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IOM Panelists: TL; DR

December 18th, 2013

I realize that the past two weeks have been a veritable blog-alanche here at Occupy CFS. There’s been more research and writing here on the IOM ME/CFS panel than any other place online of which I am aware. I know that it’s very hard to get through so much material, and several people have requested the Too Long, Didn’t Read version of all the posts in a single list. I’m happy to oblige!

  • The IOM panel was announced on December 3, 2013. (see official roster)
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  • I worked with nine other advocates to research each panelist. (see our methods)
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  • We all had different views of how/whether to participate in the IOM process, but we set our differences aside to collaborate on this project.
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  • We found no conflicts of interest, as strictly defined in the IOM’s policies.
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  • We had a difference of opinion on whether things like NIH funding or other interests constituted a conflict of interest. (see our summary on COI and overall balance)
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  • We agreed that there are not enough ME/CFS experts on the panel.
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  • We do not categorically reject the presence of any psychologist/psychiatrist on the panel. After all, we all want Dr. Leonard Jason on the panel and he is a psychologist.
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  • Dr. Ellen Wright Clayton, chair of the panel, has a JD/MD and specializes in ethics of genetic screening and research. (see our writeup of the “unknown” panelists)
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  • Dr. Margarita Alegria is a psychologist specializing in mental health research in multicultural populations. We have serious concerns that she may believe ME/CFS is a psychological condition. (see our writeup on her bias)
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  • Dr. Lucinda Bateman is an ME/CFS expert clinician-researcher, with a large ME/CFS clinic. (see our writeup on the “known” panelists)
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  • Dr. Lily Chu is a clinician-researcher whose career has been hijacked by ME/CFS.
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  • Dr. Charles Cleeland is a psychologist specializing in cancer pain and qualitative measures.
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  • Dr. Ronald Davis is a renowned geneticist, and has a close family member with ME/CFS.
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  • Dr. Betty Diamond is a rheumatologist specializing in lupus.
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  • Dr. Theodore Ganiats has expertise in family medicine and healthcare outcomes. We have serious concerns about his close ties to the AAFP and a colleague who has said that ME/CFS is a psychological condition. (see our writeup on his bias)
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  • Dr. Betsy Keller is an exercise physiologist studying ME/CFS.
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  • Dr. Nancy Klimas is an ME/CFS expert clinician-researcher, with expertise in immunology and a large clinical practice.
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  • Dr. Martin Lerner is an ME/CFS expert clinician-researcher, specializing in infectious disease. He is also a recovered ME/CFS patient.
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  • Dr. Cynthia Mulrow is an expert on systematic reviews. We have serious concerns about her bias based on two CFS publications in 2001. (see our writeup of her bias)
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  • Dr. Benjamin Natelson is an ME/CFS expert clinician-researcher and neurologist.
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  • Dr. Peter Rowe is an ME/CFS expert clinician-research, with one of the largest pediatric ME/CFS practices in the country.
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  • Dr. Michael Shelanski is a cell biologist specializing in Alzheimer’s disease. We are puzzled about his presence on the panel.
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  • You have until December 23rd to submit feedback to IOM about the panel. (see how to do that here)

 

Once again, I have to acknowledge the group effort that made this series of blog posts possible: Lori Chapo-Kroger, Claudia Goodell, Chris Heppner, Denise Lopez-Majano, Mike Munoz, Darlene Prestwich, Tamara Staples, WillowJ, and one advocate who wished to remain anonymous. My sincere thanks to them all.

 

  1. Emma
    December 18th, 2013 at 18:08 | #1

    What an excellent post. Many thanks!

  2. Gabby Klein
    December 18th, 2013 at 20:16 | #2

    Thank you for doing this, Jennie.

  3. Ren
    December 19th, 2013 at 07:37 | #3

    Very helpful. Thank you, again. Thank you, all!

  4. Anushka
    December 19th, 2013 at 09:50 | #4

    “We do not categorically reject the presence of any psychologist/psychiatrist on the panel. After all, we all want Dr. Leonard Jason on the panel and he is a psychologist.” NO, not all of us want Jason on the panel. You do not speak for ME.Have a look what he plans to do with the ME ICC and why: http://www.cortjohnson.org/blog/2013/04/28/are-the-canadian-consensus-and-international-consensus-criteria-broken-study-suggests-both-may-select-for-more-psychiatric-patients/. He wants to disassemble the ME ICC>Gradual onset patients would be thrown out; many moderate affected children have no clear onset, but get worse over time by being pushed merciless through a school system which does not recognize they are sick. There is so much more I could say about his approach which I think is questionable. For example how he chooses his patient based on symptoms criteria: not one was tested for immune abnormalities or active infections – as per ME ICC criteria a important inclusion criteria. Or how he emphasizes fatigue as a core symptom. ME patients do not suffer from fatigue, they cannot produce sufficient energy on demand because they are sick! Or the fact that he researches CFS and CF http://condor.depaul.edu/ljason/cfs/ , establishing centers which offer psychological counseling, but not even considering that the priority should be a referal to specialist such as immunologist and infectious disease specialist for testing and treatment. Or the fact that he receives grants from the National Institute of Allergy and Infectious Diseases to research CFS and CF , but not ME ! and publishes his work where? Health Psychology and Behavioral Medicine ! HE IS WHAT HE IS !

    You are repeating the same mistake advocates have made over thirty years – you allow the travesty to go on.

    There is only on answer ZERO TOLERANCE FOR PSYCHOLOGIST, PSYCHIATRISTS AND PSYCHOSOMATIC RESEARCH/ERS IN THE FIELD OF ME.

    • Jennie Spotila
      December 19th, 2013 at 12:37 | #5

      I don’t share your assessment of Dr. Jason, but I do sincerely hope you will submit feedback to IOM on this point. I agree that there is no room for the psychogenic view!

  5. Anushka
    December 20th, 2013 at 06:30 | #6

    Jennie, this is not a matter of personal opinion. It is a matter of principal, what has hurt us most and what serves US WITH ME.

    There is only one answer
    NO MORE INVOLVEMENT OF THE PSYCH LOBBY IN ME.

    ESTABLISH THE ME ICC FOR MEDICAL PRACTITIONERS – WITH IMMUNE MARKERS – NOW!

    GET BIO MEDICAL RESEARCHERS INVOLVED, SUCH AS IMMUNOLOGIST FROM THE FIELD CANCER AND INFECTIOUS DISEASE SPECIALIST WHO CAN ACTUALLY UNDERSTAND AND EVALUATE IMMUNE MARKERS, TO GUIDE FURTHER RESEARCH INTO ME.

    ALL WHO WERE INVOLVED IN THE MAKING OF THE ME ICC HAVE TO BE INVOLVED.

    MOTHERS WITH ME, WITHE CHILDREN WITH ME, HAVE TO BE INVOLVED IN THE DECISION MAKING FOR PEDIATRIC GUIDELINES AND FURTHER RESEARCH.

    ANYTHING ELSE IS SELL OUT AND UNACCEPTABLE.

    ZERO TOLERANCE FOR PSYCHOLOGIST, PSYCHIATRISTS AND PSYCHOSOMATIC RESEARCH/ERS IN THE FIELD OF ME.

  6. Anonymous
    December 23rd, 2013 at 18:05 | #7

    @Anushka

    Anushka, part of the reason why Dr. Jason is so valuable is *because* is he is psychologist; when it comes to countering arguments about topics like why CFS is not the same as depression, he knows how to explain to professionals why the two are different.

    [For an analogous example, look up Wendell Potter, a top retired health insurance executive and his role as a whistleblower in Congressional testimony about health insurance company shenanigans.]

    It seems like you’ve already made up your mind without looking at his work so perhaps what I’m writing is just a waste of energy for me but as someone who has read many of his papers on his website, attended his talks, watched him on CFSAC, and even e-mailed/ talked to him in person, I can assure you he is a great scientist who wants the best for ME/CFS patients. Without him and Nancy Klimas, two of the strongest US patient advocates in my opinion, we in the US would be much worse off. You may not know this but Dr. Jason suffers from ME/CFS himself. Here’s an interview of him by the NY Times:

    [http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-expert.html]

    He also collaborates with physicians, immunologists, and other medical researchers.

  7. Ess
    December 23rd, 2013 at 19:53 | #8

    There is also a psychiatrist from Alberta, Canada who is on the signatory list of EXPERTS/RESEARCHERS in the letter to HHS in OPPOSITION to the IoM contract; in fact, she wrote a separate letter adding her name and expressing her views to Sebelius/HHS. THAT, in and of itself, speaks volumes with ‘SOME’ in psychiatry speaking AGAINST the IoM.

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