Society Logo
ME/CFS Australia Ltd
Please click here to donate ME/CFS Australia (SA) Inc
 
 
Facebook
 
ME/CFS AUSTRALIA (SA) INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:
PO Box 322,
Modbury North,
South Australia 5092

Office:
Suite 506,
North Terrace House,
19 North Terrace,
Hackney, SA, 5069


Phone:
1300 128 339

Office Hours:
Wednesdays, 11am-3pm

ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

Disclaimer

ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.

Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.

Become a Member
PDF Application Form (PDF, 242KB)
Why become a member?
 

Myra McClure and NIH's SEP

Friday 11 February 2011

Slightly AliveFrom Mary Schweitzer's Slightly Alive blog:

 

Myra McClure and NIH's SEP

Saturday 5 February 2011

In what can only be seen as a most unfortunate move, the NIH has added Dr. Myra McClure of the UK to the CFS SEP (Special Emphasis Panel) requested by Congress to evaluate proposals for grant money from NIH concerning CFS.

Thanks to the work of patient advocate Pat Fero, we have profiles of the members of this SEP - few of whom even claim expertise on CFS. These are mainly people who study pain, and more than one who studies psychological factors affecting the sensation of pain.

Then there is Jim Jones at CDC. Jones started out working with a cluster outbreak in the Denver area, writing a companion article to Straus's at the end of 1984 suggesting CEBV (chronic Epstein-Barr Virus) was the culprit. When Straus dropped CEBV and renamed it CFS, Jones quickly adopted a model of somaticizing. It was particularly cruel because he worked with a lot of children and adolescents. He has a kind of a CBT/GET/SSRI model at CDC, where he was hired to conduct physician education a few years ago. I suspect he is the driving force behind that "new and improved" web site that praises the UK's NICE Guidelines [which attribute The Disease to "inappropriate illness beliefs" and recommend 10 weeks of CBT (Cognitive Behavior Therapy) plus 10 weeks of GET (Graded Exercise Therapy), known colloquially as CBT/GET, as a cure].

Now we come to Myra McClure - co-author on a British study in PLoS One published just three months after the WPI/NCI/Cleveland Clinic study came out in "Science". 1

Someone must have said they needed a retroviral expert on the panel. Who better than someone who couldn't find a gamma retrovirus if they slapped her face with a cat suffering from feline leukemia? As an observer commented at the time, did she take the lens cap off the camera?

Worse (in my opinion) for a person charged with evaluating grant proposals for CFS, McClure found nothing in any way peculiar about deriving her entire data set from patients in a purely psychiatric practice - Simon Wessely's and Anthony Cleare's at KCL (King's College, London). Wessely once told me that because I had been diagnosed with Hashimoto's and NMH, I would have been sent to a different clinic at KCL and he would never have seen me. So the patients chosen by McClure had NOTHING that could be diagnosed using biomedical markers.

If you harbor any doubts, this is taken from the abstract of the McClure's article failing to find XMRV. How did they define their patient cohort?

"Patients in our CFS cohort had undergone medical screening to exclude detectable organic illness and met the CDC criteria for CFS." 1

One might question what they mean by the "CDC criteria." If you start out with a group of patients who are mainly depressed (as Michael Sharpe enthusiastically described the cohort defined by the Oxford definition in answer to a question at the 1998 AACFS conference - he agreed to my suggestion that up to 90% of his patients mainly had minor depression ...) you can squeeze through the Fukuda (1994) definition - fatigue, sleep problems, difficulty concentrating, headaches, muscle aches ... The critical point being that anyone with an organic explanation for any of this would already have been excluded from the group.

It is a stretch to claim they meet Fukuda, but they would easily have met Reeves' definition (the questionnaires). Lenny Jason found that the Reeves adjustment to Fukuda (those questionnaires) fail to diagnose the sickest 30% who would previously have met Fukuda, and then fold in a lot of patients with primary depression or anxiety .... So a data set consisting of patients from a psychiatric clinic could easily meet the Reeves criteria.

And, what a coincidence, Reeves referenced Simon Wessely and Trudie Chalder (British expert on "factitious illnesses" and "factitious illness by proxy") in the article that described his questionnaires, and Reeves sudden announcement in 2006 that 4-7 million people in the U.S. have CFS, is exactly what you would have gotten at the time using the Oxford definition (Wessely's).

If you want to see a website that will make your hair stand on end, take a gander at the KCL website on CFS (and you thought CDC's website was bad ...) - the emphasis is on getting rid of "enablers," such as doctors who do not spout Wesselyite dogma, helpful friends and neighbors, and wheelchairs:

http://www.kcl.ac.uk/projects/cfs/health/

Or you could skip to my two favorite sections, on "fear" and "letting go of support":

http://www.kcl.ac.uk/projects/cfs/health/#Fear

These were the folks who provided patients for McClure's study of XMRV.

So they not only have added an "XMRV expert" who can't find XMRV ... But also someone who thought the KCL depiction of "CFS/ME" was accurate.

Slap in the face - but really more of a slap in the face to Lo and Alter and NIH's Natl. Cancer Institute (the latter had co-authors on the "Science" study) than WPI. Their own institution kicked them down the stairs.

1 "Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome"
Otto Erlwein, Steve Kaye, Myra O. McClure, Jonathan Weber, Gillian Wills, David Collier, Simon Wessely, and Anthony Cleare
PLoS One. 2010; 5(1): e8519. Published online 2010 January 6. doi: 10.1371/journal.pone.0008519.
PMCID: PMC2795199
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2795199/

Mary Schweitzer, Ph.D.

 

The above originally appeared here.

 

Update: Friday 11 February 2011

Justin Reilly has posted the following on Cort Johnson's Phoenix Rising blog:

 

Easy Advocacy for ME

Myra McClure off the SEP! Yea Us! Now let's get some actual scientists on it!

by justinreilly on February 7th, 2011 at 03:25 AM

Myra McClure said in an email to PR member Marty that she has stepped down from the "CFS" SEP! We did it!

Now lets get the dentists and psychologists (except for Friedberg) replaced with virologists, retrovirologists, neurologists and immunologists, so send out this email. OK, OK, I'll let you celebrate and rest for a couple of days, but then come on back and do this two-minute advocacy. Again: Yea Us!

How to do this extra-easy advocacy:

1. Copy the following subject line and paste it into the subject field in your email.

Subject Line:

Federal Law Requires More Changes be Made to NIH's "CFS" SEP Now!

2. Copy the following text (the letter) into your main field of your email:

Email text:

I am writing in response to the latest malfeasance by NIH in response to the epidemic of the severe neuro-immune disease ME (aka "CFS").

I strongly object to the makeup of the new "CFS" Special Emphasis Panel (ZRG1 CFSH80) grant review committee at NIH. I am happy to hear that Myra McClure is no longer on the panel. Notwithstanding this improvement, additional changes must be made to conform the SEP with federal law.

The many psychologists and dentists on the panel are not sufficiently qualified in virology or molecular biology (or ME ("CFS") research in general) to be evaluating grant proposals on ME. Prof. Fred Friedberg is a psychologist, but his membership on the panel is appropriate since he has ME and has published a good amount of original research on it.

Federal Law requires that SEPs be made up of people who have expertise in the field for which they are reviewing grant applications. NIH has substantially and continually violated this law for almost all of the quarter-century during which it has reviewed ME grant applications. The last panel was much better. The existing science shows that the most appropriate fields of expertise in ME are: virology, retrovirology, neurology, cardiology, endocrinology, pain medicine and immunology.

To my informed understanding, ME experts (including researchers, clinicians and patients) want to see the following ME authorities serve on the "CFS" SEP:

Leonard Jason, Ila Singh, Anthony Komaroff, Daniel Peterson, Paul Cheney, Frank Ruscetti, Sandra Ruscetti, David Bell, Susan Levine, Joseph Burrascano, Eric Klein, Judy Mikovits, Robert Silverman, Charles Lapp, Peter Rowe, Martin Lerner, David Streeten, Dharam Ablashi, Harvey Alter, Shyh-Ching Lo, David Strayer, Paul Levine, Robert Suhadolnik, Fred Friedberg, Donnica Moore, Lucinda Bateman, Sam Chow, Alan Light, Kathleen Light, Martin Pall, Rich van Konynenburg.

ME experts (including researchers, clinicians and patients) do not want to see the following inappropriate people serve on the "CFS" SEP:

Deirdre Buchwald, John Coffin, Suzanne Vernon, Alan Dove, Brigitte Huber, Jonathan Stoye, Peter Manu, Edward Shorter, Christine Heim, any psychiatrists/psychologists from England or Germany, any “scientists” from the CDC or Emory University.

TMJ Disorder has been added as a subject of the "CFS" SEP. This is inappropriate since these are not very related disorders and call upon different specialties for study.

As you know, the related quarter-century long problem is an insultingly low amount of NIH funding for ME research which was $0 per year for several years and has been $3M - $5M in the last few years. Obviously, ME demands funding commensurate to the aggregate illness burden it places upon the nation, which is greater than that of HIV/AIDS. HIV/AIDS receives an appropriate $3B in NIH funding (down from $15B years ago). ME should thus receive $3B in NIH funding for valid biomedical science.

Therefore, I DEMAND:

(1) that the committee remove the psychologists who do not have expertise in ME ('CFS'), and the dentists from the panel. Prof. Friedberg should not be removed since he has a great amount of experience with ME. They should be replaced by qualified biomedical researchers who have significant experience with ME ('CFS'); and

(2) that the TMJ SEP be separated from the "CFS" SEP.

(3) that ME science receive a 1000 times (not percent) increase in NIH funding to an appropriate level of $3 Billion per annum.

Please reply with what you are doing to bring the "CFS" SEP into compliance with federal law.

Thank you!

Sincerely,

3. Sign the letter at the bottom.

4. Send the letter to the following addresses:

Extra Credit:

Go to these contact pages for your members of congress and president and send the email to them:

Congratulations and Thank You! You just saved ME patients from future suffering!

 

The above, with comments, originally appeared here.

 

Update

 

 


 

blog comments powered by Disqus
Previous Previous Page