Myra McClure and NIH's SEP

[Note: Dr. McClure has withdrawn from the CFS SEP since the publication of this post - and many others.]

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 Mrya 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". **

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." **

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 Trudy 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.

** "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. [Actually published in 2011, but changing the date was the only way to push it further down in the archives.]