How Did They Get Here?

I’ve been following the work of the CFS Advisory Committee closely, and after the latest group of new members were appointed I wondered who had nominated them. I’ve done some research, and the answer might surprise you.

Just getting this information took some effort. I emailed the CFSAC on June 25, 2012 requesting a list identifying what individual, organization, agency, or entity nominated each of the current voting members of the CFSAC. On July 17th, the CFSAC responded:

We do not keep records on which individuals or organizations nominated the CFSAC members.  Some members nominated themselves, which is definitely permitted. (emphasis added)

I was rather surprised at the claim that the Committee did not maintain records on nominations, and in fact I found that General Records Schedule 26 requires that information on requests for approval of nominees and appointment documents for individual committee members be maintained for six years. Either the Committee staff was violating federal records requirements by not maintaining those files, or their response to my request was misleading. I did what any determined ex-lawyer would do: I filed a FOIA request on July 23rd. On September 20th, I received copies of the letters and emails that nominated the current voting members of the Committee. Here is what I found:

  • Dr. Gailen Marshall, Chairman of the CFSAC was nominated by Dr. Ronald Glaser. At the time of he submitted this nomination (September 2009), Dr. Glaser was serving as a member of the CFSAC. Dr. Marshall was appointed to the Committee on May 10, 2010.
  • Dr. Adrian Casillas was nominated by Dr. Gailen Marshall in August 2011 (while Dr. Marshall was serving as a member) and was appointed to the Committee on June 13, 2012
  • Dr. Dane Cook was nominated by the CFIDS Association in September 2009, and was appointed to the Committee on May 10, 2010.
  • Dr. Lisa Corbin was nominated by Dr. Ermias Belay of the Centers for Disease Control in August 2011. Dr. Belay first served as the ex officio representative from CDC to the CFSAC several months later in November 2011. Dr. Corbin was appointed to the CFSAC on June 13, 2012.
  • Dr. Jordan Dimitrikoff was nominated by Dr. Hope Ricciotti, Vice Chair of the Department of Obstetrics and Gynecology at Harvard Medical School in September 2010. He was appointed to the Committee on May 10, 2011.
  • Dr. Mary Ann Fletcher received multiple nominations over the course of several years. In September 2009, both Dr. Glaser (a member of the CFSAC at the time) and Dr. Fred Friedberg of the IACFS/ME submitted letters in support of her nomination. In September 2010, the Miami CFIDS Support & Advocacy Group nominated Dr. Fletcher, and two individuals also wrote in support. Finally in August 2011, the Miami group nominated her again four individuals wrote in support. Dr. Fletcher was finally appointed to the Committee on June 13, 2012.
  • Ms. Eileen Holderman was nominated by P.A.N.D.O.R.A. in September 2009 and was appointed to the Committee on May 10, 2010.
  • Mr. Steven Krafchick was also nominated by P.A.N.D.O.R.A. in September 2009 and was appointed to the Committee on July 1, 2010.
  • Dr. Susan Levine nominated herself to the Committee in September 2009 and was appointed to the Committee on May 10, 2010.
  • Dr. Ann Vincent was nominated in October 2010 by Dr. J. Michael Miller of the Centers for Disease Control. Dr. Miller was serving as the CDC’s ex officio representative to the Committee at the time. Dr. Vincent was appointed to the Committee on May 10, 2010
  • Dr. Jacqueline Rose nominated herself to the Committee in August 2011. She was appointed on June 13, 2012, but then resigned several weeks later.

I am struck by the distribution of nomination sources: two members (Dr. Vincent and Dr. Corbin) were nominated by the serving ex officio representative from CDC; two members (Dr. Marshall and Dr. Casillas) were nominated by serving voting members of the Committee; four members (Dr. Cook, Mrs. Holderman, Mr. Krafchick, and Dr. Fletcher) were nominated by CFS organizations; two members nominated themselves (Dr. Levine and Dr. Rose); and the last member (Dr. Dimitrikoff) was nominated by a colleague at Harvard. This does not look random to me. It looks more like a score card with careful selection among the different sources. Consider the 2012 appointees: one successful nomination each from CDC, a Committee member, a CFS organization, and a self-nominee.

I am concerned that most of the researchers and doctors being appointed do not have CFS as their primary focus. In nominating Dr. Vincent and Dr. Corbin, CDC highlighted their experience in integrative medicine, and both of them are directors of clinics that focus on fibromyalgia and chronic fatigue patients. Dr. Dimitrikoff is an expert in chronic pelvic pain syndrome, and his CFS experience is based on its overlap with CPPS. Dr. Marshall has treated CFS patients, but Dr. Glaser’s nomination letter said his research focus in on psychological dysfunction and immunoregulatory changes in a variety of conditions, including CFS.  I’ve previously reported on Dr. Casillas’s expertise in immunology but not focused on CFS. Only Dr. Cook and Dr. Fletcher conduct a great deal of research on CFS, and Dr. Levine treats many CFS patients. Dr. Fletcher is the only CFS expert to be appointed to the Committee since 2010.

Another trend is the decreasing success of nominations from CFS organizations. While four current Committee members were nominated by organizations, Dr. Fletcher is the only successful nominee since 2010. With the addition of three non-voting organization representatives to the Committee in the last charter revision, I am very concerned that organization nominees will have less likelihood of success.

There is a vacancy on the Committee left by Dr. Rose’s resignation. The Committee bylaws (not presently available on their website) require that a vacancy be filled by appointment within 90 days. The CFSAC has not released the actual resignation date, but the 90 days must be expiring soon if it has not already. In a letter to me, Assistant Secretary Koh stated that the 2011 nominations were being considered to fill the vacancy. Will we see a new appointment at the meeting on October 3rd?

Does the source of a nomination matter? I argue that in this context, it does. The trend in the last two years has been towards non-CFS experts, including two successful nominations from CDC. At the same time, Dr. Casillas told me that the new members received no briefing or materials in advance of their first meeting in June. Mr. Krafchick complained at that meeting that he had not received materials in advance either. In my opinion, the Committee must ensure that its membership is sufficiently educated about the issues that come before it. If non-experts are appointed, they must receive adequate preparation and briefings on the issues. Otherwise, the combination of lack of subject matter expertise and lack of advance preparation does not bode well for the work of the Committee, at least not if we hope for recommendations that address the unique scientific and social issues of CFS.

 

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32 Responses to How Did They Get Here?

  1. Kim McCleary says:

    Brilliant work, Jennie. Thanks for the persistent questioning about this issue.

  2. Pingback: Very interesting….. « Speak Up About ME

  3. Sasha says:

    Very interesting – thanks for doing all that work. The lack of knowledge of CFSAC members at the last meeting was a big shock to me – this helps explain why. Too much of that meeting was spent with them trying to catch up to a point where useful discussion could begin.

  4. Claudia Goodell says:

    Thank you Jennie for your diligence.

    This begs the question “What steps can be followed to ensure this committee and it’s members are qualified, prepared and motivated to represent the needs of this illness effectively?”

  5. Tina says:

    yes, very good, Jennie. Doing that research. I was of the opinion that it is good to have a smattering of CFSAC members who did not focus primarily on ME/CFS or who have not been noted as national experts. My thinking is that they will learn through the meetings. And, I do think that is happening, although as you said, administrators could help that along. As long as the majority know it, the babes’ influence would be minimal and they can be trained, listen to patients, etc. And that would improve the whole picture. In other words, we create more experts and more allies.

    But, there is a concern of having people on there who are not experts on ME/CFS, but whose focus has been on a similar illness or related field. When you are a member of the CFSAC, you then are looked to and asked to speak on ME/CFS. It labels you as an expert on the disease.

    So, I see it as a double-edged sword.

  6. Julie says:

    Great job Jennie,

    Thanks for doing this!

  7. Anne Ö says:

    Thanks for all your work! Much appreciated and very important.

  8. Kelly Latta says:

    Jennie,

    Just to play devil’s advocate there may be a silver lining to members not being ME and CFS experts – this advisory committee does have well educated members and it is possible that those with less experience can benefit by being associated with people who do understand the ins and outs of CFS. Or maybe I’ve mistaken tinfoil for silver.

    Seriously, multiple viewpoints are not always a bad thing as they can create a synergy that may be beneficial, Sasha however makes a relevant point as well.

    You don’t add who is on what subcommittee, but it would be interesting for readers to know who is on the research subcommittee for example as a lack of knowledge about ME and CFS and the literature could hamper them there.

    • Jennie Spotila says:

      I absolutely agree that diversity of experience and knowledge base is of benefit to the committee, but it is reasonable to expect that non-experts will be brought up to speed so they can participate meaningfully in discussions. Your question about the subcommittees is an excellent one, and I will try to dig up that information. My recollection is that Dr. Dimitrikoff is chair of the research subcommittee and that Mrs. Holderman is chair of the quality of life subcommittee.

  9. Tom Kindlon says:

    The CDC’s 5-year strategic plan back in 2009 contained:
    ——
    Clinical Intervention Studies

    Clinical behavioral intervention studies will be conducted in collaboration with Emory University School of Medicine, Bibb County Medical Society, Mercer School of Medicine, ***Mayo Clinic***, and UK National Health Service. Anticipated protocol development will begin in late 2010-2011, with studies continuing through 2013.
    ◦Evaluate cognitive behavioral therapy and graded exercise in participants
    ◦Stratify impact of intervention by various parameters including duration of illness, onset type, early life stress, psychiatric comorbidity, cortisol responsiveness, and fMRI changes
    ———-
    I think this study never happened?

    Anyway, Dr. Ann Vincent (who the CDC nominated) is from the Mayo Clinic. I wonder was she one of the people who might have been involved if the study had gone ahead (or might be involved if the study does happen)?

  10. Tom Kindlon says:

    I notice that previously you highlighted the following about Dr. Lisa Corbin (nominated by the CDC):
    “I asked Dr. Corbin about her vote on the CDC’s Toolkit for health professionals. The committee passed a motion recommending that CDC remove the Toolkit from its website, and ***Dr. Corbin voted against that recommendation***.”
    (full piece: http://www.occupycfs.com/2012/07/09/cfsac-profile-dr-lisa-corbin/)

    • Jennie Spotila says:

      Yes, Dr. Corbin told me that she voted against the recommendation because she felt that while the ToolKit was not perfect, it was better to offer that than nothing at all.

  11. Tom Kindlon says:

    Dr. Lisa Corbin (nominated by the CDC) works in Denver, Colorado. Dr. James Jones (CDC CFS program) worked there until starting work with the CDC, as far as I know. I wonder do they know one another.

  12. rivka says:

    excellent research. keep up the good investigative journalism!

  13. Pat says:

    @Tina
    The problem with having so many newbies on the CFSAC is that their term on the committee, prep time for committee meetings, and the time they may spend between meetings on CFS/ME topics, may not amount to a hill of beans as far as learning about the disease is concerned and accomplishing something. They do have phone conferences I believe between meetings. I’ve seen this happen again and again, it is cyclical, and one of the major reasons nothing ever gets done.

  14. Kati D says:

    It is very worrisome to see the current composition of CFSAC. Thanks for your work Jennie.

  15. Thanks for your excellent work to find this out for us, Jennie!

    I agree that theoretically it should be beneficial to bring on doctors who know less about ME/CFS or who are experts in relevant fields like immunology, neurology, etc. But I agree that it’s a problem when they don’t end up being brought up to speed and when valuable Committee time is repetitively spent re-iterating the basics rather than doing actual Committee work. I wonder whether the problem is funding, or needing a better organizer at the help. I feel that Marshall is probably pretty good at organizing, but I’m not sure whose responsibility the in-between things are.

    I also think it would be worthwhile to lobby for CDC influence to be replaced with, say, FDA influence. Let FDA be the government agency to select members.

    Definitely if there is a trend of not selecting members from patient groups anymore that is particularly worrisome. It would also be out of line for how other diseases are managed, right? Doesn’t the American Heart Association, for instance, get important seats at relevant things? Although I think they are physician-led. But I doubt many heart doctors tell their patients, “You know more about this disease than I do”, or “We consider you an expert; let us know what you need and we’ll discuss that”, while many of our patients are told things of this nature by their various doctors. It is not our fault that there is ignorance among physicians, so the best we have is a handful of specialists and an army of educated e-patients. They need to deal with the simple fact that e-patients are a multiplicity of their experts. (not all of us are e-patient experts, of course, but there are a sizeable amount of us)

    • Jennie Spotila says:

      Most of the administrative aspects of the committee are managed by Dr. Nancy Lee, the designated federal officer. Dr. Marshall (chairman) has input, I assume, though to what extent he does so I don’t know.

      In terms of other federal advisory committees, I don’t know about the balance of membership. I haven’t researched that aspect. And I think we have to wait and see if the trend continues away from organization nominees. I will keep tracking this for certain.

  16. Doreen Cameron says:

    Thank you so much for stepping up and persisting to get this information. It is significant in itself that you were stonewalled from the outset of your inquiry. I agree with Tina and the time wasted getting up to speed for new members who are not involved with CFS. How long is the term 2 years? 4 years? I’ve only been to one CFSAC meeting, but it seemed to me not a lot was being accomplished from their reports. The question is how to rectify this and where do we go from here with this information.

  17. cfsboston says:

    This is really interesting information and analysis.

    That said, I don’t think it really matters who is on a CFSAC. Allied government already knows the causes of CFS & ME. CFS & ME will never make all progress until it is acknowledged that our illnesses are 100% political.

    As sufferers, we need to stop naively turning to our government for help//solutions. They are exploiting CFS & ME’ers’ trust in them.

    CFS & ME will never make any progress until we start marching/rolling in the streets (i.e., ACT-UP-style)!

  18. Tina says:

    @Jennie Spotila
    I agree, Jennie. As you know, they seemed very delayed in appointing the new members, even had a later CFSAC this summer because of it. Hopefully, if they bring in someone who is not already an expert, they can be told they must view at least two year’s worth of CFSAC meetings online before they attend their first meeting.

  19. Tina says:

    @Pat
    Well, I do agree that if someone is not already an expert, they should not serve until they have received some background education. Honestly, whether I was given any information, I would go find out myself before I came to my first meeting. Wouldn’t want to embarrass myself.

    If they serve on committee, they are supposed to be on subcommittee that meets by phone in between.

    If there are only two on the committee like that, I can take it. But, I would expect they put forth the effort because they will be thought of as an expert because they serve on the committee. No excuse for their not taking it upon themselves, even if administrators fail to do so. And I do think administrators should prepare the new members and have them look at previous meeting videos and know the material, even if their clinical practice or research is CFS-centric or not.

  20. cfsboston says:

    From what I can assess, there are only two objective subsets of CFS*:

    1) Gulf War Syndrome
    2) NON HIV AIDS/”idiopathic CD4 lympocytopenia” (ICL)

    I believe that if the entire paradigm spent its time researching these 2 objective subsets (GWS, & ICL) the solution to entire paradigm would be unearthed. All other sufferers seem to me to be a big hodge-podge of patients who nothing in common.

    *I don’t include the Lake Tahoe outbreak because I don’t think there is much of it left isolated.

  21. Deborah Waroff says:

    Highly visible noise and political pressure are what got HIV AIDS noticed. We need more of everything — direct communication with powerful politicians as the Millers managed with Obama, demonstrations in the streets and elsewhere, etc.
    We need to turn up more places looking like the patients we are. We need a demonstration in wheel chairs and on gurneys at the steps of the Capitol. Outside the Secretary’s office. We need supporters who are strong enough to push the wheelchairs. That’s where we really fall short of the HIV people. We lack healthy people behind us to make voices heard.

  22. John says:

    I’ve noticed the same thing- for a while the CFSAC was one of our biggest assets and then the powers that be seemed to catch on and start nominating well-intentioned people who didn’t know what they were talking about. I didn’t get a chance to submit a written submission (didn’t understand the instructions) but one thing I would like to see asked at this CFSAC meeting is has the CDC done anything whatsoever to follow up on the Rituximab findings, ie offering resources, helping analyze samples, etc? If they haven’t done anything (which I’m guessing is the case), then why hasn’t the largest CFS research program on the planet done anything at all to follow up on what could be the most promising finding ever in the history of the disease almost a full year after its publication?

  23. Doreen Cameron says:

    I’m sure you thought of this already, but Nancy Klimas was on the CFSAC recently and is probably our greatest advocate. What input did she give you about the committee in regards to its usefulness and dedication?

  24. Justin Reilly says:

    Very interesting! Thanks for the detective work. I agree with your points.

    I would say that Ann Vincent has expertise in “CFS”- at least in the sense that she’s turned out a bunch of fake science for the Mayo Clinic conflating “CFS” and Chronic Fatigue, even regularly using the terms interchangeably in her papers. Not surprised CDC nominated her. She wrote that Dr. Reeves was “a courageous man.”

  25. Justin Reilly says:

    @John
    I agree on both points.

    I think it’s clear that they choose non-experts, since their version of “expert” probably would not want to serve on the committee because they’d actually have to face the patients they persecute and actual bona fide experts who have been on the committee, such as Profs. Jason and Klimas, have gotten recommendations past that, if followed, would require HHS to respond appropriately to ME (which obviously they will do anything to avoid).

    Ann Vincent is their version of an “expert”, but I’m sure they’re hoping patients won’t pick up on that since she isn’t as well known or prolific as a Dr. Reeves.

    Having the non experts there is a great way to have the committee waste time and be ineffective.

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