worry differences of opinion
online will lead Feds to conclude patients are
nuts should be wondering instead why Feds
are looking.”

http://bit.ly/1jBcRlD

-----

13 april 2014

The IOM has scheduled another open 
meeting on May 5, 2014 concerning the 
redefinition effort for ME/CFS.

They are asking for input on two questions.

We have already loudly and clearly stated that
the contract should be stopped, and the
existing Canadian Consensus Criteria case
definition should be adopted, yet the contract
continues.

Therefore, we are asking all ME and CFS
patients, and other interested parties to
boycott and protest the meeting.

You can protest by joining the Thunderclap.

Sign up now, and on May 5 at 9am (the day
of the meeting), there will be an automatic
mass protest on social media:

http://bit.ly/1qLfgey

Stay tuned for other protest actions you can
take.

Fred Smith, M.E. Advocacy.org
http://www.meadvocacy.org/

-----

12 april 2014

Join Jeannette Burmeister in sharing this message together
at the same time - automatically.

Please join this advocacy movement to stop the IOM from
redefining a disease that our experts have already defined.

And participate in this Thunderclap campaign before
the day of the next IOM meeting on May 5, 2014.

Invite Family , friends
Let our voices be heard:

http://bit.ly/1qLfgey

-----

11 april 2014

BREAKING NEWS Sebelius Resigning as Health Secretary

http://nyti.ms/1lTZVdT

-----

11 april 2014

Don’t Silence Yourself

http://bit.ly/1gcBrJ4

-----

10 april 2014

Key points from Professor 
Anthony Komaroff’s Highlights 
of the IACFSME 2014 Conference

 http://bit.ly/1gVWVvq

-----

8 april 2014

[] 

Brain Scans To Detect
Chronic Fatigue Syndrome

http://bit.ly/1g56g2r

-----

8 april 2014

Now You See It, Now You Don’t: 
HHS Covers Up Flawed IOM 
Contracting Procedure

http://bit.ly/1hyljh8

-----

7 april 2014

May12th Int'l Awareness Day

“Tell the world! Today is May 12th
International Awareness Day for
ME/CFS & FM.
/may12th /mecfs /fibro /spoonies /fm

https://www.thunderclap.it/projects/10106-may12th-int-l-awareness-day?locale

-----

1 april 2014

Dr. Anthony L. Komaroff highlights  the
biological research presenations of the 11th
International IACFS/ME Conference:

"Translating Science Into Clinical Practice" 
San Francisco, CA March 20-23, 2014

YouTube video: http://bit.ly/1gVWVvq

-----

30 maart 2014

First translation from hearing available!!

We want to share this letter written by Per and Ketty
Hansen to members of Parliament that was presented in
conjunction with the hearing held on March 19th.

On that day no mention of Karina was allowed but this
letter is shared on the public site listed below.

Stig Gerdes (a doctor who spoke at the hearing)
wanted to read this letter but no mentioning of
individual cases was allowed.

We have more translations coming so please like our
page and watch for more to come!

http://bit.ly/1jnRF30

-----

26 maart 2014

With Significant Advances But Little
Money, Chronic Fatigue Syndrome
Research Tries Crowdfunding

David Tuller

http://bzfd.it/1jFmzXt

-----

26 maart 2014

Sympathetic nervous system
dysfunction in fibromyalgia,
chronic fatigue syndrome,
irritable bowel syndrome, and
interstitial cystitis: a review of
case-control studies.

http://1.usa.gov/1gC5paU

-----

25 maart 2014

Predictors of Post-Infectious Chronic 
Fatigue Syndrome in Adolescents.

http://1.usa.gov/1eJbyQA

-----

22 maart 2014

Systematic review: faecal microbiota
transplantation therapy for digestive
and nondigestive disorders in adults
and children.

http://1.usa.gov/1dtXk27

-----

18 maart 2014

And immunological abnormalities are 
two biomarkers of chronic fatigue

http://bit.ly/1lMjz8C

-----

18 maart 2014

CDC and NIH Officials Discussed
"Desirable Outcome" of Seeing a
Distinct Illness "Evaporate”.

http://bit.ly/OygptU

-----

18 maart 2014

ME/CFS Patient Demonstration
on March 21st and March 22nd

http://bit.ly/1djENW5

-----

17 maart 2014

ME and CFS Mortality Study

https://redcap.is.depaul.edu/surveys/?s=DHxuYxScEn

-----

14 maart 2014

Danish ME/CFS patients' health-related
quality of life (EQ-5D) and life satisfaction
from 2013 to 2014.

The study shows ME/CFS patients have the lowest
quality of life compared to 21 diseases.

http://bit.ly/1fEyDET

-----

14 maart 2014

Chronic Fatigue Controversy

by David Tuller, DR.PH

http://bit.ly/1ggPkkZ

-----

13 maart 2014

IOM Admitted Lack of
Expertise in GWI Report

http://bit.ly/1i7L7V8

-----

11 maart 2014

CFSAC Meeting December
2013: Webinar from Hell

http://bit.ly/1fmlKdC

-----

10 maart 2014

http://stanford.io/1ffCGqN

2014 STANFORD MYALGIC
ENCEPHALOMYELITIS/
CHRONIC FATIGUE 
SYNDROME SYMPOSIUM

Advances in Clinical Care
and Translational Research

March 19, 2014 – 8:30 am to 6:00 pm

-----

8 maart 2014

Stonebird response to:
“ME/CFS is an organic disorder”
by Professor Malcolm Hooper

http://bit.ly/1lh2weH

-----

4 maart 2014

WHITE HOUSE CHRONICLE

The Strange Case of the
NIH and an Elusive Disease

By Llewellyn King

http://bit.ly/1gOkJNU

-----

2 maart 2014

ME/CFS is an organic disorder

Professor Malcolm Hooper    

 27th February 2014

Given the decades-long determination of the psychiatric lobby to
re-classify and claim ME/CFS as a mental (behavioural) disorder,
possibly as a Bodily Distress Disorder, it is encouraging to note
that on 12th February 2014 the WHO publicly confirmed that:

“Fibromyalgia, ME/CFS are not included as Mental &
Behavioural Disorders in ICD-10, there is no proposal to do
so for ICD-11”

and that this has been accepted by the UK Parliamentary
Under-Secretary of State for Health (Jane Ellison MP) who, on
25th February 2014 stated on the record:

     “The World Health Organisation is currently
      developing the 11th version of the International
      Classification of Diseases, which it aims to publish in
      2017. No discussions have taken place between the
      Department and the WHO on the reclassification of
      ME/CFS, but the WHO has publicly stated that there is
      no proposal to reclassify ME/CFS in ICD-11”.

With all the current furore about the US Institute of Medicine’s
handing out to mostly non-experts in ME/CFS the task of
compiling a brand new case definition and the equal concern about
the American Psychiatric Association’s current revision of the
DSM (Diagnostic and Statistical Manual of Mental Disorders), it
may be helpful to be aware not only of the WHO’s position but
also to recall that twenty two years ago the UK High Court of
Justice ruled on the status of ME/CFS/PVFS.

There have been many court cases in the UK involving claims for
ME/CFS; many claimants have been successful but have been
compelled to sign very tight gagging orders, meaning that they must
never discuss the legal action or reveal the outcome. 

To do so would be in contempt of Court, a situation in which no
sane person would ever contemplate placing themselves. 

Over the years, Dr (now Professor Sir) Simon Wessely has been
involved in numerous such cases, sometimes appointed to act for
the plaintiff and sometimes acting for the defendant.

His view about the nature of ME/CFS is well-known: according to
his published work he firmly believes ME does not exist and that
CFS is a behavioural disorder.

Not all cases, however, were kept out of the media. 

In November/December 1992 the case of Ronald Page v Simon
Smith was a landmark case and was widely reported in the press.

Mr Page had previously suffered from ME and alleged that the
road traffic accident in which he was involved (for which he was
not liable) had caused a severe and permanent relapse of the
condition.

The case was heard before Mr Justice Otton (High Court of
Justice; Queen’s Bench Division; No: 92-NJ-135), who remarked
that:

“This is one of the most interesting cases I have ever
had the privilege of trying”.

The Approved Judgment (Transcript Writers: Beverly F. Nunnery
& Co) was clear:

the Judge stated that the condition did not always receive the
sympathy and understanding it deserves, this being manifested as
scepticism by some doctors due to the reluctance of the medical
profession to recognise the disorder and to accept it as a medical
condition.

The Judge noted the failure of the public in general to appreciate
that it is a genuine (physical) illness and he noted the tendency,
even the temptation, to associate the symptoms with sloth,
indolence, malingering and hysteria. He said:

“Even in this case one doctor saw fit to make a diagnosis of
paranoid schizophrenia which I am satisfied was totally
erroneous and Mr Page is entitled to my saying so”.

The Judge posed eight questions, the first being:

“Is there a condition, disease or illness called ME?”,

the second being:

“What are the principal or typical symptoms or
characteristics of this condition”

and the third being:

“What causes it?”. 

The remaining questions pertained to the individual circumstances
of the case, specifically, did the RTA materially contribute to the
plaintiff’s post-accident condition?

Appearing for the plaintiff was Dr William Weir, then a consultant
physician at The Royal Free Hospital, London, who, it was
subsequently noted, was well-regarded by the Courts; his
evidence was that there is compelling evidence pointing towards
the presence of a virus in ME/CFS/PVFS and that the immune
system is found to be in a state of chronic activation, suggesting
that some agent is provoking that activity.

Also appearing for the plaintiff was Dr Simon Wessely, then senior
lecturer in psychological medicine at King’s College Hospital
Medical School and the Institute of Psychiatry and honorary
consultant psychiatrist at the King’s College and Maudsley
Hospitals; it was recorded in the Judgment that he had not
examined the plaintiff (which was in keeping with his
non-examination of the patient in other legal cases).

The Judge noted in particular Dr Wessely’s assertion that:

“the only facts that can be substantiated (about
ME/CFS/PVFS) are, first, that CFS is not due to
neuromuscular disease…. Second, CFS is associated with a
high rate of psychiatric disorder over and above that due to
the psychological consequences of physical disability”. 

Mr Justice Otton further noted that Dr Wessely

“excludes neurological or virological causes”

and that Dr Wessely stated:

“the discouraging material from the ME Association may
have contributed to (the plaintiff’s) relapse”,

also noting that Dr Wessely said in his report that the most difficult
part of the plaintiff’s case was in showing that the accident had
contributed to his relapse.

The third medical expert appearing for the plaintiff was Dr (later
Professor) Leslie Findley, then a consultant neurologist at the
Regional Centre for Neurology and Neurosurgery at Oldchurch
Hospital Romford; his evidence was that:

“There is no doubt that [CFS]… exists and is a genuine and
common condition”. 

The Judgment noted Dr Findley’s opinion that:

“Physical, psychological and infective stresses of all types can
result in deterioration”

and that:

“traumatic stress is now well recognised as a cause of
relapse”.

The experts called on behalf of the defendant included Dr
Adrianne Reveley, then consultant psychiatrist at the Maudsley
Hospital and whom Dr Wessely confirmed in evidence that he
knew quite well, who stated (erroneously) in her evidence that:

“nowhere in any of the descriptions of CFS is trauma referred
to as a precipitant”

and that the balance of probability was that trauma has nothing to
do with ME and that:

“the ME literature was a vehicle for (the plaintiff’s)
condition”.

The next witness for the defendant was Dr David Kendall,
honorary consultant neurologist at St George’s and St Helier
Hospitals. In evidence he said:

“I must say that first of all I am a total disbeliever in this
syndrome… there are the devotees of this diagnosis who
support it with a fervour which is little short of religious… My
view is that this condition does not exist as a clinical entity
other than in the minds of the sufferers and it follows from my
own argument that if this is correct trauma can neither
initiate nor aggravate the condition…  

My own view about this matter is that there is no clinical,
pathological or epidemiological reason to suppose that this is
in any way due to viral disease… (and) to me the symptoms so
closely resemble those of non-organic illness that my view
from the early days of this disorder has been that it is
emotionally rather than physically determined”. 

In his Judgment, Mr Justice Otton noted that in Dr Kendall’s
opinion, the plaintiff’s condition was:

“entirely psychiatric in origin… He did not believe in ME”.

The third witness for the defendant was Dr McKeran, consultant
neurologist at the Maudsley, St George’s and St Helier Hospitals.
He was asked to comment on Dr Wessely’s report and said that
the specificity of symptoms and their significance to the aetiology
and pathogenesis remain unclear:

“The evidence is not sufficient to draw a firm conclusion of
organic origin, but he would not rule out organic factors”.

In coming to his conclusion as to which parts of the medical
evidence he preferred, the Judge noted that he was faced with an
impressive body of medical opinion on behalf of the plaintiff and
the defendant and that it was “irreconcilable”.

In his Judgment, Mr Justice Otton said in answer to his first
question (“Is there a condition, disease or illness called
ME?”):

“I do not share Dr Kendall’s scepticism on this disease. He
has not persuaded me that the condition does not exist as a
clinical entity other than in the minds of sufferers…. I accept
Dr Findley’s opinion as a neurologist:

‘There is no doubt that [CFS] (synonymous with Myalgic
Encephalomyelitis) exists and is a genuine and common
condition’ ”.

“Question 2: what are the principal or typical symptoms or
characteristics?….

I accept Dr Weir’s finding from his work in this field that ‘a
characteristic feature is an extreme variability of their
severity together with a tendency to relapse if the patient
over-exerts himself even on days when he feels marginally
better’ ”.

“Question 3: what causes it? 

On the evidence before me and the present state of medical
knowledge as opposed to theory and speculation, I am unable
to answer this question with total certainty… I was impressed
by Dr Weir’s research conclusions… I am prepared to find on
the balance of probabilities that the chronic activation of the
immune system is due to an agent provoking this activity
probably by an as yet unidentified virus.

I also accept his conclusion that the condition can be
triggered by a viral infection or emotional stress or the
trauma of an accident. I accept without reservation that he
had had experience of other patients who have been
diagnosed as suffering from CFS as a result of the trauma of
an accident”.  In this regard also I accept Dr Findley’s
evidence which is based on similar clinical experience”.

“I accept the majority view of the experts that physical,
psychological and infective stresses of all types can result in
deterioration in the condition and impair recovery…. Once it
is established that CFS exists and that a relapse or
recrudescence can be triggered by the trauma of an
accident… it becomes a foreseeable consequence”.

The plaintiff duly won his case and was awarded £162,153.00 in
compensation.

However, the defendant appealed and the award (some of which
had been given to the plaintiff) had to be handed back because the
appeal was successful (30th March 1994: Court of Appeal Civil
Division before Lord Justice Ralph Gibson, Lord Justice
Farquharson and Lord Justice Hoffmann: OBENF 93/0098/C;
Transcript Writers: John Larkin Verbatim Reporters; [1994]
4AllER 522 CA). 

The issue was not whether or not ME/CFS exists as a medical (ie.
physical, not mental) disorder nor about its classic
symptomatology: the challenge was that the road traffic accident
could not have caused the plaintiff’s ME to relapse and therefore
the defendant was not liable to pay compensation. 

The case then went to the House of Lords, where the Judgment
was handed down on 11th May 1995, the case having been heard
before Lord Keith of Kinkel (who found against Mr Page); Lord
Ackner who found for Mr Page); Lord Jauncy of Tullichettle (who
found against Mr Page); Lord Justice Browne-Wilkinson (who
found for Mr Page) and Lord Lloyd of Berwick (who found for
Mr Page), so it was 3:2 in favour of Mr Page (1995:2AllER 736;
reported in Personal & Medical Injuries Law Letter, December
1995:68-70). 

In that Judgment, there was repeated reference to ME/CFS as a
physical disorder (although on 12th May 1995 Frances Gibb,
The Times’ legal correspondent, referred to it as a mental
disorder).  Their Lordships, however, sent it back to the Court of
Appeal on a legal technicality.

Finally on 12th March 1996 came the Judgment of The Master of
The Rolls, Sir Thomas (later Lord) Bingham (whose own
daughter-in-law was severely affected by ME), together with Lord
Justice Morrit and Lord Justice Auld (Court of Appeal Civil
Division on Appeal from the High Court of Justice: QBENF
93/0098/C), which upheld the original Judgment of Mr Justice
Otton in favour of Mr Page after a nine year legal battle. 

The case was  reported in the All England Law Reports on 10th
July 1996: ([1996] 3AllER:272-280; Transcript Writers: John
Larkin Verbatim Reporters).  

In the Judgment, The Master of The Rolls said about Mr Justice
Otton’s original findings:

“I discern no error in the judge’s approach…. I have no doubt
but that the judge was fully entitled to reach the conclusions
he did on the evidence before him…. In my judgment, his
findings on this matter were both careful and correct…. I am
of the opinion that the judge’s conclusion on this issue is
unassailable.  Despite the contrary opinion reached by Ralph
Gibson LJ when the issue was last before the Court of Appeal,
I have for my part no hesitation in upholding the decision of
the judge.  I would dismiss the defendant’s appeal”. 

Lord Justice Morrit and Lord Justice Auld both agreed.

     It is thus enshrined in UK law that ME/CFS is a physical,
     not psychiatric, disorder, although the mechanism by which
     a relapse may occur following trauma is via “nervous
     shock”.

Curiously, it proved to be extremely difficult to obtain all the
transcripts. It was variously said that they had been inadvertently
lost by the Transcript writers; that they had not been approved by
the Court; and that they no longer existed, none of which was true.

Now why should that be?  

Case law is there to be quoted and relied upon.

-----

27 febr 2014

IOM PUBLIC MEETING, JANUARY 27, 2014:
PART 2: THE CDC MULTI-SITE STUDY AND
P2P

http://bit.ly/1hm4fif

-----

26 februari 2014

Press Release

National CFIDS Foundation's
Research Finds Chromosome
Damage in Patients Diagnosed
with Chronic Fatigue Syndrome
and Myalgic Encephalomyelitis

http://bit.ly/1lluQiK

-----

25 februari 2014

COMMENTS REGARDING THE
ME/CFS DEFINITION STUDY

for the public record.

To: Institute of Medicine Panel Members, Diagnostic
      Criteria for ME/CFS

From: Billie Moore
           New Jersey Chronic Fatigue Syndrome
           Association Advocacy Chair

Date: January 22, 2014

It is important to mention once again that the IOM has
embarked on a study to determine the definition for
Myalgic Encephalomyelitis, often called Chronic Fatigue
Syndrome or ME/CFS, when the recommendation of the
HHS’s Chronic Fatigue Syndrome Advisory Committee
specifically called for the adoption of the Canadian
Consensus Criteria definition:

(Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: 
Clinical Working Case Definition: Diagnostic and Treatment
Protocols)

rather than a new study.

Fifty experts in the field of ME/CFS also urged the adoption
of this CCC definition and the abandonment of this
expensive, time consuming and unnecessary study being
undertaken by the IOM. 

(Fifty experts, it must be noted, is a large proportion of
experts in a field with very few knowledgeable practitioners
and researchers, unlike most disease fields in medicine
where the patient population is over one million in the U.S.
alone.) 

And 170 patient advocates urged the same.

The advice and urging were ignored by the HHS, and here
you are.

``
Since the study is moving forward, I will address my
comments to what is a key issue – whether ME is a
subset of CFS or whether ME is a separate disease. 

First, a brief history. 

The disease was first called ME in the 1980’s and was
subsequently changed to CFS, with a very broad definition
including depressive and other psychiatric symptoms
included.

The Fukuda definition of 1994 did not improve on prior
definitions, and significantly did not require that
post-exertional neuroimmune exhaustion (PENE) be
present for a diagnosis of CFS. (See the International
Consensus Criteria definition.) 

It also required a six-month waiting period before a
diagnosis of CFS could be given, a time-requirement no
other disease requires. 

The Canadian Consensus Criteria, which has been
recommended to be adopted by CFSAC, was developed in
2003 by ME/CFS experts. 

The term ME/CFS was also developed in the mid-2000’s
because patients and expert physicians alike recognized
that “chronic fatigue syndrome” was a vague, diminishing
name with strong overtones of “it’s all in your head.” 

The joint name, ME/CFS, is now used by many patients and
patient groups and much of the Dept. of Health and Human
Services. 

It is still not correct, however. 

What has emerged from these decades of misnaming and
sloppy defining (prior to the CCC) is confusion and incorrect
diagnoses which included those with psychiatric problems. 
Four possibilities exist regarding the two terms, ME and
CFS:

# 1. either these two terms define the same illness; or

# 2. ME is a subset of CFS; or

# 3.  ME and CFS are two entirely different diseases, or

# 4. the term “chronic fatigue syndrome” is a false
        construct and invalid.

To address the possibilities listed above I start with #4 and
state that “chronic fatigue syndrome” does not exist.

It is too vague and imprecise a name for a disease with
many discrete and measurable symptoms. 

(You should have in your packet of reading materials a
table called, “Myalgic Encephalomyelitis (ME/CFS) Table of
Biological Abnormalities, Clinical/Lab Tests and Drugs with
Potential for Repurposing” which gives an outstanding
overview of abnormalities of the disease we are trying to
properly define.)

However, because CFS has been in the literature for 25 or
more years as a result of the naming in the 1980’s and
1990’s and definitions mentioned above, there is a logical
hesitancy to chuck it into the medical wastebasket. 

But “CFS” must be chucked, and it is my hope that those
on this panel will do away with “CFS” and its poor
definitions and properly define the disease which is well
defined in the CCC and ICC definitions.

#1 and 3 follow from #4. 

CFS is a falsely created and defined set of imprecise
symptoms; therefore, it is not the same as ME.  It is also
not a disease that is different from ME.  It is not a disease
at all.

Number #2 will take some of your time in discussions, I 
am sure. 

However, if you can consider that #4 is true, it, too, becomes a
non-possibility: ME cannot be a subset of a non-disease. 

Nevertheless, let me address this point. 

For 25 or so years this disease has been called chronic
fatigue syndrome.

Very likely the majority of patients who have been
diagnosed with CFS as far back as the 1990’s meet the
ICC definition of ME.  (At least three studies have shown
that this is the case.*1)   

Why were those patients diagnosed with CFS and not
ME? 

Simply because that while their symptoms met the
criteria for ME, ME was not being used as a label in the
U.S. until the mid-2000’s.

Their symptoms had not yet been listed and explained
properly until the CCC came along; everything was
called CFS. 

The CCC definition refers to ME as “sometimes called”
chronic fatigue syndrome and adopts the combination
name, ME/CFS.

However, what has evolved somehow is the thinking in
some quarters that ME is a subset of CFS.

No.

Some patients have been diagnosed with CFS who do not
have ME because of the overly broad CFS definitions still in
use (Fukuda, Reeves). 

But what they really have is unknown because they do
not meet the criteria for ME, and “CFS” doesn’t define
anything accurately.

“Chronic fatigue syndrome” is not real. 

It is a false construct. 

It is a name that prevents a proper diagnosis of the real
disease.

ME is a neurologic and immune disease with distinct and
measurable abnormalities.
ME is not a subset of this oddity “chronic fatigue
syndrome.”

Please dispense with it and adopt the CCC or ICC
definitions, the latter being the more up-to-date and
comprehensive of the two. 

At long last, give this devastating, life-robbing disease
a proper name and definition that can be used with
confidence by experts and non-experts alike to
diagnose and treat it. 

*1, Jason, L.A., Brown, A., Evans, M.,  Sunnquist, M. , &
Newton, J.L. (2013). Contrasting chronic fatigue syndrome
versus MyalgicEncephalomyelitis/chronic fatigue syndrome.
Fatigue: Biomedicine, Health & Behavior, 1, 168-183.

2, Jason, L.A., Sunnquist, M., Brown, A., Evans, M., and
Newton, J.L. (in press). Are Myalgic Encephalomyelitis and
chronic fatigue syndrome different illnesses? A preliminary
analysis. Journal of Health Psychology.

3. Brown, A. A., Jason, L. A., Evans, M. A., & Flores, S.
(2013). Contrasting case definitions: The ME International
Consensus Criteria vs. the Fukuda et al. CFS criteria. North
American Journal of Psychology, 15(1), 103-120.
 

-----

23 februari 2014

Role of adaptive and innate
immune cells in chronic
fatigue syndrome/myalgic
encephalomyelitis.

http://1.usa.gov/1e6JOoS

-----

22 februari 2014

Mitochondrial dysfunctions in Myalgic
Encephalomyelitis / chronic fatigue
syndrome explained by activated
immuno-inflammatory, oxidative and
nitrosative stress pathways.

http://1.usa.gov/1joJD97

-----

21 februari 2014

Epstein-Barr Virus Infection
Masquerading as Acute Leukemia: A
Report of Two Cases and Review of
Literature.

http://1.usa.gov/MHRvY9

-----

21 februari 2014

Documenting M.E.

Documenting my journey
down the rabbit hole of
Myalgic Encephalomyelitis

Is ME fatal? A different perspective.

http://bit.ly/1nPE3wB

-----

14 februari 2014

The Federal Register Notice for the March 11
webinar is now available at the following link:
 
http://1.usa.gov/1eWUZSn
 
 
The CFSAC Support Team

http://www.hhs.gov/advcomcfs/index.html

-----

13 februari 2014

Exercise and M.E. event: 
research findings

http://bit.ly/1bYNKqs

-----

11 februari 2014

Are Myalgic Encephalomyelitis and
chronic fatigue syndrome different
illnesses? A preliminary analysis.

Jason LA, Sunnquist M, Brown A, Evans
M, Newton JL.

http://1.usa.gov/1h8jEW0

-----

11 februari 2014

Examining case definition
criteria for chronic fatigue
syndrome and myalgic
encephalomyelitis.

Jason LA1, Sunnquist M1, Brown A1,
Evans M1, Vernon SD2, Furst J3, Simonis
V3.

http://1.usa.gov/1jt1iPG

-----

8 februari 2014

CDC CFS PATIENT-CENTERED
OUTREACH AND COMMUNICATION
ACTIVITY (PCOCA) CONFERENCE CALL
- Feb. 25

MARK YOUR CALENDARS:
 
CDC CFS Patient-centered outreach
and communication activity (PCOCA)
Conference Call 
 
Tuesday, February 25, 2014
 
3:00 pm * 4:00 pm EST
  
Call number: 1-800-369-3365
Participant Code: 1471493
   
Meeting Agenda
 
3:00pm    Welcome and Telephone Overview
 
3:05pm    Updates from CDC - Elizabeth Unger,
                 PhD, MD - Branch Chief, Chronic Viral
                 Diseases Branch - Centers for
                 Disease Control and Prevention
 
3:15pm    "CFS and Cognitive Function"
                 Gudrun Lange, Ph.D.
                 Consultant Clinical Neuropsychologist
                 Pain and Fatigue Study Center  
                 Beth Israel Medical Center, NY, NY
                 Professor, Department of Physical
                 Medicine and Rehabilitation Rutgers
                 University
 
3:45pm    Questions from  
                 CFSPCOCACall Mailbox
                 for Guest Speaker and
                 CDC 
 
 
Disclaimer:

Although the content of calls is directed to
patients, caregivers, health care professionals, and
other interested parties, CDC has no control over
who participates on the conference call. 

Therefore please exercise discretion on sensitive
content and material, as confidentiality during
these calls cannot be guaranteed.
 
 
Please note that questions for the Guest Speakers
and CDC can be submitted only via email at
CFSPCOCACall@cdc.gov<CFSPCOCACall@cdc.gov>.

This mailbox cannot respond to inquires received
and is in use only for the scheduled CFS PCOCA
calls.

If you would like to be added to the call list, please
send an email to
CFSPCOCACall@cdc.gov<CFSPCOCACall@cdc.gov>.
   
Contact for CFS PCOCA Conference Call:  

CFSPCOCACall@cdc.gov<CFSPCOCACall@cdc.gov

The CFSAC Support Team cannot answer questions 
about this upcoming call.
 
The CFSAC Support Team
http ://www.hhs.gov/advcomcfs/index.html

-----

7 februari 2014

Irritable Bowel Syndrome May Be
Associated with Maternal Inheritance
and Mitochondrial DNA Control Region
Sequence Variants.

van Tilburg MA, Zaki EA, Venkatesan T,
Boles RG.

Abstract

BACKGROUND AND AIM:

Mitochondrial dysfunction has been implicated in
various functional disorders that are co-morbid to
irritable bowel syndrome (IBS) such as migraine,
depression and chronic fatigue syndrome.

The aim of the current case-control pilot study was
to determine if functional symptoms in IBS show a
maternal inheritance bias, and if the degree of this
maternal inheritance is related to mitochondrial DNA
(mtDNA) polymorphisms.

METHODS:

Pedigrees were obtained from 308 adult IBS
patients, 102 healthy controls, and 36 controls with
inflammatory bowel disease (IBD), all from
Caucasian heritage, to determine probable maternal
inheritance.

Two mtDNA polymorphisms (16519T and 3010A),
which have previously been implicated in other
functional disorders, were assayed in mtDNA
haplogroup H IBS subjects and compared to genetic
data from 344 published haplogroup H controls.

RESULTS:

Probable maternal inheritance was found in 17.5 %
IBS, 2 % healthy controls and 0 % IBD controls (p <
.0001).

No difference was found between IBS and control
for 3010A, and a trend was found for 16519T (p =
0.05). IBS with maternal inheritance were
significantly more likely to have the 16519T than
controls (OR 5.8; 95 % CI 1.5-23.1) or IBS without
maternal inheritance (OR 5.2; 95 % CI 1.2-22.6).

CONCLUSIONS:

This small pilot study shows that a significant
minority (1/6) of IBS patients have pedigrees
suggestive of maternal inheritance.

The mtDNA polymorphism 16519T, which has been
previously implicated in other functional disorders, is
also associated with IBS patients who display
maternal inheritance.

These findings suggest that mtDNA-related
mitochondrial dysfunction may constitute a
sub-group within IBS.

Future replication studies in larger samples are
needed.

PMID: 24500451 [PubMed - as supplied by
publisher]

-----

7 februari 2014

P2P: “Patients to Purgatory” or
the Jury Model Stood on its Head

http://bit.ly/1aByLUK

-----

5 februari 2014

Tymes Trust Alert -ME is Disability
under Equality Act

Message from Jane
5 February 2014

Follow Jane on Twitter @JaneCColby
or read her tweets at www.tymestrust.org

ME RECOGNISED AS DISABILITY
UNDER EQUALITY ACT

Also:

John Whittingdale OBE MP becomes Tymes Trust Patron
More on Child Protection Issues

The Rt Hon the Earl Howe, Parliamentary Under Secretary of
State for Quality (Lords) at the Department of Health, is one
of Tymes Trust's Patrons. He has confirmed in a letter that:

"The Equality Act 2010 sets out the need to treat people
equally who have a protected characteristic such as a
disability. ME/chronic fatigue syndrome (CFS) falls within
the definition of disability and so organisations must assure
themselves that such considerations have been taken into
account in the commissioning of services."

This is an important statement that you can quote if you are
faced with doctors who say that ME does not exist (yes, this
is still happening!) or schools/colleges/universities that are
not making suitable arrangements for the education of young
people with ME.

Earl Howe has taken care to use the term 'ME' as well as 'CFS'
so you should be able to call to account anyone who is not
fulfilling their obligations under equality law.

JOHN WHITTINGDALE OBE MP BECOMES 
TYMES TRUST PATRON

John Whittingdale has represented Maldon in Parliament
since 1992 and is the Trust's constituency MP. He is Chair of
the Parliamentary Select Committee on Culture, Media and
Sport and you will probably know his face well from his
many television interviews and appearances.

At a recent meeting with him, he kindly agreed to become a
Patron of Tymes Trust and is currently pursuing a matter of
importance for us.

MORE ON CHILD PROTECTION ISSUES

Once again, I return to this whole issue of inappropriate child
protection investigations of families whose children have
ME. We are still engaged in addressing this problem.

Paediatrician Dr Nigel Speight is a member of the Trust's
Professionals Referral Service. I have worked with Nigel
since the early 1990s, including on the Chief Medical
Officer's Working Group and compiling the subsequent
report.

This report, which made important statements about child
protection, was never issued to doctors but it was published
by the Department of Health: read our booklet 'Revisiting the
2002 Department of Health Report on CFS/ME here:

http://www.tymestrust.org/pdfs/revisitcmoreport.pdf

Dr Speight has recorded several interviews and in one of
these he describes some of the cases he has dealt with or
helped the Trust with. We are now up to our 115th such case
and I do urge you to call our Advice Line if you should
suspect that anything like this is likely to affect
you.

It is important to seek advice early; we do advise families to
see their child's medical and school records to find out what
may be written there. It is your right to see these.

Dr Speight's interviews are at: http://bit.ly/Mt1YWS

Dr Speight is also taking part in a web-based question and
answer session on Friday, February 14 from 5-5.30pm
(Central European Time – one hour ahead of GMT) arranged
by the Dutch organisation ME/CFS Vereniging (in English).

You can arrange access at: 

www.me-cvsvereniging.nl/chatvenster

If you know of anyone, friends, family, other acquaintances,
professionals, who may find my Alerts useful, do suggest
that they subscribe (this is free of charge) by typing their
email address into the box at the top of our home page
www.tymestrust.org

All good wishes
 
Jane
 
Jane Colby FRSA
Executive Director
The Young ME Sufferers Trust
PO Box 4347, Stock, Essex, CM4 9TE
www.tymestrust.org
Tel: 0845 003 9002
 
Holder of The Queen's Award for Voluntary Service:
The MBE for Volunteer Groups
    
````

READ ALL PREVIOUS ALERTS AND SUBSCRIBE 
TO MY LIST AT

To unsubscribe, send an email via the website Contact Us
form.

ou are welcome to redistribute or reprint this email without
seeking our permission provided: 1) you do not abbreviate,
add to, or change the text in any way; 2) the authorship
information is retained; and 3) www.tymestrust.org is
credited as the source.
 
Jane Colby is Executive Director of The Young ME Sufferers
Trust. She was a Headteacher for nine years, a member of the
government Chief Medical Officer's Working Group on
CFS/ME and co-authored ME/CFS In UK Schools, the
largest epidemiological study of ME to date. She is a life
member of the National Association of Head Teachers and a
Fellow of the Royal Society of Arts.
 
Copyright (c) 2014 The Young ME Sufferers Trust

www.tymestrust.org

-----

1 februari 2014

In spite of the swindle of the GWI -IOM committee:

*which turned a perfectly fine name, Gulf War Illness,
into a completely offensive, non-descript, meaningless
and, thus, harmful name, chronic multi-symptom illness
(CMI), for which it recommended graded-exercise
therapy, cognitive-behavioral therapy and
antidepressants and which mentioned the same
“treatments” for “ME/CFS.* (Help ME Circle, 4 October
2013; source: http://bit.ly/1fNASa1 ) - real research is
going on.

````

http://bit.ly/1eGfwW5

PLOS ONE

Exercise challenge in Gulf War Illness
reveals two subgroups with altered
brain structure and function.

Rayhan RU, Stevens BW, Raksit MP, Ripple JA,
Timbol CR, Adewuyi O, VanMeter JW, Baraniuk
JN.

Published: June 14, 2013

DOI: 10.1371/journal.pone.0063903

Abstract

Nearly 30% of the approximately 700,000 military
personnel who served in Operation Desert Storm
(1990-1991) have developed Gulf War Illness, a condition
that presents with symptoms such as cognitive
impairment, autonomic dysfunction, debilitating fatigue
and chronic widespread pain that implicate the central
nervous system.

A hallmark complaint of subjects with Gulf War Illness is
post-exertional malaise; defined as an exacerbation of
symptoms following physical and/or mental effort.

To study the causal relationship between exercise, the
brain, and changes in symptoms, 28 Gulf War veterans
and 10 controls completed an fMRI scan before and after
two exercise stress tests to investigate serial changes in
pain, autonomic function, and working memory.

Exercise induced two clinical Gulf War Illness subgroups.

One subgroup presented with orthostatic tachycardia
(n=10)
    
This phenotype correlated with brainstem atrophy,
baseline working memory compensation in the cerebellar
vermis, and subsequent loss of compensation after
exercise.

The other subgroup developed exercise induced
hyperalgesia (n=18) that was associated with cortical
atrophy and baseline working memory compensation in
the basal ganglia.

Alterations in cognition, brain structure, and symptoms
were absent in controls.

Our novel findings may provide an understanding of the
relationship between the brain and post-exertional
malaise in Gulf War Illness.

Introduction

Gulf War Illness (GWI) has affected 25% to 30% of the
approximately 700,000 military personnel who served in
the 1990–1991 Persian Gulf War [1].

Veterans present with multifaceted symptom profiles that
include cognitive impairment, widespread pain,
interoceptive complaints and autonomic dysfunction
[2]–[4].
There are no validated clinical markers for GWI to account
for inter-individual variations in symptom severity or
differences from controls.

Ambiguity is increased by the use of multiple
epidemiologically derived criteria and non-standardized
symptom assessments [1], [3]–[5].

Research suggests a prominent neurological component,
but no unifying disease mechanisms have emerged
[6]–[11].

GWI shares subjective symptoms with other idiopathic
illnesses that include chronic fatigue syndrome (CFS) and
fibromyalgia [5], [12].

Similar to CFS and fibromyalgia, GWI subjects complain of
exertional malaise with severe exacerbations of baseline
symptoms following a physiological stressor [12]–[15].

Exercise is a useful model to study symptom alterations in
CFS, fibromyalgia and GWI [15]–[17].

However, the causal relationships between exercise, the
brain, and deteriorating disease status are unknown.

We hypothesized that acute physiological stressors would
exacerbate symptoms and identify the predominant
mechanisms associated with central nervous system
dysfunction.

The effects of 2 bicycle exercise stress tests performed
on consecutive days on widespread pain (hyperalgesia),
autonomic regulation, and working memory function were
studied in 10 controls and 28 Gulf War veterans who met
the 1998 CDC case definition criteria for GWI over a four
day period [4].

Subjects completed functional magnetic resonance
imaging (fMRI) scans before and 1 hour after the two
stress tests.

Cognition was assessed in the fMRI scanner using the
N-back working memory paradigm.

Serial pain and cardiovascular assessments were obtained
throughout the protocol.

We defined two exercise induced phenotypes of GWI
based upon orthostatic tachycardia and systemic
hyperalgesia.

Subgroup identification was associated with static
anatomical differences in white and gray matter, baseline
patterns of blood oxygen level dependent (BOLD) flow
during cognitive testing, and significant dynamic
exercise-induced changes in BOLD patterns in working
memory, attention and pain processing networks.

Results

Phenotype Identification

-----

28 januari 2014

From: OS OPHS CFSAC (HHS/OPHS)
<CFSAC@HHS.GOV>     

Save the date: CFSAC Webinar -
March 11, 2014 from 12:00-5:00
PM ET

A Chronic Fatigue Syndrome Advisory
Committee (CFSAC) Webinar is scheduled for
March 11, 2014 from 12:00-5:00 PM Eastern
Time.

The webinar's main purpose is to have more
discussion around the potential
recommendations coming from the two
workgroups.

We will provide an opportunity for those who
had been scheduled for the December 10
public testimony (cancelled because of
weather) to give their testimony.

We will also have reports from the
agencies who weren't able to give their
report during the December webinar.
 
Further details to follow.

The CFSAC Support Team
http://www.hhs.gov/advcomcfs/index.html

-----

25 januari 2014

Decreased oxygen extraction during
cardiopulmonary exercise test in
patients with chronic fatigue syndrome.

Vermeulen RC, Vermeulen van Eck IW

http://1.usa.gov/1eRXLFX

-----

24 januari 2014

Deficient EBV-Specific B- and
T-Cell Response in Patients with
Chronic Fatigue Syndrome

http://1.usa.gov/1mQBFIm

-----

24 januari 2014

Anne Keith:

Sunday, 19 January 2014

This is CRITICAL...

How critical?

This is so critical I am traveling for 12+ HOURS
just to present for 3 MINUTES at the IOM
meeting!

IF YOU HAVE NOT SIGNED, PLEASE DO SO RIGHT
NOW.

If you have signed, then please share as widely as
possible.

The deadline for this will be Jan. 27th, the day of
the IOM public meeting. Please, I need your support
in the effort to stop this extremely harmful
contract.

If you know me, you know how this disease has
destroyed my life.

 []

It does that to millions worldwide yet vested
interests are trying to prevent research that might
lead to real treatment.

This cynical effort will cause untold suffering.

HHS is pushing this contract through despite
vehement opposition because, after 30 years, major
researchers are about to announce major findings.

Those findings might lead to real treatments, which
HHS has said it fears would be "expensive."

EXPENSIVE?

We're talking about a disease that costs the US
economy double the annual NASA budget.

We're talking about DECADES of intense
suffering by 17 MILLION people worldwide!

How could this contract prevent research?

By including so many non-patients in the
researchers' groups that all abnormalities are
hidden.

A "definition" decides who should be included in
studies of disease.

If "cough" was the sole criteria for the definition of
lung cancer, "patients" groups would be dominated
by those with common colds so tumors in patients
would be considered extremely rare.

Sounds farfetched?

It is already happening today in research on ME/CFS
with those who intentionally choose to use
extremely broad definitions.

And that promising research I mentioned above?

Yup, much of it uses the CCC to define the group of
patients studied.

It is time to demand that the US government,
specifically the Department of Health and Human
Services (HHS), follow science instead of block it.

It is time that the many calls to adopt the CCC
definition be heeded.

And it is definitely time to stop wasting money on a
contract that will result in additional pain and
suffering by US citizens, as well as those
throughout the world.

Please join me in demanding this by signing the
petition below:

http://bit.ly/1ghbG8v

-----

23 januari 2014

Want to Help in the IOM Fight? 
Sign This Petition!

http://bit.ly/19PGKxd

-----

14 januari 2014

Llewellyn King is Executive Producer and Host, "White
House Chronicle" on PBS; Columnist, Hearst-New York
Times Syndicate; Commentator, SiriusXM Satellite
RadioMobile: (202) 441-2702 - Web Site:
whchronicle.com 

````
He wrote a lot of articles about ME/cfs in the "White
House Chronicle" and recorded many interviews with ME
researchers on YouTube. See between others:

http://bit.ly/JYCLTs

http://bit.ly/1aBU8U2

http://bit.ly/1eBQeth

-----

12 januari 2014

Invest in ME

9th International ME
Conference 2014

30th May London, UK

The 9th Invest in ME
International ME Conference 2014

Synergising Research into ME

www.investinme.org

-----

10 januari 2014

Federal Lawsuit Filed Against HHS
and NIH Relating to IOM “Study”

http://bit.ly/1hBzLe3

-----

8 januari 2014

IOM in Full Stealth Mode:
No Information on Potentially
Only Meeting Open to Public

http://bit.ly/1gDm4Ix

-----

8 januari 2014

After OIG Dodges Charge of IOM’s Conflict 
of Interest, Meaningful Reply Demanded 

http://bit.ly/1bPLIEA

-----

3 januari 2013

HHS and the IOM Saga:

The Definition of Insanity and a Bad Case of Stockholm Syndrome

http://bit.ly/1hk86y2

-----

24 december 2013

Petitie ivm definitie CVS/ME 
SUPERrrbelangrijk!

http://bit.ly/1gT9WWk

-----

17 december 2013

[]

New Advocates’ Letter to Secretary Sebelius
Re IOM Contract Open for Signatures

http://bit.ly/1fk4Nmk

-----

11 december 2013

Email to Dr. Lee: Request to
Cancel Today’s CFSAC Meeting

http://bit.ly/1kzIRob

-----

10 december 2013

CFSAC Meeting Needs to be Rescheduled
for a Two Full Day In-Person Meeting

http://bit.ly/18ADLWG

-----

11 november 2013

Call for Investigation by the Inspector 
General of the IOM’s Conflict of Interest 
With Respect to ME/CFS

http://bit.ly/1gDvSEt

-----

11 november 2013

Overwhelming, Growing Support of ME                                
Experts by Advocates in Opposition to
IOM Contract: Advocates’ Open Letter
Re-Sent With Additional Signatures

http://bit.ly/17fY4oD

-----

9 november 2013

UPDATED ACTION!

Tell Congress & the President to Cancel
the IOM Contract & Adopt the CCC!

http://bit.ly/1bhAc6s

-----

2 november 2013

Subject: ACT: Challenge the CDC Campaign
From: Co-Cure Moderator <ray@co-cure.org>
Date: Sun, 31 Oct 2010 15:10:27 -0400

Note:  Our anonymous poster just sent in these 
two clarifying points:

"I forgot to say it can be re-posted.

"I also forgot to say is "This is not planned as a 
repetitive email campaign.  

A single email is sufficient."

````

[Moderator's note: This is being posted for a subscriber
who wishes to remain anonymous.]

An email/phone/fax campaign has been initiated to
contact the CDC about the permanent Chief of the
Chronic Viral Diseases Branch.

A decision will be made at the CDC about this position in
the near future, so please communicate your opinion as
soon as possible.

This is the suggested message:

Dr. Elizabeth Unger is not qualified to be Chief 
of the Chronic Viral Diseases Branch at the CDC.

At the recent Chronic Fatigue Syndrome Advisory
Committee (CFSAC) meeting she continued to
defend research done on a group of patients
defined by the "empiric" (Reeves, 2005) definition
of CFS, a definition that the DHHS CFS Advisory
Committee recommended be abandoned in 2009.

In addition, she has been unresponsive to
communications from ME/CFS researchers and
clinicians outside the CDC.

As Acting Chief she has not demonstrated the skills
necessary to advance the CDC's mission as it
relates to ME/CFS.

The CDC research program for CFS needs new ideas
and new leadership.

Dr. Unger has shown that she is not up to the task.
She should not be appointed permanent Chief.

Please send the message to Stephan Monroe, who will
be making the hiring decision, Thomas Frieden, Director
of the CDC, Howard Koh, Assistant Secretary for
Health (with responsibility for ME/CFS at DHHS) and
Kathleen Sebelius, Secretary of the Department of
Health and Human Services.
        

These are their email addresses:

mailto:

stephan.monroe@cdc.hhs.gov

txf2@cdc.gov,

howard.koh@hhs.gov,

mailto:

kathleen.sebelius@hhs.gov

````

To help keep track of how many emails are sent, please
also send a copy to: challengeCDCcampaign@gmail.com

Also, if you have questions or comments about the
campaign, please contact:

challengeCDCcampaign@gmail.com

and put Comment in the subject line.

Feel free to add any comments or alter wording if you
want to, but please keep in mind that brevity is
probably appreciated by these busy public officials.

If you prefer to phone, fax or write a letter, here is
some additional contact information:

Stephan S. Monroe, PhD
Director, Division of Viral and Rickettsial Diseases
Room NCEZID
CLFT
Atlanta, GA  30329-4018
tel: 404-639-2391
fax: 404-639-3163
email: stephan.monroe@cdc.hhs.gov

Thomas Frieden, MD, MPH
Director, Centers for Disease Control and Prevention
CLFT Building
Room OCOO
Atlanta, Ga 30329-4018
tel: 404-639-7000
fax. 404-639-7111
email: txf2@cdc.gov

Howard Koh, MD, MPH
Assistant Secretary for Health, Department of Health
and Human Services
Room 7-716G
200 Independence Ave., SW  HHH B
Washington, DC
tel: 202-690-7794
email: howard.koh@hhs.gov

Kathleen Sebelius
Secretary, Department of Health and Human Services
Room 120F
Washington D.C.
200 Independence Ave. SW
tel:  1-877-696-6775
email: kathleen.sebelius@hhs.gov

Thank you very much for helping to challenge the CDC
to improve their response to ME/CFS.
        

This is a group effort to make our voices heard.

-----

2 november 2013

Cerebral vascular control is associated
with skeletal muscle pH in chronic fatigue
syndrome patients both at rest and during
dynamic stimulation.

http://1.usa.gov/18NOPv6
 

-----

31-10-2013

Professor Sir Simon Wessely
      – Right or Wrong? -
        

Margaret Williams       
                 

28th October 2013

When a professional person – especially a doctor – has
repeatedly been shown to be wrong in their
professional judgment and, as a direct consequence,
people have been harmed, that doctor should surely be
held personally responsible and accountable: in such
circumstances legitimate criticism should not be
dismissed as an ad hominem (personal) attack.

Following the award of the inaugural John Maddox Prize
to psychiatrist Professor Sir Simon Wessely for his
alleged “courage” in “standing up for science” and for
promoting “sound science” about ME/CFS in the face of
“hostility” in doing so, a letter published on 13th
January 2013 by the Countess of Mar, Professor
Malcolm Hooper and Dr William Weir in The Independent
on Sunday was explicit that criticism of Wessely’s
hypothesis about ME/CFS is scientifically legitimate:

“Scientific understanding always depends upon sound
evidence…. For scientific understanding to prevail, the
extensive biomedical evidence-base of ME/CFS must
now be recognised by all researchers in the field. 

The idea that ME/CFS is due to a dysfunctional psyche
is a hypothesis without an evidence-base.
The Maddox Prize was therefore awarded to the
defender of an hypothesis with no evidence-base
rather than to someone who was upholding true
scientific inquiry.  

Personal attacks against Professor Sir Simon Wessely
do not advance the cause, but it is scientifically
legitimate to direct criticism at the hypothesis both he
and Professor White (chief Principal Investigator of the
MRC’s PACE trial on ME/CFS) continue to espouse”.

       It has been shown time and again that
       Professor Sir Simon’s published assertions
       about disorders such as ME/CFS,
       fibromyalgia, Gulf War Syndrome, the
       Camelford drinking water poisoning, and
       interstitial cystitis are simply wrong.

Merely stating so is likely to result in yet more claims by
him of “harassment” and “attack” upon him but, in the
words of Professor Martin Bland, one of the UK’s
leading medical statisticians, it is important that false
information should not remain on the record to be
quoted uncritically by others:

       “Potentially incorrect conclusions, based on
       faulty analysis, should not be allowed to
       remain in the literature to be cited uncritically
       by others” (Fatigue and psychological distress.
       BMJ: 19th February 2000:320:515-516).

Wessely’s “incorrect conclusions”, however, remain in
the literature to be cited uncritically by others and
therefore may result in iatrogenic harm.

ME/CFS

For over 25 years Wessely’s dismissal and rejection of
the biomedical evidence on ME has continued
unabated, even though there is substantial evidence of
on-going inflammation throughout the body; systems
prominently affected are the central and autonomic
nervous systems, the immune system and the
cardiovascular, endocrine, gastro-intestinal and
musculoskeletal systems.

Unscientifically, he conflates ME, CFS,
PVFS and chronic “fatigue” into what he
refers to as “CFS”.

This has become a waste-basket label, with 40% of
those afforded it subsequently being shown to have
other diagnoses (J R Coll Physicians Edinb,
2010:40(4):304-307).

Despite the extensive biomedical evidence that shows
him to be wrong, Wessely is certain that he is right:

he believes that ME/CFS is a behavioural disorder that
should be managed with “cognitive restructuring”
specifically designed to convince sufferers that they
are not physically sick.

Indeed In October 2003, in a frenzied attack on people
with ME and on those scientists and clinicians who
regard it as an organic disorder, Wessely raged that
those who disagree with him and believe ME to be an
organic disorder (to whom he referred as “the
radicals”) are “crazy” and that they are “engaged in
fantasies, lies and gross distortions”.

He wrote that the “radicals” are left “fighting
yesterday’s battles” (seemingly because he believes he
has established that ME does not exist except as a
false illness belief), that they need a “reality check”
and that “their behaviour is outrageous” (private
communication; available to Medical Defence Union
lawyers on legitimate request).

[] 

Ten years later, his views have not progressed in
line with the advancement of medical science:

       At a medical meeting in March 2013 held in
       Bristol, Wessely informed attendees that ME
       has been caused almost entirely by what he
       called the “shockingly” negative way in
       which some ME charities, in particular the ME
       Association, portray it as a viral illness,
       saying that this has harmed patients as it
       encourages them to focus too much on
       symptoms and to be fearful of activity,
       resulting in a vicious cycle of deconditioning.

Making no distinction between chronic “fatigue” and
ME/CFS, doctors were assured by Wessely that all
patients with CFS would benefit from the same
management regime, namely behavioural therapy and
exercise (Research in Chronic Fatigue Syndrome – ups
and downs; Bristol Medico-Chirurgical Society; 13th
March 2013: approved as a Continuing Medical
Education module).

The continued propagation of such erroneous beliefs is
a matter of significant concern because of their
potential harm to very sick people, so it may be
appropriate to re-consider the evidence that proves
Professor Sir Simon to be wrong about four other
issues as well: fibromyalgia, Gulf War Syndrome, the
Camelford poisoning tragedy, and interstitial cystitis.

Fibromyalgia

As with ME/CFS, Simon Wessely believes that
fibromyalgia (FM) is a functional somatic disorder
(Lancet 1999:354:936-939), despite the fact that FM
is formally classified in the World Heath Organisation’s
ICD-10 at M79 as a soft tissue disorder.

FM was officially recognised as a syndrome on 1st
January 1993 by the WHO as a result of the
Copenhagen Declaration (Consensus Document on
Fibromyalgia: The Copenhagen Declaration 1992). It is
a systemic disorder and affects not only the muscles –
including the heart – but also the gut and immune
system, and these are all recognised features of FM.  

Israeli researchers have pointed out that FM is believed
to be the result of a central nervous system
malfunction and emphasised that:

“many of the differential diagnoses can be excluded by
means of an extensive clinical examination and patient
history” (Autoimmun Rev 2012 Jun:11(8)585-588).

But Wessely advises against extensive clinical
examination, claiming that it supports patients’ false
beliefs that they are physically ill.

Whilst Wessely has not changed his position that
fibromyalgia is but one part of a unified functional
somatic syndrome, medical science has shown that in
fibromyalgia, there is objective evidence of:

*)    abnormal nerve fibres in the skin, showing enlarged
Schwann cells which relay information from tissues to
brain and produce cytokines, resulting in pain (Clin
Rheumatol 2008:27:407-411)

*)    central nervous system malfunction which increases
pain transmission and perception (Autoimmun Rev, June
2012)

*)    autoimmune thyroid disease being highly associated
with fibromyalgia (J Rheumatol, June 2012)

*)    overlap with inflammatory back pain (Clin Exp
Rheumatol, August 2012)

*)    interstitial cystitis and irritable bowel syndrome as
co-morbidities (Front Neurosci, August 2012)

*)    altered cerebral blood flow dynamics with an
enhanced haemodynamic response (Psychosom Med,
Sept 2012)

*)    self-management programmes being ineffective
(BMC Musculoskelet Disord, September 2012)

*)    inflammatory dysregulation
(Neuroimmunomodulation, Sept 2012)
*)    neuromuscular fatigue and lowered exercise
capacity (Arthritis Care Res, September 2012)

*)    mitochondrial dysfunction  (Antioxid Redox Signal,
Sept 2012)

*)    small-fibre polyneuropathy with evidence of nerve
loss (American Neurological Association 137th Annual
Meeting in partnership with the Association of British
Neurologists; Abstract W1409;  7-9th October 2012)

*)    abnormally high muscle membrane conduction
velocity (Clin Exp Rheumatol 2012: November 22)

*)    FM commonly occurring in patients with autoimmune
disorders such as lupus, Sjogren’s Syndrome and
rheumatoid arthritis (BMC Clinical Pathology, 17th
December 2012:12:25)

*)    aberrant expression of immune mediators
(cytokines), with impairment of cell-mediated immunity,
providing evidence that FM is an immunological disorder
which occurs independently of any subjective features
(BMC Clinical Pathology, 17th December 2012:12:25)

*)    hearing difficulties, hair loss and easy bruising (Clin
Exp Rheumatol 2012:30:S88-S93)

*)    impaired small-fibre function, pointing towards a
neuropathic nature of pain in FM
( http://bit.ly/1aIxmax)

*)    biochemical differences (changes in tryptophan
catabolism pathway) that are quite distinctive from
those found in osteoarthritis or rheumatoid arthritis
(Analyst Issue 16, 2013)

*)    a mismanaged blood flow and low levels of
inflammation, with a unique peripheral neurovascular
pathology consisting of excessive peptidergic sensory
innervation of cutaneous arteriole-venule shunts (AVS)
in the skin of FM patients confirmed by multimolecular
immunocytochemistry, with blood flow dysregulation as
a result of excessive innervation to AVS contributing to
widespread deep pain and fatigue (Pain Medicine: June
2013:14:6:895-915)

*)    heart rate variability (HRV) aberrances, indices of
increased sympathetic activity and a blunted
autonomic response to stressors (Semin Arthritis
Rheum 2013:6th July)

In addition to these demonstrable abnormalities, there is
no objective link to psychiatric disease in fibromyalgia
(BMC Clinical Pathology 2012:12:25) and furthermore,
there is evidence that the use of antidepressants in
long-term treatment of fibromyalgia resulted in a worse
impact of the disease on patients’ daily lives, with
worsened quality of life and deterioration in long-term
management (Clin Pract Epidemiol Ment Health
2013:9:120-124).

Evidentially, Wessely’s aberrant belief that fibromyalgia
is but one component of a single functional somatic
syndrome has been vitiated and he has been proved
wrong.

Gulf War Syndrome

Simon Wessely was knighted in the 2013 New Year
Honours List for his work on “military health”; he is
civilian psychiatric advisor to the UK Ministry of
Defence where, despite his having no case definition of
Gulf War Syndrome (GWS), he has consistently denied
its existence, ascribing it to “stress of combat” and to
a “belief” of exposure to a chemical attack (Lancet:
16th January 1999:353:169-178).

Despite having been funded to the tune of $1 million by
the US Pentagon, Wessely and his co-psychiatrist
Professor Anthony David (both described as “specialists
in unexplained syndromes”) definitively concluded that
exposure to chemical weapons was not the cause of
Gulf War veterans’ health problems (US cash for study
of Gulf victims. Jeremy Laurence. Independent: 4” June
1997).
Sixteen years later, Wessely’s view apparently still
pertains throughout the UK Ministry of Defence.

       In contrast, US scientists have shown that
       Gulf War veterans’ chronic ill-health is indeed
       linked to toxic causes and it is clear that Gulf
       War Illness/Syndrome cannot be associated
       with stress or any psychiatric disorder: it is
       associated with poisoning by the
       cholinesterase inhibitors sarin and
       organophosphates (these being known
       neurotoxins which give rise to multi-system
       illness) combined with the effect of
       pyridostigmine bromide which acts
       synergistically with them (US
       Congressionally Mandated Report of the
       Research Advisory Committee on Gulf War
       Illness – Findings and Recommendations;
       13th June 2012).  

Further, a large study led by Robert Haley, Professor of
Internal Medicine and Chief, Division of Epidemiology,
University of Texas Southwestern Medical Centre,
confirmed cholinergic dysfunction in affected Gulf War
veterans (Archives of Neurology, 26 November 2012:
1-10).

The authors concluded:

       “Autonomic symptoms are associated with
       objective, predominantly cholinergic
       autonomic deficits in the population of Gulf
       War veterans”, with affected veterans
       displaying orthostatic intolerance,
       secretomotor dysfunction, upper
       gastrointestinal dysmotility, sleep
       dysfunction, urinary dysfunction and
       autonomic diarrhoea.

As Haley pointed out:

“It takes this out of the realm of psychological
illness into the realm of a brain illness” (Gulf War
Illness linked to Cholinergic Abnormalities.  Pauline
Anderson: Medscape 26 November 2012).

The statistics show that almost one third of UK troops
who were deployed or were prepared for deployment to
the Gulf (which equates to between 13,250 and 15,900
previously fit and healthy personnnel) remain
chronically sick.

Death statistics from GWS are impossible to obtain
because once the sick Gulf War veterans have left the
armed forces, they are passed to the care of the NHS
and no extant medical records for service personnel are
made available to the NHS – they have been either
destroyed or retained by the MoD.  (It is notable that
in 1997, Wessely forecast that Gulf War veterans’
“contemporary records…may be difficult to obtain”:
BMJ 1997:314:239-240).

Thus convincing evidence exists that proves
Wessely is wrong in asserting that Gulf War
Syndrome does not exist and that veterans’
ill-health is merely the result of their own
misperceptions.

The Camelford water poisoning tragedy

Wessely not only denies the existence of ME and of Gulf
War Syndrome:

he has denied that residents of Camelford were
poisoned by aluminium sulphate.

In July 1988, 20 tonnes of aluminium sulphate were
accidentally pumped into the drinking water supplies of
the small town of Camelford in Cornwall.

It was reported that in the Camelford catastrophe,
seven people died; 25,000 suffered serious health
effects, and 40,000 animals were affected. (Dr Douglas
Cross. The Ecologist:1990:20:6:228-233).

Five years later, an article by Bernard Dixon entitled
“Still waters” was published in the BMJ (5th August
1995: 311:395); it informed readers that:

“mass hysteria was largely responsible for the
furore”.

Dixon’s article was based on a 1995 “re-assessment” of
the Camelford incident by psychiatrists Anthony David
and Simon Wessely which was published in the Journal
of Psychosomatic Research  (1995:39:1-9).  

Dixon noted that David and Wessely had found that
anxiety was the cause of the symptoms and that there
was no evidence of long-term adverse effects on
health as a consequence of the drinking water
contamination.

However, David and Wessely’s confident assertion that
mass hysteria and/or anxiety were responsible for the
supposed suffering of those in the Camelford area at
the time of the incident has been shown to be wrong.

Paul Altman et al showed that Camelford residents who
were exposed to aluminium sulphate-contaminated
drinking water suffered considerable damage to
cerebral function which was not related to anxiety, and
that there was objective evidence of organic brain
damage compatible with the known effects of exposure
to aluminium (BMJ 1999:319:807-811).

Altman et al reported that previous psychological
studies on victims of the Camelford incident which
concluded that:

“the perception of normal and benign somatic
symptoms (physical and mental) by both subjects
and health professionals was heightened and
subsequently attributed to an external cause, such
as poisoning”

were demonstrably erroneous.

Twenty-five years after the catastrophe, the UK
Government apologised to those affected
“unreservedly” for the way in which the incident was
dealt with at the time (BBC News Cornwall, 19th
September 2013).

It remains to be seen if Simon Wessely will also
apologise unreservedly to those whom he denigrated
by dismissing their symptoms as anxiety. Quite how
hair, skin and nails turning blue, and bone biopsies
showing stainable aluminium over six months later could
possibly be due to anxiety has not been explained by
Wessely.

       Again, Wessely has been proved wrong in
       ascribing serious and chronic physical
       ill-health to aberrant perception not only by
       those afflicted but also by those medical
       professionals who supported them.

Interstitial cystitis

In 2009 the BMJ carried a well-structured Clinical
Review of interstitial cystitis/bladder pain syndrome
(Serge Marinkovic et al: BMJ 2009:339:337-342) in
which the authors provided a compelling case – based
on evidence of bladder epithelial damage and related
blood vessel transitions activating mast cells and
generating an autoimmune response – of likely
autoimmune causation.

At once Wessely sprang into action, rejecting outright
any autoimmune or allergic component and noting the
association with chronic fatigue syndrome, asserting
that there was “good evidence” for the role of
psychological factors in both the aetiology or
maintenance of both conditions and stating that
physical pathology cannot fully account for the
symptoms (http://bit.ly/HrzI4E ).

He criticised Marinkovic for resisting in his review his
(Wessely’s) own proposition that they are simply part
of one functional somatic syndrome in which
psychological factors contribute to the aetiology and
for omitting to mention  that psychological
interventions (CBT) deserve a place in any review of
the disorder (see http://bit.ly/HrzPxf)

In 2012 it was established that patients with interstitial
cystitis/painful bladder syndrome demonstrated
measurable systemic dysfunction, with central and
autonomic nervous system disorders and high rates of
syncope as well as gastrointestinal dysfunction
(Chelimsky G et al. Front Neurosci 2012:6:114: Epub 10
August 2012).

In October 2013, researchers again proved Wessely
wrong (Jiang Y-H et al; Increased Pro-Inflammatory
Cytokines, C-Reactive Protein and Nerve Growth Factor
Expression in Serum of Patients with Interstitial
Cystitis/Bladder Pain Syndrome: PLoS ONE 8(10):
e76779. doi:10.1371/journal.pone.0076779).

They demonstrated increased pro-inflammatory
cytokine/chemokine (IL-1bèta, IL-6, TNF-alfa and IL-8)
expression in the sera of IC/BPS patients, implying not
only mast cell activation but also that other
inflammatory mediators play important roles in the
pathogenesis, and supporting the fact that interstitial
cystitis/bladder pain syndrome is now considered a
chronic inflammatory disease.

Conclusion

Wessely’s attempts to re-classify as a single
somatoform disorder various disparate physical
syndromes have failed.

       As the Countess of Mar et al so concisely
       commented, the Maddox Prize was:
       “awarded to the defender of a hypothesis
       with no evidence-base rather than to
       someone who was upholding true scientific
       inquiry”.

There are many who maintain that, contrary to
“standing up for science”, the award to Wessely
militates against medical science and actively devalues
it.

 

-----

30-10-2013

PLEASE SHARE!

The CDC, HHS and Kathleen Sebelius have been hiding
an epidemic illness that is robbing millions of people of
their quality of life - taking away their ability to work
and to socialize - and sometimes taking their lives.

There is a long ugly history of government mistreatment
of people who suffer from this illness.

The illness is Myalgic Encephalomyelitis (M.E.),
sometimes incorrectly called "Chronic Fatigue Syndrome
(CFS)" and most recently called ME/CFS.

This disease afflicts somewhere between 1 and 4 million
people in the U.S. and 17 million worldwide (See
http://bit.ly/17d7uqz and http://1.usa.gov/1dMxDOD)

This is a very serious and debilitating illness and the
economic cost can be staggering.

According to a 2004 CDC study, the illness costs every
American with CFS about $20,000 a year in lost
earnings and productivity.

This means ME costs the United States at least $9.1
billion a year, not counting the cost of health care or
disability benefits. This economic cost is in addition to
the cost in terms of human lives and misery.

NIH reports spending $5 million to $6 million annually on
ME/CFS research.

This compares with $115-$137 million annually it spends
on Multiple Sclerosis, an equally devastating disease.
See: http://1.usa.gov/1g11ggL

Now, in this time of government austerity, when the
government has been shut down due to budget
constraints, HHS Secretary Kathleen Sebelius' agency
has signed a contract estimated to cost at least one
million dollars to the Institute of Medicine (IOM) to
redefine ME/CFS.

This is being done in spite of the fact that 50 (originally
35) well-respected researchers and clinicians, experts
in ME/CFS wrote an Open Letter asking Secretary
Sebelius not to sign this contract but to use a
consensus definition by experts and unanimously
recommended by the 50 ME/CFS experts
( http://bit.ly/1dMzbYJ)

Ms. Sebelius is choosing to ignore the opinions of
experts in order to spend a million dollars to have
strangers to this illness define its symptoms.

This defies logic.

HHS is spending a million dollars for the IOM to do
something which has already been done by experts
over a period of 20+ years, at no cost to the
government!

ME/CFS patients are protesting this spending. Please
sign the Petition: ( http://bit.ly/1gzpX1w) but so far
Ms.

Generally, the US government works very slowly, but
this time they are moving at lightening speed, even
though the government has been shut down.

This decision will affect every M.E. patient, regardless
of where they live.

       If the USA adopts a "garbage" definition for
       M.E. like the IOM definition for "Chronic
       Multisymptom Illness," formerly called "Gulf
       War Illness," that will start the use of a
       psychological definition for M.E. - which will
       spread to other countries and have a
       "domino effect" on the diagnosis and
       treatment of M.E. all over the world.

The time to stop this is now! Everyone can help to 
stop this IOM contract!

More detailed information is here: http://bit.ly/1dMB6fZ

National Alliance for Myalgic Encephalomyelitis

http://bit.ly/17d7uqz

[] 

Sign the Petition - also in Europe and 
the rest of world:  http://bit.ly/1gzpX1w

-----

28 oktober 2013

http://bit.ly/17d5uyl

National Alliance for Myalgic Encephalomyelitis
                          
HHS/IOM Contract CAN BE TERMINATED!

October 27, 2013

National Alliance for Myalgic Encephalomyelitis
www.name-us.org

(Permission to be widely distributed in full.)

We were advised by a member of the ME/CFS research
community to expedite this info to a number of ME/CFS
advocacy organizations, advocates, and the ME/cfs
community in general.

Government Contracts Contain a Clause Commonly
Known as “Government Termination for Convenience”:

Federal Acquisition Regulation (FAR) - PART 49
“TERMINATION OF CONTRACTS”, SUBCHAPTER g,
SUBPART 49.1, Subsection 49.101 Authorities and
Responsibilities (a) and (b) explicitly states:

(a) The termination clauses or other contract clauses
authorize contracting officers to terminate contracts
for convenience, or for default, and to enter into
settlement agreements under this regulation.

(b) The contracting officer shall terminate contracts,
whether for default or convenience, only when it is in
the Government's interest.
        

Contents:

Brief Background ( http://bit.ly/17mo3Ai)

Call to Action and Pertinent Legal Info
( http://bit.ly/17mo7jv) (with reference links)

Justification for Termination ( http://bit.ly/17mo9YN) -
Top 10 “in the Government’s interest”

-----

24 oktober 2013

Canaray in a Coal Mine
by Jennifer Brea

A film about life with M.E., the most
prevalent and devastating disease
your doctor has never heard of.

http://kck.st/1bcXNVM

-----

23 oktober 2013

Due to the shutdown of the federal government, the
next CFSAC meeting is being postponed until December
10-11, 2013 from 12:00 p.m. to 5:00 p.m. (EDT). 

The agenda will be posted on the CFSAC website no
later than November 15, 2013.

We now have the capacity to accept pre-recorded
video testimony for public comment and will continue
to schedule public comment via phone and accept
written submissions. 

The Federal Register Notice will be posted no later than
November 18 and include detailed instructions for
joining the webinar and requesting public comment. 

Information will also be posted on the CFSAC website at
www.hhs.gov/advcomcfs.
 
Please know that we value your involvement and regret
any inconvenience that this delay may have caused
you. 

Thank you for your patience as we work through this
challenging time. 

Thank you,

CFSAC Support Team

The CFSAC Support Team

http://1.usa.gov/14E2Gqa

Sign up for the CFSAC listserv to receive the latest
updates about CFSAC:

http://1.usa.gov/1bczt69

Learn more about the Health Insurance Marketplace at
HealthCare.gov!

-----

23 oktober 2013

Reminder: nominations for CFSAC 
members are due by 5pm ET on Oct. 28.
        

The Office of the Assistant Secretary for Health
(OASH), within the Department of Health and Human
Services (HHS), is seeking nominations of qualified
candidates to be considered for appointment as a
member of the Chronic Fatigue Syndrome Advisory
Committee (CFSAC).

CFSAC provides advice and recommendations to the
Secretary of HHS, through the Assistant Secretary for
Health (ASH), on a broad range of issues and topics
related to myalgic encephalomyelitis/chronic  fatigue
syndrome (ME/CFS).

The appointments of several Committee members are
scheduled to end during the 2014 calendar year.

Nominations of qualified candidates are being sought to
fill the positions that are scheduled to be vacated.

The Committee composition consists of seven scientists
with demonstrated expertise in biomedical research
applicable to ME/CFS, four individuals with
demonstrated expertise in health care delivery, private
health care services or insurers, or voluntary
organizations concerned with the problems of
individuals living with ME/CFS.

The vacant positions cover all of these categories.

To qualify for consideration of appointment to the
Committee, an individual must possess demonstrated
experience and knowledge in the designated fields or
disciplines, as well as expert knowledge of the broad
issues and topics pertinent to ME/CFS.

Individuals selected for appointment to the Committee
will serve as voting members and can be invited to
serve terms of up to four years.

As Special Government Employees, committee members
receive a stipend for attending Committee meetings.
Committee members also are authorized to receive per
diem and reimbursement for travel expenses incurred
for conducting Committee business.

Nomination materials should be typewritten, 12-point
type, and double-spaced. If mailed, please submit
original documents.

The nomination materials should be submitted
(postmarked or received) no later than 5:00p.m. ET on
the date specified under DATES.

The following information must be part of the
nomination package submitted for each individual being
nominated:

(1)  a letter of nomination that clearly states the name
and affiliation of the nominee, the basis for the
nomination (i.e., specific attributes which qualify the
nominee for service in this capacity), and a statement
that the nominee is willing to serve as a member of the
Committee;

(2) the nominator's name, address, and daytime
telephone number, and the home and/or work address,
telephone number, and e-mail address of the individual
being nominated; and

(3) a current copy of the nominee's resume or
curriculum vitae.

Federal employees should not be nominated for
consideration of appointment to this Committee. 
An individual may self-nominate.

The Department makes every effort to ensure that the
membership of Federal advisory committees is fairly
balanced in terms of points of view represented and
the committee's  function.

Every effort is made to ensure that a broad
representation of geographic areas, females, ethnic
and minority groups, and people with disabilities are
given consideration for membership on Federal advisory
committees.

Appointment to this Committee shall be made without
discrimination on the basis of age, race, ethnicity,
gender, sexual orientation, disability, and cultural,
religious, or socioeconomic status.

Nominations must state that the nominee is willing to
serve as a member of CFSAC and appears to have no
conflict of interest that would preclude membership.

Potential candidates are required to provide detailed
information concerning such matters as financial
holdings, consultancies, and research grants or
contracts for an ethics analysis to be conducted to
identify potential conflicts of interest.

ELECTRONIC SUBMISSIONS:  

Nomination materials, including attachments, may be
submitted electronically to cfsac@hhs.gov. Telephone
and facsimile submissions cannot be accepted.

DATES: 

Applications for individuals to be considered for
appointment to the Committee must be received no
later than 5 p.m. ET on October 28, 2013 at the
address listed below.

ADDRESSES:  

All nominations should be mailed or delivered to Martha
Duncan Bond, Alternate Designated Federal Officer,
Chronic Fatigue Syndrome Advisory Committee, Office
on Women's Health, Office of the Assistant Secretary
for Health, Department of Health and Human Services,
200 Independence Avenue, SW, Room 719E,
Washington, DC 20201. Nomination materials, including
attachments, may be submitted electronically to
cfsac@hhs.gov

FOR FURTHER INFORMATION  CONTACT:  

Martha Duncan Bond, Alternate Designated Federal
Officer, Chronic Fatigue Syndrome Advisory Committee,
Office on Women's Health, Office of the Assistant
Secretary for Health, Department of Health and Human
Services, 200 Independence Ave., SW, Room 719E,
Washington, DC 20201.  Inquiries may also be made to
cfsac@hhs. gov

SUPPLEMENTARY INFORMATION:

CFSAC was established on September 5, 2002. The
purpose of the CFSAC is to provide advice and
recommendations to the Secretary ofHHS, through the
ASH, on issues related to ME/CFS.  CFSAC advises and
makes recommendations on a broad range of topics
including:

(1)  the current state of knowledge and research; the
relevant gaps in knowledge and research about the
epidemiology, etiologies, biomarkers, and risk factors
relating to ME/CFS; and potential opportunities in
these areas;  

(2)  impact and implications of current and proposed
diagnostic and treatment methods for ME/CFS;

(3)  development and implementation of programs to
inform the public, health care professionals, and the
biomedical, academic, and research communities about
ME/CFS advances; and

(4) strategies to improve the quality of life of ME/CFS
patients. Management and support services for
Committee activities are provided by staff from the
Office on Women's Health, which is a program office
within the OASH.

The CFSAC charter is available at
http://www.hhs.gov/advcomcfs/charter/index.html

The CFSAC Support Team

http://www.hhs.gov/advcomcfs/index.html

 
Sign up for the CFSAC listserv to receive the latest
updates about CFSAC:

http://www.hhs.gov/advcomcfs/cfsac_email_list.html

 

Learn more about the Health Insurance Marketplace at
https://www.healthcare.gov/

 

-----

 

11 oktober 2013

Attention network test: Assessment of
cognitive function in chronic fatigue
syndrome.

http://1.usa.gov/1bNYMR4

-----

11 oktober 2013

Simmaron is Producing Results

Simmaron's spinal fluid studies take center
stage as Dr. Lipkin announces evidence of
biomarkers, immune activation, and
disease progression

http://bit.ly/18VBFQ3

-----

11 oktober 2013

Stop the IOM; 
Team Up with Gulf War Veterans

Patient advocate Wildaisy has started a petition
to stop the Institute of Medicine (IOM)
contract to redefine ME. If the IOM contract
goes forward, chances are good that ME will go
the way of Gulf War Syndrome, which was
pathetically redefined at the beginning of the
year as chronic multisymptom illness (CMI).

The recommended treatments included cognitive
behavioral therapy, graded exercise and
antidepressants--the same recommendations
CDC gives ME patients now.

CFIDS Association Suzanne Vernon is supposed
to be appointed to the IOM committee to study
ME. On September 28, I wrote to Suzanne
Vernon for a comment. She did not respond.

Bona fide ME experts have already signed an
earlier petition to halt the IOM and adopt the
Canadian Consensus Criteria to define ME.
Despite the impressive effort, there has been
no response from HHS Secretary Kathleen
Sebelius.

If you want to join the effort to stop IOM, here
is what the new petition says and the link to it:

"We, the undersigned people suffering from
Myalgic Encephalomyelitis, along with our
families, carers and friends hereby ask Secretary
Kathleen Sebelius to cancel the contract HHS
signed with the Institute of Medicine (IOM) to
develop “clinical diagnostic criteria” for ME/CFS.

We further urge Secretary Sebelius to respect
the consensus reached by a group of experts
supporting the adoption of the Canadian
Consensus Criteria (CCC) as the research and
clinical case definition for ME/CFS."

Link to petition: http://bit.ly/GFkfgJ

-----

10 oktober 2013

Clearing the Air, or Breaking Wind?

A Comment on Suzanne Vernon

Note:You can sign the petition in
support of the doctors' letter
HERE. You can sign the
petition to support adoption
of the CCC HERE:
http://bit.ly/GFkfgJ

Yesterday, Suzanne Vernon posted an
article on Research First
( http://bit.ly/1g0Zw7n) in which she
attempted to respond to accusations
( http://bit.ly/1cviq3H) that the CFIDS
Association of America (CAA) had
pressured the signatories of the HHS
doctors' letter ( http://bit.ly/1g0ZRGX)
into withdrawing their support for the
immediate adoption of the Canadian
Consensus Criteria and rejection of
the IOM contract.

Although the letter sent by the CAA
did not directly ask the doctors to
rescind their signatures, it was clear
that asking if they "still agreed" was
intended to instill doubt. (Not to
mention, why send an email to all of
the signatories, unless the purpose is
to get them to change their minds?)

The letter worked in at least one case:

Lucinda Bateman
( http://bit.ly/1g107py) withdrew her name from
the letter, stating that:

"This is an opportunity to build a strong federal
base of support from NIH/IOM."

Echoing that sentiment.

Or perhaps inspiring it, Vernon says:

"We must have the cooperation and
involvement of the various federal agencies to
increase research funding and achieve real
progress."

What is lacking from these pronouncements of
faith in the IOM's ability to validate and fund
future research:

"based on clear identification of gaps in our
knowledge, review of our current evidence
base, and creative thinking about how to move
forward" is any *contact with reality*.

Philosopher George Santayana is reputed to
have said, "Those who cannot learn from
history are doomed to repeat it."

History, in the case of ME/CFS, has proven that
our federal agencies (HHS, CDC, NIH) have
absolutely no interest in accurately defining the
illness, funding research, or including patients in
decision-making processes - much less
"creative thinking about how to move forward."

Let's take a brief look at the history of how
federal agencies have dealt with ME/CFS:

*) The CDC has never tried to come up with
an accurate case definition.

The current CDC case definition ("Fukuda") has
been critiqued for decades by all of the
reputable ME/CFS specialists and researchers
as being too vague.

This vagueness was intentional.

The Fukuda definition was designed to stymie
the ability of physicians to correctly diagnose
the illness, ultimately leading to
under- eporting.

This was a boon to insurance companies, which
did not want to pay for yet another expensive
epidemic (i.e. AIDS).

It was not until advocates began pressuring HHS
to adopt the Canadian Consensus Criteria -
which were developed by independent
researchers and ME/CFS doctors - that the
HHS responded.

Their response was to ignore the experts, and
assign the case definition to people who not
only know nothing about the illness, but have a
vested interest making sure the definition stays
vague and broad enough to classify ME/CFS as
a form of "fatigue."

*) The NIH has never funded this illness.

It is well known that the funds awarded to
studying "CFS" in the 1980s were diverted to
measles, alcoholism and other "fatiguing"
conditions.

That trend has continued. In 2009
( http://1.usa.gov/1g11ggL), nothing was
awarded for research into "CFS."

In 2010, again - not one penny. In 2011, $6
million was awarded, which, while better than
nothing, did not even come close to
researching an illness that affects more people
than AIDS ($3 billion), lung cancer ($233
million) and breast cancer ($800 million)
combined.

Does the CAA really believe that because of the
IOM contract the NIH is going to turn around
and award $4 billion to research on ME/CFS?

(I can hear the laughter, but strictly by
prevalence, $4 billion is what we should get.)

*) The HHS has never included patients in
their decisions regarding ME/CFS.

Patients were not consulted to formulate the
Fukuda definition. We were not consulted when
awarding funds for research.

We certainly weren't consulted about the IOM
contract.

The idea that we are now going to be "at the
table" is simply ludicrous.

I suspect that by making this claim Vernon is
referring to her own dinner invitation.

In spite of the fact that Vernon's expertise with
the illness in no way compares to that of any of
the people who stood by their signatures, she
will be part of the team that determines our
fate.

Why?

For one thing, her previous work with the CDC
not only supported the Fukuda definition
[Chronic Fatigue Syndrome – A clinically
empirical approach to its definition and study
( http://1.usa.gov/1g128C9)], but advocated
the use of questionnaires for diagnosis, rather
than objective measurements.

It is not at all surprising that, given her
predilections, Vernon does not consider PEM
(post-exertional malaise) as a hallmark
symptom of ME/CFS.

(She also believes that if we slept more we
would be "less tired.")

With Vernon on the IOM committee we can
expect no less than a definition that essentially
eliminates ME/CFS as a disease entity.

Why on earth would anybody - given this
30-year history - think that the IOM (an
organization that has already stated it believes
ME/CFS is a subcategory of "fatiguing
illnesses") will open up federal doors?

Why would funding suddenly flow for "fatigue"?

And why would research be more valid with
cohorts composed of people with "chronic
fatigue"?

But, perhaps most important of all, why did the
CAA it use its clout as a national CFIDS
organization to pressure doctors into supporting
the IOM contract, an arrangement that will
benefit nobody in the ME/CFS community?

Does the CAA speak for the ME/CFS
community, or is it simply speaking for
itself?

-----

8 oktober 2013

Dr. Mikovits' response to the CAA                                                                                                                
From Wildaisy Fl (mecfsforums)
        
The CFIDS ASSociation
did contact Dr. Mikovits.

Here is what she said when I asked her if the
CAA had contacted her and asked her to
withdraw her support from the Open Letter to
Secretary Sebelius:

Yes they did and below is the response I sent:

To whom it may concern:

I absolutely stand by my work of the last 7
years including my signature on the letter to
secretary Sebelius of 9/23 regarding the case
definition of ME/CFS.

I know that the CAA is not and has never in my
experience responded to concerns expressed by
the patients nor do they now or have they ever
served in the best interests of the patients as
is the only duty of an advocacy organization.

This IOM contract is simply a waste of precious
resources.

I stand by my signature on the letter and my
work which is now always has been and will
always be in the best interests of the patients.

Sincerely,

Judy A Mikovits, PhD"
        

http://bit.ly/1gp2tMI

-----

8 oktober 2013

Post-exertion malaise in chronic
fatigue syndrome: symptoms and
gene expression

http://bit.ly/19gUBJL

-----

8 oktober 2013

AVAAZ.org Community petitions

The world's largest and most effective
online campaigning community for change

To be delivered to: Kathleen Sebelius,

Secretary of Health and Human
Services, United States of America

Stop the HHS-IOM contract and 
accept the CCC definition of M.E.

http://bit.ly/GFkfgJ

-----

7 oktober 2013

UPDATE ON AETIOLOGY,
DIAGNOSIS AND MANAGEMENT
        
5th December 2013
Venue:
Royal Station Hotel
Newcastle

"A must for any healthcare professionals
 working or interested in the field of Chronic
 Fatigue Syndrome or Myalgic
 Encephalomyelitis"

http://bit.ly/1agNX4u

-----

7 oktober 2013

TubeChop - Committee Discussion (Part #2)
on Day 2 (CFSAC Spring 2013) (12:33)


Interesting discussion about the Canadian
Consensus Criteria.

How members of the Chronic Fatigue
Syndrome Advisory Committee (CFSAC) are
intimidated.

It is realy shameless.

http://www.tubechop.com/watch/1278896
 

-----

4 oktober 2013

Spinning Around- CAA Putting
Political Spin on the IOM

http://bit.ly/1fNASa1

-----

30 september 2013

[]

CDC's Two-Day Exercise Test: Not Negotiable

-----

29 september 2013

CFIDS Association Asking Signatories
to Withdraw Endorsement of CCC

Posted on September 28, 2013    

I know this for a fact, but can’t disclose my
source:

The CFIDS Association of America (“CAA”) has
contacted at least some, maybe all, of the 35
signatories of the letter addressed to the HHS
regarding the adoption of the CCC asking them to
withdraw their endorsement of the Canadian
Consensus Criteria (“CCC”).

Also, Suzanne Vernon/the CAA is a beneficiary of
the IOM contract.

The CAA sent their requests yesterday and asked
the signatories to comply by noon today.

This is puzzling not only because it is directly and
brazenly adverse to the patients’ interest, but also
because the CAA claims to be purely a research
organization now and not an advocacy group
anymore.

Yeah, right. And the deadline: I mean, really?!

Ms. Vernon’s involvement with the IOM contract is
a blatant conflict of interest in asking the
signatories to reverse course.

I have to say: It would be hard for me to be more
disgusted at this point.

http://bit.ly/1bPRHPc        

-----

27 september 2013

Chronic fatigue treatment trial

People want to learn as much as
possible from the PACE trial for
chronic fatigue syndrome

http://bit.ly/1bcZtQh

-----

27 september 2013

Effects of Time Frame on the Recall
Reliability of CFS Symptoms

http://1.usa.gov/1fMFXgr

-----

27 september 2013

The Emerging Role of Autoimmunity in 
Myalgic Encephalomyelitis/Chronic 
Fatigue Syndrome (ME/cfs).

http://1.usa.gov/1fuov2A

-----

24 september 2013

Differing leukocyte gene expression
profiles associated with fatigue in patients
with prostate cancer versus chronic
fatigue syndrome.

http://bit.ly/15qpI17

-----

24 september 2013

Status Update for the
IiME/UCL Rituximab Clinical Trial

When Invest in ME announced in June that we were
planning a UK trial of rituximab for ME there was a
great deal of interest raised.

The rituximab trial follows the exciting work which has
been, and is being performed in Norway by the
Haukeland University hospital researchers Professor
Olav Mella and Dr Oystein Fluge.

Since these excellent Norwegian researchers came to
present at the Invest in ME conferences in 2011 we
have followed their progress, and invited them back
every year for our BRMEC researchers meetings and
IIMEC* conferences.

The research work has been backed up by impressive
and dedicated patient advocacy by the Norwegian ME
Forening which has raised the profile of ME in Norway
and throughout the world. Their tireless work has
encouraged IiME. The more recent success of the ME
and You campaign to raise funds for the Norwegian
research has created real hope amongst patients.

At the IIMEC7 conference IiME announced our intention
to work toward establishing a clinical trial of rituximab
in UK [1].

In updates published through July and August IiME has
stated that all that is required for the trial to proceed
is the funding. In the spirit of cooperation we have
stated that support for the trial was welcome and that
IiME would acknowledge all such support.

Our supporters have risen to the occasion and valiantly
supported the IiME/UCL trial with wonderful
enthusiasm. The imaginative Let’s Do It For ME
campaign has continued to produce ideas to raise
funds and awareness and The MATRIX is an example of
a unique method of achieving both.

We have had donations from around the world, ranging
from £1 to £3,000. We have had a very generous
donation of £25,000 from a foundation and this has
allowed the funds raised to grow to £59,000 in a very
short space of time. We have also had fantastic moral
support from a great many.

As such, IiME and our supporters have managed to
initiate and organise something which many thought
was not possible.

IiME made it clear from the beginning that we welcomed
support for the IiME/UCL clinical trial from other
organisations. Our objective is to ensure that a clinical
trial of rituximab is allowed to be performed by the best
researchers possible and to ensure that this trial makes
a valuable contribution to the collective research pool.

This is why we have been keen from the beginning, and
since our inception as a charity, to initiate
collaboration with other like-minded international
charities and organisations, and build collaborations
between ME researchers across continents.

We believe in achieving results by the most direct
method, where possible. For IiME the issue of making
rapid progress in ME research is important, it is
personal. The need is here - the need is now.

We arranged a specific web site which has been set up
to inform on all aspects of the UK rituximab trial.
This is at:

www.ukrituximabtrial.org

and we reiterated the current status [2]

*) We have the facilities available.

*) We have the researchers available.

*) We have the best expertise possible available.

*) We have the means of fundraising for this trial
    available (see The MATRIX [3] ) and we have a
    campaign to raise funds

*) We have emphasised that the only remaining element
    required was funding

We have reached this position thanks to the vision,
efforts and help from Professor Edwards, Dr Cambridge,
UCL and our supporters.

Thanks to the amazing efforts of our supporters we
have been able to agree already to initiate a
preliminary study on B-cells at UCL.

Professor Edwards will shortly visit Bergen – a trip
arranged by IiME as part of our collaborative attempts
to unite researchers and build on experience.

We can now announce that IiME have been given a
pledge of £200,000 from a foundation to supplement
the amount we have raised already.

This would bring our rituximab fund to almost £260,000
– that is over two-thirds of the requirement for the
clinical trial to proceed.

The foundation has made two conditions to this pledge

*) That IiME continue to be the lead patient
    organisation steering this trial
*) That IiME continue to raise funds for the remaining
    £90,000 that is required for the full trial to proceed

The trustees of IiME have accepted these conditions
willingly.

We are thankful and grateful for this extraordinarily
generous offer from the donating foundation. It is an
amazing gesture from compassionate and caring people
who want to make a difference. It allows the hopes of
many patients to become a reality – allows a vision to
be maintained that there is a future for ME patients
and that we, patients and families, can make a
difference.

We have communicated this to the UCL team with
whom we are working to make this trial a reality.

We are now distributing this information to our
supporters.
        

There were many who doubted that IiME and our
supporters could achieve this. Though we knew this
would be a daunting task we have never doubted it
was possible.

We continue our efforts to raise the remaining funds.

To our supporters who have been with us since the
beginning and everyone who has contributed in so
many ways to this trial we want you to know this is
your result. It is what you have achieved. It is what
we have achieved together.

We thank all those who are supporting this trial and we
will continue to provide information on the status of
the trial as we progress.

We continue to welcome support. Please contact IiME
directly if you or your organisation would like to assist
or contribute.

If anyone would like to ask any questions about the UK
rituximab trial then please use the Contact form on the
rituximab web site [4].

A status is available [5].

With this trial we can take a huge leap forward in ME
research.

If you are also interested in the other research projects
that Invest in ME is  organising and/or funding please
see our main website and free newsletter [6].
 

Let’s Do Research! Let’s Do It For ME!

Thank You.

References:

1:  http://bit.ly/14DY1ol

2:  http://bit.ly/14DYbfq

3:  http://bit.ly/14DYmYa

4:  http://bit.ly/14DYtTF

5:  http://bit.ly/14DYbfq

6:  http://bit.ly/1f7k9y7

Invest in ME                                           

September 2013

````````````
Legal Information

Invest in ME
PO Box 561
Eastleigh
Hampshire SO50 0GQ
UK
Phone: +447759349743
E-mail: info@investinme.org

UK Charity Nr. 1114035

www.investinme.org
 

-----

24 september 2013

On September 23, 2013 the HHS published the
ridiculous Announcement about the *NEW* IOM Study
on Diagnostic Criteria for ME/CFS
( http://bit.ly/16nX4Um)

On the same day world's most important biomedical
researchers and clinicians with expertise in the disease
of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
(ME/CFS) wrote an open Letter to Secretary of the
HHS Kathleen Sebelius to announce, that they have
reached a consensus on adopting the Canadian
Consensus Criteria (CCC) as the research and clinical
case definition for ME/CFS ( http://bit.ly/16nXpGA).

Mary Dimmock one of our most important ME/CFS
advocates wrote an excellent *Open Letter to
Kathleen Sebelius*:

HHS Udermining years of scientific
research with IOM contracy.....!!!!  

SHE ASK US: 

"Tell HHS to Stop the New IOM Contract
and Tell HHS Not to Redefine ME/CFS!"  

-----

7 september 2013

The next CDC CFS Patient-Centered
Outreach and Communication Activity
(PCOCA) Conference Call will be on
September 10th. 

Please see the CDC website for additional
information.

http://www.cdc.gov/cfs/meetings/cfspcoca.html

-----

5 september 2013

*NIH- Diagnostic Criteria for ME/CFS*
From: OS OPHS CFSAC (HHS/OPHS)
<CFSAC@HHS.GOV>
Help ME Circle, 4 September 2013
CO-CURE@LISTSERV.NODAK.EDU       
http://bit.ly/1dICvE1

*Stop the proposed IOM-ME/CFS Study!*
By Mary Dimmock
http://bit.ly/1fzs4zj
Help ME Circle,  4 September 2013
CO-CURE@LISTSERV.NODAK.EDU
http://bit.ly/1dICPme
        

-----

4 september 2013

ME/CFS on Verge of Being
Defined Out of Existence

http://bit.ly/1fzs4zj

-----

4 september 2013

Diagnostic Criteria for ME/CFS

This email is to inform you about HHS’ ongoing
efforts to address the 2011 CFSAC recommendation
“to reach a consensus for a case definition useful
for research, diagnosis and treatment of ME/CFS.”  

In response, NIH will be convening an
Evidence-based Methodology Workshop, which
would address the issue of case definitions
appropriate for ME/CFS research, and that HHS
was actively pursuing options for a separate effort
that would result in a case definition useful for
clinicians. 

Because the use of and audience for case
definitions for research and clinical care are very
different, it is important to have separate
processes to develop them.

HHS is actively pursuing a contract with the
Institute of Medicine (IOM) to convene a
consensus committee to develop recommendations
for clinical diagnostic criteria for ME/CFS as
recommended by CFSAC. 

The IOM is unique in the prestige and authority it
possesses among U.S. clinicians, researchers and
the public.

The reports and recommendations released by the
IOM are widely accepted and get extensive
coverage in both professional and mainstream
media.

The IOM has a singular reputation as the gold
standard for providing biomedical recommendations
on difficult, complex and controversial questions in
clinical medicine.

As the most respected source for medical
consensus, the IOM is in a position to bring
together experts, the ME/CFS community, and
other stakeholders to develop diagnostic criteria for
ME/CFS, so that more clinicians can help patients
receive the medical care they need and deserve.

Thanks for your support.

```````````````````
The CFSAC Support Team

http://www.hhs.gov/advcomcfs/index.html

-----

13 aug 2013

‘Recovery’ in PACE, the 6
Minute Walking Test and
Other Issues:

How Well Can ‘Recovered’ Patients Walk?

http://bit.ly/120cGZC

-----
 

8 aug 2013

Kynurenine Pathway Pathologies: do
Nicotinamide and Other Pathway
Co-Factors have a Therapeutic Role
in Reduction of Symptom Severity,
Including Chronic Fatigue
Syndrome (CFS) and Fibromyalgia
(FM).

http://1.usa.gov/17944Qc

 

-----
 

6 aug 2013

Contrasting Chronic Fatigue Syndrome versus
Myalgic Encephalomyelitis/ Chronic Fatigue  Syndrome

Jason LA, Brown A, Evans M, 
Sunnquist M, Newton JL.

http://1.usa.gov/14gcSF5

 

-----
 

30 juli 2013

From: Simon Lawrence        

The 25% M.E. Group

Please support this initiative and send the
following Press Release to you local and/or
national newspaper

PRESS RELEASE

8th August

Severe Myalgic Encephalomyelitis
Understanding and Remembrance Day

'I am a ghost in the land of the living – forgotten,
ignored and drifting on the edges of life, whispering
my message in the ears of the lucky ones who can
participate in life. I have Myalgic Encephalomy-
elitis. I call it paralysis, muscle and cardiac failure,
brain injury, a living plague that kills only slowly,
but does kill...

Aylwin (Jennifer) Catchpole,
who died in August 2010

Why have an Understanding and Remembrance
Day highlighting the plight of the severely
affected?

The severity of this illness often makes it impossible
for people to have contact with loved ones,
doctors, or the outside world. This is a group of
thousands of people in the UK who are generally
invisible. People with the severe forms of this
disease can no longer pursue their careers,
hobbies, or everyday lives.

In helping us to make visible the stories of people
living with severe M.E., and of those who have died
as a result of the illness, you can help end years of
misrepresentation about M.E. and increase the
understanding of the general public, who often
underestimate the seriousness of the disease.

This ignorance causes much suffering to those with
M.E., who have a double battle, not only with the
disease itself, but also to get the illness taken
seriously by those around them. There is an urgent
need to raise awareness.

What's the significance of 8th August?

       []

This is the birth date of Sophia Mirza. Sophia was
bed-bound with severe Myalgic Encephalomyelitis
and was a victim of medical abuse.

Her doctors did not believe that Myalgic
Encephalomyelitis was a physical disease and so
she was forcibly taken from her bed/home by social
workers, police officers and doctors, and kept in a
psychiatric facility where she received
inappropriate treatment and care.

Sophia subsequently died
of M.E. at the age of 32.

       Her post-mortem revealed widespread
       inflammation in the spinal cord. This same
       inexcusable abuse still goes on.

Emily Collingridge - 17th April
1981 - 18th March 2012

“When our daughter, Emily, died in 2012, my
husband and I were overwhelmed by the hundreds
of messages of sympathy we received, even from
people we did not know.

They came from friends, from those expressing
gratitude for her endless campaigning to spread
awareness of ME and from readers of her guide to
living with severe M.E., many of whom said it had
changed their lives.”

The inquest into Emily’s death took place on 24th
May 2013. In her summary the Coroner referred to
ME as a condition which is not understood, and
expressed the need for more research.

       She was echoing an appeal made by Emily in
       2011 highlighting what she described as “the
       scandalous lack of research into the most
       severe form of M.E. and the lack of
       appropriate support for those suffering from
       it.”

A final plea in Emily’s own words.

“Please put an end to the abandonment of people
with severe ME and give us all real reason to
hope”.

Emily may have lost her personal battle, but her
battle on behalf of all those still suffering from
severe ME should not be ignored.

Further information

What is Myalgic Encephalomyelitis?

Myalgic Encephalomyelitis literally means muscle
pain (myalgia) with brain and spinal cord
inflammation (encephalomyelitis).
It is a complex neurological illness.

       The most characteristic distinguishing feature
       is that symptoms are exacerbated by activity
       and sensory stimuli beyond the patient's
       limitations.

       Activities that trigger flare-ups can be tiny by
       healthy standards, depending on the severity
       of the illness. Simple things like talking,
       watching a TV programme, or eating a meal,
       can cause an exacerbation.

Dysfunction has been found in all the
major systems - neurological, immune,
endocrine, cardiovascular,
musculoskeletal, gastrointestinal,
respiratory, and genito-urinary, which is
why people with Myalgic
Encephalomyelitis can have such a wide
range of symptoms.

Common symptoms include widespread
pain, cognitive dysfunctions (e.g.
problems with concentration and
memory), disabling sensitivities to
everyday stimuli (such as light and
noise), difficulty being upright (including
sitting up in bed), sleep disorders and
gastrointestinal problems.

You can read Sophia's story here:
www.sophiaandme.org.uk

Her story also features powerfully in the film 'Voices
from the Shadows' which is available from:
www.voicesfromtheshadowsfilm.co.uk

Emily also wrote an informative book entitled:

'Severe ME/CFS: A Guide to Living' which can be
found at:  www.severeme.info

Further website information can be found at:
http://tinyurl.com/oasltvy

The parents of those mentioned in this Press
Release are happy to be contacted by members of
the Media. This can be arranged through
contacting the 25% ME Group, (the national
support group for severely affected ME Sufferers).
Contact details below.

25% ME GROUP
21 CHURCH STREET
TROON
AYRSHIRE, KA10 6HT
Tel: 01292 318 611
www.25megroup.org
E-MAIL: enquiry@25megroup.org

-----
 

28 juli 2013

BMC Immunolggy
Research article

A comparison of sex-specific
immune signatures in Gulf War
illness and chronic fatigue
syndrome

http://bit.ly/12uPXaw
 

-----

2 mei 2013

Kees Kooman, de auteur van het boek *Gebroken
leven* is zaterdag 11 mei in de uitzending van Tros
Nieuws Show bij Mieke van de Weij.

Dit programma is op radio 1 van 8.43 tot 11.04 uur.

-----

1 mei 2013, Gebroken leven

De ontwrichtende ziekte ME/CVS

Journalistiek boek over de mysterieuze
ziekte ME/CVS

  []

-----

29 april 2013

The 'New' Wessely-School,
Same as the Old

M.E. patients and their carers might feel there is
reason to be hopeful following the announcement
of "the new UK CFS/ME Research Collaborative", by
the Science Media Centre.

Their hopes might take a knock when they read:

      "Chronic Fatigue Syndrome (CFS; also known
      as ME) is an incredibly controversial field, not
      just in terms of public perception, diagnosis
      and treatment but even for the very
      researchers trying to help, who have
      experienced campaigns of harassment from
      some patients."

And they might feel a bit deflated when they read:

      "The disease affects over 600,000 people in
      the UK with a quarter of those cases unable
      to perform even basic activities or look after
      themselves"

Because it is apparent that the 'new collaborative' is
bent on studying anyone who is tired, which
contributes absolutely nothing to people with M.E.
other than to further obscure their illness and
compound the abuse they are routinely subjected
to ( http://bit.ly/17tiawR).

They might deflate further when they realise that Dr
Ester (we're gonna 'lightning process' your kids
brains by a practitioner with no medical licence)
Crawley is one of the new collaborative.

Their hopes might take a final fatal blow when they
come across:

      "Predisposing factors include female sex,
      functional somatic syndromes, and prior
      mood disorders. For treatment purposes,
      important maintaining factors include
      comorbid mood disorders, beliefs about
      causation, and either pervasive inactivity or
      swinging from inactivity to over-activity
      (boom and bust pattern of behaviour)",

Because most of this is pure
wessely-school hype. 

(http://goo.gl/6BkBt )

I imagine that it is possible, that Professor Sir Simon
Wessely exploited his position as the resident
Science Media Centre 'expert' to influence what
was written in the press-release; but I have yet to
see anyone from the new collaborative
contradicting or dissociating themselves from these
unscientific and degrading opinions.

For myself, I will carry on hoping for real M.E.
research done by researchers that prefer scientific
evidence to opinions and prefer independence to
pandering to some old-school bullies whose ideas
are already discredited by their own efforts.
 

Peter Kemp

-----

27 april 2013

New research body to
look at chronic fatigue
syndrome

ttp://bit.ly/Y3yH80

-----

25 april 2013

Dr. Cheney's recent CFS Lecture on video

http://cfspatientadvocate.blogspot.com/2013/04/paul-cheney-lecture-march-22-2013.html

-----

23 april 2013

Biological breakthrough offers
fresh hope for ME sufferers

http://thetim.es/12Giw27

-----

23 april 2013

Could mitochondrial dysfunction be a
differentiating marker between Chronic
Fatigue Syndrome and Fibromyalgia?

http://1.usa.gov/14MocLt
 

-----
 

22 april 2013

News from The University

Press releases

Patients with chronic fatigue use
additional areas of brain when
using memory

Press release issued 22 April 2013

Findings mark launch of UK research
consortium to advance studies into
chronic fatigue and ME

Scientists studying the brain scans of chronic
fatigue patients have found they use additional
brain regions to do simple tasks requiring attention.
This may explain the problems many sufferers have
with memory.

The findings are just one of several new studies
being presented today [22 Apr] at the launch of a
new UK-wide research body to advance
understanding and treatment into this debilitating
condition which affects over 600,000 people in the
UK.

The UK CFS/ME Research Collaborative [UK CMRC] is
a new initiative led by the country’s leading experts
in the field to expand medical studies into this
complex set of disorders by facilitating greater
expertise and improved co-ordination of research
activities.

Researchers at the launch will be discussing some of
the key issues they are facing and the areas that
are making progress.

They will also be explaining some of their thoughts
for future research and their latest preliminary
findings.

These include, why some patients experience
significant pain that is unresponsive to pain killers;
whether using a monoclonal antibody (Rituximab),
which is highly successful in treating rheumatoid
arthritis, some cancers and the profound fatigue
experienced in patients with an immune liver
disease known as primary biliary cirrhosis, could be
used as a test experimental medicine approach in
order to understand more about fatigue
mechanisms; and the link between blood pressure
problems and CFS patients.

Professor Stephen Holgate ( http://bit.ly/10tWykI),
Chair of the UK CMRC and MRC Professor of
Immunopharmacology at the University of
Southampton, said:

“For the first time the research community and
funder in the UK have joined forces in this unique
new collaboration to create a step change in the
amount and quality of research into chronic fatigue
and ME.

By coming together in this way, the application of
state-of-the-art research methodology to this
complex group of conditions will greatly increase
the chance of identifying pathways linked to
disease causation and novel therapeutic targets.
The key to success will be the engagement of
scientists outside the field.”

Dr Esther Crawley, Reader in Child Health in the
School of Social and Community Medicine at the
University of Bristol, added:

“CFS or ME can leave many people either
housebound or confined to their bed for months or
years, causing their lives to change drastically and
continued employment to become impossible.

We need to join forces with charities and funders to
ensure we can best address the needs of patients
suffering from this often life-changing condition
which affects one to two per cent of adults and
teenagers in Britain.”

Representatives from patient charities that support
chronic fatigue and ME research will also be
attending the event.

These include Action for M.E, the Association of
Young People with ME [AYME], the Chronic Fatigue
Syndrome Research Foundation, The ME
Association and ME Research UK will be present at
the event, as will some of the UK’s major research
funders such as the Medical Research Council
[MRC], the National Institute for Health Research
[NIHR] and the Wellcome Trust.

````
Further information:

Launch of UK CMRC

The launch of the UK CFS/ME Research
Collaborative is being held on 22 April 2013 from 12
noon to 4.45 pm at the Wellcome Collection, 183
Euston Rd, London, NW1 2BE.

About Chronic Fatigue Syndrome (CFS)

Chronic fatigue syndrome (CFS) is a medially
unexplained, disabling condition, characterised by
post-exertional fatigue and malaise, accompanied
by other symptoms, such as muscle pain, insomnia,
and poor concentration.

Some believe that myalgic encephalomyelitis (ME) is
a related condition, whereas others believe it is
different. The clinical descriptions are similar, and
studies show a large overlap.

Whatever it is called, there is reasonable evidence
that the condition is heterogeneous, with chronic
physical and mental fatigue and fatigability as the
common factors.

Most studies find that there are between three and
five sub-groups that differ from each other. Since
it is hard to define properly, it is equally difficult to
be certain about how common it is.

Most studies suggest that between 0.5 to 2.5 per
cent of the population suffer from the illness,
depending on how it is defined.

It is more common in females, and the peak age of
onset is 35-45, although it may occur in both
children and adolescents and the elderly. It is more
common in ethnic minorities in the UK.

No certain cause has been established, which
perhaps reflects its heterogeneous nature, but
established immediate causes include certain
infections, such as Epstein-Barr virus (EBV). (10-13
per cent of patients with a primary EBV infection
develop CFS six months after onset.

Predisposing factors include female sex, functional
somatic syndromes, and prior mood disorders.

For treatment purposes, important maintaining
factors include comorbid mood disorders, beliefs
about causation, and either pervasive inactivity or
swinging from inactivity to over-activity (boom and
bust pattern of behaviour).
 

-----
 

12 april 20123
Detection of Mycotoxins in

Patients with Chronic Fatigue
Syndrome

http://bit.ly/121ZBhJ

 

-----

 

11 april 2013

Prefrontal lactate predicts
exercise-induced cognitive
dysfunction in Gulf War Illness.

http://1.usa.gov/17sKMYb

 

-----

 

11 april 2013

Daily cytokine fluctuations, driven by
leptin, are associated with fatigue
severity in chronic fatigue syndrome:
evidence of inflammatory pathology.

http://1.usa.gov/10PoITG

 

-----

 

31 maart 2013

Chronic Fatigue Syndrome: Hidden in Plain Sight
*....The immediate needs are to comfort the sick, educate the doctors and shame the government...*
By Llewellyn King

http://bit.ly/14GkXUX

 

-----

 

21 maart 2013

Acetaminophen in ME/CFS, FM & RA

https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1303c&L=co-cure&F=&S=&P=35645

 

-----

 

21 maart 2013

Does Acetaminophen Activate
Endogenous Pain Inhibition in Chronic
Fatigue Syndrome/Fibromyalgia
and Rheumatoid Arthritis?

A Double-Blind  Randomized Controlled
Cross-over Trial.

http://1.usa.gov/10nEBBe

 

-----
 

20 maart 2013

PACE Trial 

"Changes to the recovery criteria
have not improved their validity"

Rejected Letter (FWIW...!)

````

My letter (below) in reply to the PACE Trial
recovery paper was not accepted.

They said *an earlier letter made the same
points*.

I'm happy if this is true, but will wait to see
how true this is in terms of the details I gave.

Tom @TomKindlon

````

(Possible Title:)

Changes to the recovery criteria
have not improved their validity*

When one publishes a protocol for a trial, as the
PACE Trial investigators have done (White et al.
2007), there needs to be compelling reasons to
deviate from it (Evans, 2007).

White et al. (2013) claim that the revised recovery
definition is conservative, with the changes being
made to "more accurately reflect recovery".

Is this true with regard to the Chalder Fatigue
Questionnaire (CFQ) and SF-36 physical functioning
(SF36 PF) criteria?

The new CFQ criterion, a score of 18 or less (Likert
scoring), was chosen because it represented the
mean plus 1 standard deviation in a community
sample (Cella & Chalder, 2010).

The CFQ scores were not normally distributed but
we know that only 13.6% of the sample scored
higher than 18.

However, it does not follow that this threshold
represents a reliable cut-off for fatigue-caseness
as fatigue problems are common in the general
population.

For example, in the paper the authors referenced
when discussing symptoms in the general
population (McAteer et al. 2011), 41.3% reported
“feeling tired/run down” while 23.1% of a
representative sample of the Norwegian population
had high levels of fatigue (Lerdal et al. 2005).

That is to say, it is quite possible that more than
13.6% of the sample in Cella & Chalder (2010) were
experiencing significant fatigue problems.

The recovery criteria described in the protocol
require a score of 3 or less (bimodal scoring) which
is a validated definition for the absence of fatigue
(Chalder et al. 1993).

Although exact translation between Likert and
bimodal scores is not possible, it can be shown that
such a score is stricter than the new criteria
because it translates to a Likert score between 6
and 17.

Therefore, when compared against the established
definition of fatigue-caseness, a Likert score of 18
always indicates the presence of abnormal levels of
fatigue.

Furthermore, the trial's entry criterion for fatigue, a
CFQ bimodal score of 6 or higher, translates to a
Likert score between 12 and 23 meaning that
participants could have baseline scores which were
already 18 or less so that no improvement was
required for them to recover according to the new
criteria.

Indeed, 17.6% of patients diagnosed with CFS at
the Chronic Fatigue Unit at the South London and
Maudsley NHS Trust had scores of 18 or less on the
CFQ before treatment for their fatigue.

For SF-36 PF scores, the protocol required a score
of [] 85 for recovery, whilst the newer criteria
require a score of [] 60.

      Again, participants could score 60 or more at
      baseline which suggests the new criterion is
      neither conservative nor "more accurately
      reflects recovery".

Also, while I have not undertaken an exhaustive
search, in all the other trials that I am aware of
that used the SF36 PF to operationalize CFS
criteria, a score of 60 would have been sufficiently
low to meet each trial's requirements for a
diagnosis of CFS.

(e.g. Stulemeijer et al. 2005; Tummers et al. 2012;
van't Leven et al. 2010; Wearden et al. 2010).

White et al. (2013) used the formula of mean minus
one standard deviation (sd) from data on the UK
general population from Bowling et al. (1999) to
derive the threshold of SF-36 PF [] 60.

However, CFS is not unique in causing reductions in
this domain, with Bowling et al. noting that 22% in
the same survey reported a long-term health
problem while 16% reported having an acute illness.

Moreover 28.6% were aged 65 or more; population
norms from these age groups are of questionable
relevance to the PACE Trial cohort (mean (sd) age
at baseline: 38 (12)).

     In summary, the CFQ and SF-36 PF criteria
      that constitute White and colleagues' new
      definition of recovery have been revised such
      that they are less strict than those
      contained in the published protocol.

      These changes suggest that it is not safe to
      conclude that the new criteria are either
      conservative or more accurately reflect
      recovery than those published in the trial's
      protocol.

Tom Kindlon

Information Officer (voluntary position),
Irish ME/CFS Association,
PO Box 3075, Dublin 2, Ireland.

Declaration of Interest I do various types of
voluntary work for the Irish ME/CFS Association.

 

 

-----

19 maart 2013

Heart rate variability during sleep and
subsequent sleepiness in patients with
chronic fatigue syndrome.

http://1.usa.gov/XnzFsd

-----

 

17 maart 2013

Screening NK-, B- and T-cell
phenotype and function in
patients suffering from Chronic
Fatigue Syndrome

http://1.usa.gov/16NtW5Y
 

-----

 

16 maart 2013

ME research budget

http://translate.google.com/translate?hl=en&sl=no&u=http://dusken.no/articles/details/23332/me-forskning-pa-lavbudsjett/&prev=/search%3Fq%3Dhttp://dusken.no/articles/details/23332/me-forskning-pa-lavbudsjett/%26hl%3Den%26safe%3Doff&sa=X&ei=PkdDUc3hNOmP2gXjlIGIAw&ved=0CDUQ7gEwAA

 

-----

14 maart 2013

Altered functional B cell subset populations in patients with chronic fatigue syndrome compared to healthy controls.

http://1.usa.gov/WpmY2J

 

----
 

11 maart 2013

NIH awards nearly $2 million
to 3 NYC institutions for chronic 
fatigue syndrome research

http://bit.ly/XuuxpA

 

-----

 

1 maart 2013

The GI microbiome and its role 
in Chronic Fatigue Syndrome: 
A summary of bacteriotherapy

Abstract: http://search.informit.com.au/documentSummary;dn=119626231492520;res=IELHEA

 

-----

1 maart 2013

Hillary Johnson's “Chasing the Shadow”

http://bit.ly/Wr8Qsf

-----

26 februari 2013

Evaluating the DePaul Symptom

Questionnaire in the ME Research
UK cohort: extension study

http://bit.ly/XM0YeF

-----

 

18 februari 2013

ME-CFS, Ampligen, FDA & Hunger Strike
A Drug Goes Down in a Perfect Storm  

http://bit.ly/134phb6


-
----
 

9 februari 2013

Permanent link to full PACE Trial Protocol and Comments on Recovery Threshold

Please see: http://bit.ly/WWoVR3 

-----

7 February 2013

Below you will find an excellent introduction by the Countess of Mar about ME and the fraudulent PACE trial to the debate about this subject in the  House of Lords (UK).

The full transscript can be found at: http://bit.ly/WzPygn 

The gripping video recording of the debate can be found at: http://bit.ly/WzPygn

 

-----

1 February 2013

Dr. De Meirleir lecture at WPI -- summary

Please see:  http://bit.ly/VzHhfJ

-----

8 January 2013                            

The final report from the National Institute of Health (NIH) State of the Knowledge Workshop on ME/CFS is available on their website. 

Please see:  http://1.usa.gov/VID8n2
 

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