IOM Panel Announced

The Institute of Medicine has posted the provisional panel for public review and comment. I am working with a group of advocates to research all the members, seek out bias or conflicts of interest, and bring that information to you as quickly as possible. For now, here is the list categorized by ME/CFS expert and non-expert members.

ME/CFS Experts* (7 of 15)

  • Dr. Lucinda Bateman
  • Dr. Lily Chu
  • Dr. Betsy Keller
  • Dr. Nancy Klimas
  • Dr. Martin Lerner
  • Dr. Benjamin Natelson
  • Dr. Peter Rowe

Non-Experts (8 of 15)

  • Dr. Ellen Wright Clayton
  • Dr. Margarita Allegria
  • Dr. Charles Cleeland
  • Dr. Ronald Davis
  • Dr. Betty Diamond
  • Dr. Theodore Ganiats
  • Dr. Cynthia Mulrow
  • Dr. Michael Shelanski

More to come!!!!!

*Upon further reflection, I think it’s important to note that not all of these folks are experts in the sense that they predominantly work on ME/CFS. However, all of them are known to the community in some capacity and have done ME/CFS related work.

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34 Responses to IOM Panel Announced

  1. Tom Kindlon says:

    I’m pleased to see Lily Chu on the list. I worked with her closely on my paper, “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” ( and was impressed in many ways (e.g. by her intellect, commitment, etc.).

    She wrote this letter in support of the call for the IoM contract to be cancelled and for the Canadian ME/CFS criteria to be used: I think it shows a good understanding of the issues.

  2. Tom Kindlon says:

    Ron Davis is with the Open Medicine Institute e.g.

  3. Carrie says:

    Thanks, Jennie, and other advocates working on this!

  4. Justin Reilly says:

    Jennie, told you they’d pick Bateman, that was a no-brainer since she is a CDC/CAA fatigue fatigue favorite who can be counted on to not stand up to their lies. You need to wake up from the CAA mindset if you want to see things clearly. sorry, I don’t want to hurt your feelings, but I feel this must be said.

  5. Justin Reilly says:

    So, we’ve got a chair who is an expert on the law of genetics and another who is an expert in Latina psychiatry. ‘Nuff said.

    We are counting on you guys to ferret out those hidden conflicts of interest that we know we there and I know you will do a great job at that being our lawyer/sleuth in residence! As you will probably remember from the latest GW panel, there were important undisclosed conflicts including the chair being a director of UnitedHealth, the biggest publicly traded insurer in the US, 17th on the Fortune 500!

  6. Justin Reilly says:

    Our comments were deleted on PR, so I will repeat here that I look forward to your report because of your unparalleled detective work and lawyerly arguments and abilities. You are an extremely dedicated, bright and well educated advocate, more so than I am, imo. Honestly not trying to be a jerk, though it may seem that way. I do really admire and respect you and your work.

    • Jennie Spotila says:

      Thank you, Justin. I sincerely appreciate your comments. I apologize if I misunderstood or was mistaken about your intent.

  7. Toby says:

    Thanks Jennie & the other advocates working on this. I know you will go over the provisional committee with a fine tooth comb. Can’t wait to see the report you guys come up with. Thanks!

  8. Justin Reilly says:

    Thank you for your very gracious response. (If someone said that about me, I might not have been so mature! : ) )

  9. Anne says:

    Jennie, thank you as always for your reporting and advocacy. Much appreciated and so important.

  10. Ess says:

    Always something more . . . that is MOST IMPORTANT to report. Cheering you on with that detective work, Jennie–as always–THANK YOU!! Great to see Dr. Lily Chu on there!!

  11. Joey H. says:

    As always, thank you for doing this so the rest of us don’t have to. I have no spoons for ME/CFS advocacy these days (not a whine, I have a fabulous volunteer job) so while I always appreciate your fine work, it is indispensable to me especially lately.

  12. Michelle says:

    I don’t know about you all, but Martin Lerner is the big surprise to me. Not that I’m unhappy with his selection (not at all!) but generally the medical establishment has not paid much attention to him. Very happy to see Chu and Keller on there, as well as the other ME/CFS docs (of whom I would have been surprised had they not been selected).

    The IOM committee has two options. It can maintain the status quo by doing a glorified lit review, like it did with Gulf War Illness, while ignoring the decades of funding bias that has created the current evidence-base. This will leave the field where it already is: mired in a bipolar “controversy” that provides patients and clinicians with almost no treatment options. Or it can actually move the field forward by finally acknowledging the growing — if woefully incomplete — body of evidence pointing to organic illness for which CBT & GET are simply not going to be adequate treatments. If it ignores half of the members of its panel (and I assume the other 8 are a combo of psychogenic believers and ME/CFS “agnostics” with expertise in disease definition), it will achieve the former — which I don’t believe makes it a “death panel” or “death contract”, just more of the same of what we currently have already. If it listens to these clinician-researchers (and patients — including two on this panel) and takes their experience and evidence to heart, it may well do the later and actually make use of that $1million.

    I still am unclear why IOM is doing a disease definition rather than IACFSME. I am still unclear why this new definition is needed now. And God knows something is still rotten in the state of HHS. But a tiny part of me has been hoping that IOM wants to redeem itself after the debacle of its GWI report, and this panel leaves me (very) cautiously optimistic.

    LOL – I suppose I should do my pontificating on my own ever-so neglected blog (the entirety of which is in draft state until I have some energy to return to it) instead of filling up your comments section! I suppose it speaks to how highly I’ve valued the level of your discourse (and the frequency with which you’re able to post — actually, I’m even a tad jealous of that 😉 ) that I prefer to do what little ME/CFS engagement I can manage here. The golden rule of writing is show, don’t tell. And with all the hundreds of thousands of sentences of telling that occur in the ME/CFS interwebz (my own included), it’s nice to find someplace that focuses on the showing. Thanks.

    • Jennie Spotila says:

      Michelle, I’m glad you are weighing in here! And your compliments of the blog are deeply appreciated, especially as I fuel up for a very intense day.

  13. Ryan Prior says:


    We interviewed Ron Davis and his daughter for our documentary when we were in Silicon Valley. He’s in charge of the Stanford Genome Technology Center, and is literally probably the smartest person I’ve ever met in my life. We were impressed with his resume (essentially founding the field of genomics around 1980) and developing much of the technology needed to complete the Human Genome Project. But he told us he thought his most impressive accomplishment was working his way through undergrad, financing himself as a quadruple major.

    His daughter just finished college on the East Coast and just came back to Silicon Valley so that she could run a non-profit devoted to raising money to support her father’s research. Her brother Whitney (Dr. Davis’ son) is a photographer with severe ME/CFS. To the point where he can barely even text his sister a smiley face. We had arranged to film him but they said Whitney was too sick (as is the case with many of the most severe patients).

    I did feel that Dr. Davis understood the exact definition of ME/CFS less well than most of the experts we’ve interviewed. But he’s very close with Andy Kogelnik, is the smartest person I’ve ever met, and has a son with one of the most severe cases I’ve ever heard of. His story was the most simultaneously inspiring and heartbreaking of our documentary adventure so far. I can certainly attest that he a deep, deep moral calling to figure this illness out with every ounce of energy he has.

    • Jennie Spotila says:

      Ryan, this is extremely helpful! Thank you so much for weighing in. I will probably cite your comments in the writeup on Davis. Thanks again!

  14. Ryan Prior says:

    Also, here’s Ron Davis’ son’s photography website, where he talks about his chronic fatigue syndrome, explains that he can’t do photography anymore, but tells that sells prints to benefit the Open Medicine Institute.

  15. Ren says:

    Jennie and those working with her – THANK YOU so, so much. It really can’t be said enough. Thank you and best wishes.

  16. floydguy says:

    @Ryan Prior

    Thanks for that piece of info. This is especially nice to see after wave after wave of Federal government dysfunction. I have much higher hopes for people like this and Eric Schadt than I do from Elizabeth Unger, Nancy Lee and others who have traded in their “science” credentials for political science jobs.

  17. justmy2cents says:

    What is the rationale for having non-experts on the panel?

  18. Ess says:

    In response to ‘justmy2cents’–This is an e-mail that I received directly from Ms. Meck @ IOM when requesting a MAJORITY of experts to the IOM commiteee.

    “I have been receiving lots of emails from the patient and advocate communities, so I certainly recognize and understand the shared perspective you offered. The IOM staff are working to convene a committee that includes ME/CFS experts, as well as those who are less familiar with the disease, but capable of objectively approaching and understanding the scientific evidence and experiences of the ME/CFS experts and the patient community. Ultimately, the diagnostic criteria recommended by the committee will be used by physicians/clinicians with and without experience in ME/CFS, so the participation of committee members from both perspectives is very important.

    Kate Meck”


  19. Ess says:

    P.S.—and just WHAT ‘scientific’ evidence will be used . . . OLD OUTdated MISinformation ??

  20. floydguy says:

    justmy2cents :
    What is the rationale for having non-experts on the panel?

    Apparently clueless, dimwitted MDs need to have their ignorance represented (according to the IOM, really!). It’s part of government equal “opportunity” regulations (just kidding). Or it’ a diabolical plot to include “useful idiots” who can easily be steamrollered to tow the CDC/insurance company party line (based on past history).

  21. Emma says:

    It seems strange to me, too, to appoint people who are not experts on ME/CFS to the panel. At the very least, ME/CFS experts should constitute the vast majority.

    I would have hoped they would put Dan Peterson and Leonard Jason on the panel!

    Thanks to Jennie and the other advocates for researching and reporting.

  22. justmy2cents says:

    That doesn’t make any sense at all! Would they do that with cancer? Or diabetes? Primary care doctors serve those populations as well, but any diagnostic criteria would be created by specialists. Thanks for providing the quote.

  23. justmy2cents says:


  24. Ess says:

    EXACTLY–EVERYTHING ‘really WRONG with this picture’ !!!@justmy2cents

  25. Anonymous says:

    I don’t work for IOM but I think one reason for including non-ME/CFS experts is for their their methodological expertise (e.g. not a medical content area but a technique like meta-analysis). While all the clinicians in the group happen to have some degree of research experience, this does not necessarily mean they are experts at reading/ interpreting the evidence. Medical school covers some basics but not subjects like study design and statistics in-depth, which is why many docs who do clinical research will have another degree or additional training to do what they do. If you look at other committees, IOM or not, similar compositions can be seen.

  26. floydguy says:

    Anonymous :
    I don’t work for IOM but I think one reason for including non-ME/CFS experts is for their their methodological expertise (e.g. not a medical content area but a technique like meta-analysis). While all the clinicians in the group happen to have some degree of research experience, this does not necessarily mean they are experts at reading/ interpreting the evidence. Medical school covers some basics but not subjects like study design and statistics in-depth, which is why many docs who do clinical research will have another degree or additional training to do what they do. If you look at other committees, IOM or not, similar compositions can be seen.

    Possibly but why have them be part of the “consensus”, ie decision making? Companies utilize attorneys to draw up documents for M&A but they are not typically involved in the decision making of what companies to acquire. Similarly it would seem to make sense to have “methodological” people as resources but not directly involved in the discussion…

  27. Ess says:

    Good points, Floydguy.

  28. Pingback: Info on IOM Panelists | Speak Up About ME

  29. Hermes says:

    The effects of many years of stigma and prejudice against ME and CFS on IOM panel members

    ME and CFS are illnesses which are highly stigmatised in the medical community in the USA and internationally. There is a psychiatric stigma attached to the illness. The press, the media, the medical newsletters, some medical journals and medical based social networks and clubs and circles have fuelled this stigma. Many doctors, including independent doctors have been indoctrinated to believe that ME (CFS) is a psychiatric or psychological illness. All of the non experts on the panel have been affected by this stigma and prejudice against ME and CFS patients. Thus we are outnumbered 8 to 7 on the panel. The actual number in the end may be 9 to 6 as at least 1 member can be expected to waver or become vulnerable to pressure or manipulation.

    While conflicts of interest raise concerns about the integrity of the IOM and NIH, it is the existing stigma and prejudice around ME and CFS which has already influenced IOM panel members which is most threatening. And this will influence their mindsets, their thinking, and the pathway they will choose in research analysis. Its highly probable that all non experts may use their time on the panel to research those areas which reinforce their prejudices and stigma. Also they may even use it as fallback position if the other research areas are percieved to be unconvincing.

    The IOM must move to identify existing prejudices, bias and stigma against ME and CFS among all panel members, with particular attention paid to non experts on the panel.

    All closed and secret meetings of the panel must be made public in order to comply with law. Transparency, accountability and fair procedure are still part of Federal laws.

    The IOM should be asked to replace all non experts with the following experts – Dr. Dan Peterson, Dr. Paul Cheney, Dr. Derek Enlander, Dr. Chia, Dr. Conley, Dr. Sarah Myhill, Dr. De Meirleir. This would enable a thorough, honest, unbiased, objective, independent study to be conducted at the IOM.

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