Monday, April 11, 2016

My Pen Pals at the NIH

A few weeks ago I wrote a letter to the NIH ME/CFS Trans-NIH Working Group, stressing the fact that Dr. Walitt was not qualified to be Lead Clinical Investigator of the NIH study, or, for that matter, to be involved in the study in any capacity. 

The Trans-NIH Working Group PR department has finally written me back.

It was a letter filled with reassurances designed to quell rather than to inform. I have no doubt that the person who wrote it hasn't the faintest idea what the study is about, or who Dr. Walitt is.

NIH has said that it is open to input from patients. But if their policy is to respond to our concerns with stock replies from their PR staff, what does that say about the value they place on our input? It is a hollow gesture to offer an open door, only to have it lead to an empty room.

This was my reply to the letter I received from NIH (scroll down to the end of this post to read it):

__________________________

April 11, 2016

Dear Public Liaison staff,

Thank you for your response to my letter concerning bias among investigators involved in the NIH study on ME/CFS. You have crafted a reassuring response without actually addressing my point.

My point is not that there is potential bias, but that your lead clinical investigator Dr. Brian Walitt is, in fact, biased. His bias has been expressed in a number of publications, as well as in an interview last September. Dr. Walitt believes that patients with fibromyalgia and related illnesses, such as ME/CFS, "catastrophize," that they exaggerate their symptoms, and that their disease has psychogenic origins, specifically in child abuse.

Psychogenic theories are a remnant of Freudian psychology, in which various disease states, including MS and gall bladder disease, among others, were attributed to childhood abuse. There is no scientific evidence to support these theories, nor will there ever be. Science demands the rigor of controlled studies, and a limitation of confounding variables. It also demands baseline measurements. The psychogenic claims espoused by Dr. Walitt have not conformed to these basic tenets of science. Instead they have merely echoed an increasingly outmoded style of thinking. His inclusion in this study is not only unfathomable, it is an embarrassment.

If this were a study on the biological origins of Alzheimer's disease, ALS, or Parkinson's, would you place someone in a position of authority who believed that these diseases were caused by childhood abuse, or that the patients were "catastrophizing" or exaggerating their symptoms? It would be absurd to include someone with such views, and equally absurd to claim that someone holding those views would not affect the study.

Dr. Walitt has no place in this study. Neither does Dr. Gill, who holds similar views, nor Dr. Saligan who has jointly published papers with Dr. Walitt espousing psychosomatic theories. If Dr. Collins is serious about studying this disease, as he has so often stated, he should show his commitment by appointing people to positions of authority who are actual experts.

Sincerely,

Erica Verrillo

______________________
 

Dear Ms. Verrillo:

Your email to the National Institutes of Health (NIH) ME/CFS Trans-NIH Working Group concerning myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been forwarded to this Institute for reply. 

We are pleased that you were able to join us for the NIH telebriefing on ME/CFS last month.  You expressed concern about potential bias among the investigators who will be involved with the new ME/CFS study at the NIH Clinical Center in Bethesda, Maryland.  Please know that the investigators have a keen interest in finding answers and life-changing treatments for people with ME/CFS.  The study protocol is designed to prevent any possible bias from affecting the results, and the large group of associate investigators, combined with the collaboration and oversight of the Executive Committee, should also help to ensure this.  We have utmost confidence in the dedicated, multidisciplinary team that will conduct this study, and we sincerely believe that the combined resources and expertise of the NIH will shed light on a previously unsolved medical puzzle. 

If you have not already done so, you may wish to visit the Trans-NIH ME/CFS Working Group website at http://www.nih.gov/mecfs/about-mecfs.  This site will serve to keep people informed about the Working Group’s activities. The site includes FAQs about trans-NIH research on ME/CFS, reports from past ME/CFS workshops and meetings, and links to resources on ME/CFS for researchers and patients.

Thank you for your comments.  We at the NIH are confident that the new clinical study and other initiatives will support the efforts of the scientific experts who are working on this very challenging disorder and will encourage rapid scientific progress and the development of new ways to diagnose and treat ME/CFS.

We hope this information is helpful.

Office of Communications and Public Liaison,
National Institute of Neurological Disorders and Stroke
on behalf of the Trans-NIH ME/CFS Working Group

5 comments:

  1. Gee willikers, I hope a certain self-appointed white knight doesn't end up catastrophizing the fact that Ms. Verrillo had the audacity to voice an opinion with the NIH.

    ReplyDelete
  2. Dispiriting, but at this point, not surprising. Thank you for continuing your correspondence with NIH and letting us know the outcome. My petition at #MEAction asking that these three be removed from the "expert committee" - and in particular, Dr. Walitt not serve as "Lead Associate Investigator" - should be delivered shortly. We will see if we get a response.

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  3. This is timely for me. I sent the below email to Dr. Walitt today. I have received no response.

    In a message dated 4/11/2016 9:44:42 A.M. Pacific Daylight Time, SNK1955@aol.com writes:

    Dear Dr. Walitt,

    My name is Sharon Kramer. I am doing research on a particular DHHS/CDC grant to the American College of Medical Toxicology (ACMT). They are federally funded to disseminate information to U.S. physicians via the Association of Occupational and Environmental Clinics (AOEC).

    Part of my research has taken me into the realm of the NIH and the new study of ME/CFS. I am aware that you were designated to be involved in this NIH study. I am aware that there have been several within the ME community who have objected to your involvement due to of your prior research and statements regarding ME being a somatization disorder.

    From the NIH website, it appears that you have recently changed departments within the NIH. Does this mean that you will no longer be involved in the NIH ME/CFS study?

    Thank you,
    Sharon Kramer

    ReplyDelete
    Replies
    1. "MR Walitt!!!? I didn't spend ten years in evil medical school..."

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  4. This comment has been removed by the author.

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