Friday, January 2, 2009

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 McClure has withdrawn from the CFS SEP since the publication of this post - and many others.]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

16 comments:

  1. Thank you Mary. Well said. Now will send more e-mails

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  2. mcClure has a unique approach to science

    boring conventional scientists replicate research and then change one variable at a time so that cause and effect can be established
    McClure on the other hand has a far more adventurous approach.When trying to reproduce results she doesnt replicate and changes all the variables so we can have fun trying to guess why she could not find the virus. She then adds the touch of a true comedienne by saying ."If it was there I am sure we would have found it". Comedy like this is rare in todays world.She is clearly the best retrovirologist in showbusiness

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  3. Thanks, Mary, for being such a tireless advocate for those who can not.

    Your analysis of the psych school's gerrymandering of cohort definition is fascinating if repugnant. My knowledge of the UK psychiatrists is limited -- have they ever just flat out pushed to have CFS fall under the umbrella of fictitious disorders? How do they account for patients who have no primary psychiatric disorder?

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  4. It is wonderful to read such a sane, cogent, articulate, historically factual account of the madness we are living.

    Thank you!

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  5. GOOD JOB Mary...what a maze, hey? I think the new CFS SEP Scientific Review Officer is probably feeling assaulted and defensive or is feeling sick. You know, since Dr. Hoffeld left, we have had several SRO's. Hoshaw may leave too. Maybe it's like tater duty, you think?

    Problems will continue until policy at NIH changes and this CRUD illness is out of this review section. They can operate fine without us, despite the name CFS SEP... THE OTHER THING IS THAT ANY SCIENTIST CAN ASK FOR A DIFFERENT REVIEW GROUP.

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  6. During his Royal Society of Medicine “CFS” Conference presentation, in April 2008, Prof White had told the conference:

    …So ICD-10 is not helpful and I would not suggest, as clinicians, you use ICD-10 criteria. They really need sorting out; and they will be in due course, God willing.

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  7. Thanks, Mary...sane information as usual.

    Hey, Pat...maybe he's feeling as sick and as ostracized as we are...isn't that nice?

    You and Mary are two of our rocks! Foundational.

    Do you think the SoK will change anything?

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  8. What on earth is a retrovirologist from the UK doing sitting on a panel in the US that will be involved in grants in the USA?

    That question alone boggles the mind, let alone this woman's publicly stated dismissal of XMRV. I believe she said last year she would have nothing more to do with it.

    Hey Myra, we liked your first idea. Stay home! We don't want you!

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  9. Thanks Mary for this wonderful piece, as usual. As an immigrant from Europe into the United States and who had to jump(my husband, not me :-)) through many hoops for years to get a work permit and a residence permit I am amazed and outraged that someone obviously from abroad with no expertise at all takes place in a committee of a country she isn't even a resident in. What on earth is the meaning of this? Does it mean the USA hasn't any reseachers who can fit the profile? Why doesn't McClure just stay in the UK where she is a resident and continue her crusade from there? I find it more than strange that the NIH apparently thinks they need foreigners(does she have a work permit?) in their committee and skip the law that states that places/jobs need to be filled with residents/citizens first before inviting foreigners to apply. I wonder how this is going to pan out, is she going to jet from the UK to the USA every time there is a meeting or is she a full time board member. If she is going to live here she was probably able to skip the 2-3 year waiting period for a visa. Very strange and I wonder if it's all legal.

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  10. Repugnant is the word. Maybe I do need psychiatric help as I can't face the reality of those links you provide.

    Having woken to face another day of illness, I can't take on that burden of hatred from people charged to help us.

    One good note, every time those people send a hand grenade over the lines I whip out my credit card and donate what I can to WPI.

    Salvation!

    Helen

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  11. @Robin:
    I think this link might answer your question:

    http://www.meactionuk.org.uk/DSM-V-submission.htm

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  12. Thanks Mary - very disappointing change from the last panel. You can find the list and their past research here:

    http://forums.aboutmecfs.org/content.php?356-CFS-NIH-Grant-Panel-%28SEP%29-Feb-2010

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  13. Guess What? Myra says she's withdrawn !

    Here is an email exchange with Marty:

    I sent the following email to Myra McClure today:

    "Please withdraw from the U.S. Government's SEP (Special Emphasis Panel) for ME/CFS.

    I have lost 35 years of my adult life to this disease. We have to demand researchers who recognize the disease, and we have made this clear to the other members of this panel."

    Her reply:

    "I already have."

    Katrina

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  14. My goodness, she has withdrawn already? It's probably wise of her.

    I didn't see who made these appointments .. Hoshaw?. Couldn't they find more ME/CFS docs and retrovirologists?

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  15. Aloha Mary,

    A friend passed your site on to me. I am glad I found you, and the others here. I am sure the numbers of ME sufferers are higher than estimated. I am an RN in Hawai'i. For the last 4 yrs, I have been mainly bedridden. The exhaustion and pain inexplicable. All I have is my husband, my faith, and a few friends who keep in touch online, knowing I cannot tolerate visitors. Love and aloha to you all out there! PS I pretty much gave up 2 years ago realizing there is no cure, only rest, rest, and more rest, hoping for those few moments when I feel I can get up for a little while :) I continue in online education to keep up on latest nursing.

    With hugs,
    Rosy Newlun

    ReplyDelete
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