Musical Chairs

circlechairsUnderstanding the CFS Advisory Committee is not limited to what happens in the meetings. The paths that lead members to their seats at the table are very important too. Regular readers of this blog know that I’ve tracked the nomination sources for all the members. I now have new information about how Dr. Gary Kaplan was nominated to the Committee, and it potentially changes the full context of the Committee balance. In fact, I can now show you a very disturbing trend in which nominations seem to be the most successful under Dr. Nancy Lee.

When Dr. Gary Kaplan was appointed to the CFS Advisory Committee last month, he very kindly gave me an interview. I published a profile of him on October 25th.  I asked Dr. Kaplan who had nominated him to the CFSAC, and he told me that he was nominated a year ago by a unnamed patient of his at HHS. I did not include that comment in my profile of Dr. Kaplan because I did not want to risk exposing this person as a patient, if he or she has not gone public about the illness.

I followed up, as I now do with every new member, by filing a Freedom of Information Act request for all letters of nomination submitted in support of Dr. Kaplan. Amazingly, I received a response a month later (the fastest I have EVER received a FOIA response).

The documents reveal that Dr. Kaplan was not nominated by a patient. Dr. Kaplan nominated himself to CFSAC on August 17, 2011. The FOIA letter further states “there are no other nominations submitted on his behalf.”

Now, there’s nothing wrong with nominating yourself to CFSAC. People do it all the time. What frustrates me about this situation is that Dr. Kaplan didn’t simply tell me that this is what he did. I emailed Dr. Kaplan and asked if he would like to comment on the discrepancy. Dr. Kaplan replied:

You are correct I self nominated for the committee. I submitted the application so long ago I forgot the specifics of the process. I was told about the committee and encouraged to submit an application for selection to the advisory board by a patient of mine who works for HHS.

I certainly hope that this was an honest mistake and fuzzy recollection. The sources of CFSAC nomination are a matter of public record, and are an important part of the operation of the Committee.

Tallying the Members

The Federal Advisory Committee Act requires that advisory committees have a balance of views and members. No single source or type of source should dominate appointments. This is why I have been tracking how the members get to the table. With the addition of Dr. Kaplan to CFSAC, the nomination sources break out as follows:

  • Nominated by CFSAC members: Dr. Gailen Marshall and Dr. Adrian Casillas
  • Nominated by CDC: Dr. Lisa Corbin
  • Nominated by The CFIDS Association: Dr. Dane Cook
  • Nominated by PANDORA: Eileen Holderman and Steve Krafchick
  • Nominated by the Miami CFIDS Support & Advocacy Group: Dr. Mary Ann Fletcher
  • Nominated by academic colleague: Dr. Jordan Dimitrikoff
  • Nominated themselves: Dr. Susan Levine, Rebecca Patterson Collier, and Dr. Gary Kaplan

Nominees from advocacy groups (4 combined) and self-nominations (3) predominate. However, five members will depart the committee in 2014: Marshall, Cook, Holderman, Krafchick, and Levine. Look at what that will do to the balance:

  • Nominated by CFSAC members: Dr. Adrian Casillas
  • Nominated by CDC: Dr. Lisa Corbin
  • Nominated by the Miami CFIDS Support & Advocacy Group: Dr. Mary Ann Fletcher
  • Nominated by academic colleague: Dr. Jordan Dimitrikoff
  • Nominated themselves: Rebecca Patterson Collier, and Dr. Gary Kaplan

Self-nominees will dominate, but barely. Nominations for new members were due October 28th, and we will all be watching final selections with great interest.

However, there is a disturbing trend in the recent appointments that may not bode well for those recent nominees. Six appointments have been made since Dr. Nancy Lee became Designated Federal Officer in late 2011. Half of those appointees (Rose, Collier and Kaplan) nominated themselves, which strikes me as very high. All three also live in the DC metro area, which is another odd imbalance. The remaining three (Casillas, Corbin, and Fletcher) each came from a different source: a current member, CDC, and an advocacy group, respectively.

But more disturbing than the nomination sources is the level of ME/CFS specific knowledge these members have brought. Dr. Fletcher is the only person with ME/CFS research experience, and Dr. Kaplan is the only one with ME/CFS specific clinical knowledge. The rest all acknowledged relatively little familiarity with ME/CFS scientific and political issues. For example, Dr. Corbin said at her first meeting that she was not aware there were any alternative definitions to Fukuda. Dr. Casillas admitted that his first meeting made him recall patients who probably did have ME/CFS that he had not recognized at the time.  Only one of the six, Dr. Fletcher, was known to the ME/CFS advocacy community prior to appointment to the Committee.

Coincidence or master plan? The trend of appointing members with no experience with CFSAC and/or little familiarity with ME/CFS is very troubling. If substantial ME/CFS expertise is not appointed to the Committee in 2014, then the FACA requirement of membership balance will likely be violated, to say nothing of the damage that these neophyte members would do to the Committee’s work.



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24 Responses to Musical Chairs

  1. Billie Moore says:


    Another terrific and very useful piece of research and writing. It needs to be distributed widely. How about to CO-CURE and any Congressional/Senatorial friends of the ME/CFS community? We are being steamrollered by those in charge of CFSAC, and I am sure it is not only Nancy Lee. We need to alert them that we are watching for the makeup of the next round of appointments.


  2. “You are correct I self nominated for the committee. I submitted the application so long ago I forgot the specifics of the process. I was told about the committee and encouraged to submit an application for selection to the advisory board by a patient of mine who works for HHS.”

    That is utterly unbelievable (that he didn’t remember). I am sorry, but forgetting about the self nomination to a federal committee is highly unlikely. This doesn’t add up
    and goes straight to credibility. I am shocked. Not a good way to start out serving patients if that’s his intent.

    • Jennie Spotila says:

      Actually, Jeannette, you are a good person for this question: when you were working, would you have remembered nominating yourself to a committee two years earlier? Because I think I would remember, especially when I ended up on the committee. But I also did not have my own practice with dozens and dozens of cases at any one time. So is it that Dr. Kaplan is really that busy? Or is his clarification unlikely? Recognizing that this is speculation . . . . but I am interested in your take on it.

  3. Ess says:

    Ohhhh, dear–the new trend/ongoing pattern . . . part of the master plan–the CFSAC ‘set-up’ to advise HHS in the way that HHS / CDC predetermines. Thanks much for your detective work and follow-up on this, Jennie.

    Me thinks people know how they get nominated to the committee–ESPECIALLY if they nominate themselves.

    Soooo, just as it has been clumsily deemed that expertise in ME/CFS is not necessary for IOM–so too for CFSAC–the makings of a royal mess — ‘their’ ultimate goal.

    SHAME, SHAME on these ‘professionals’!!!!

  4. Susan Kreutzer says:


    Another great piece of detective work. I think your name may soon be aided to the many distinguished private investigators who have gone before you (i.e. Ironside, Columbo, Magnum P.I. etc… – just to name a few) 🙂

    The work you are doing is greatly appreciated by many of us in the ME (CFS) community around the world.

    Susan Kreutzer

  5. Liz Willow says:

    Of interest, the Autism community has seen its Interagency Autism Coordinating Committee similarly gutted:

  6. Ess says:

    WOW–thank you, Liz Willow. What astounding parallels there are between the Autism cover-up debacle, the Gulf War Syndrome debacle and the ME/CFS debacle.

    The BIG-UNS are really wanting to hide and cover up their tracks as to ‘causation’ and then the subsequent cover-ups–globally. There IS a definite agenda in ‘dismissing’ all of these horrid diseases.

    ‘In my former life’ when I was well and ‘actively living life’ I worked with a number of children with autism; an extreme devastation of life for the individual and the family.

  7. Carrie says:

    Thank you so much for this great article, Jennie. So much goes on that we wouldn’t even know about if not for you, Jeannette, Erica and other advocates who care about these issues. We must remain vigilant. Our futures are at stake.

  8. Andrew Bokelman says:

    Who could we ask to self-nominate. Who are the qualified experts who have not already served?

    • Jennie Spotila says:

      Lily Chu self-nominated this round. There may be others. The deadline was October 28th, so it’s my understanding that nominations submitted now will not be considered.

      Of the US signatories to the expert letter, the following have served on CFSAC at some point: Bell, Fletcher, Friedman, Glaser, Jason, Klimas, Levine, Oleske, Snell, and Stevens. Other experts who have served include: Komaroff, Lapp, Bateman, and Papernik. I know the following US signatories to the expert letter have been nominated at some point in the past: Broderick, Chu, Enlander, Keller, Light, Montoya, and Peterson. There may be others that I’m not aware of.

  9. Ecoclimber says:

    And the people on the committee that have limited knowledge of ME/CFS can’t even take the time – perhaps maybe a couple hours – to gain knowledge concerning this illness so they can perform their duties on the panel. Why be on the board if you have no interest to learn…that should be a clue??

    What this community fails to realize that all these actions although well intention and good, will not change the course of events or policy not one iota within HHS.

    With the example of the Gulf War Veterans before you and now another Federal agency allowing companies to amass wealth in the amount of $600 million dollars from taxpayer backed credits by the consistent practive of violating a number Federal law and statutes causing the burden to land squarely on the backs of students

    The only way you will be able to stop this contract which this community refuses to acknowledge and the only one that can force HHS to act is filing a Federal Class Action Lawsuit for an Injunction or Federal Class Action Lawsuit under RICO (Racketeer Influence and Corrupt Organization Act) against the agency head or heads. It broad scope for discovery would rip open the NIH, HHS, IOM and the CDC activities over the last few years and their connectios to the health industry.

    An alignment with a legal nonprofit organizations that have brought action against the IOM and other Federal agencies in the past which I posted about but was totally ignored is the only option at this stage to stop this process. There is no other way to force HHS to change their stance. You need to have the political will and the powerful alliances arrayed against HHS, you have neither.

    The action of the HHS is a signal that this Auschwitz style contract is nothing more than a IOM death panel for the ME/CFS patients resulting in the inhumane treatment to the point of genocide on a patient community.

    The clock is ticking and if you do not begin to initiate contacts and begin the process. This cause is lost. It’s just that simple.

    HHS can calculate by the numbers the amount of patients opposed and those who support the contract. The winners will be the powerful medical/disability/health insurance industry and the powerful APA. $400 million dollars of lobbying by this sector, you would assume they would pass legislation favorable to these groups since much of their money also goes to special PAC/SIG to help fund the reelection campaigns of those in Congress and the President. They do expect payback for all that money?

    The question is what are you going to do about it? More Crickets…??

  10. Shar Childers says:

    Excellent article as usual. Maybe I missed it somewhere, but do we know who is nominated that wasn’t selected? That seems like it would be really helpful information.

    • Jennie Spotila says:

      Excellent question, Shar. I’ve been trying to get that information through FOIA for A YEAR. I am extremely frustrated, and have had multiple exchanges with the HHS FOIA officer in charge of my request about this.

  11. Ess says:

    You raise some excellent points, Ecoclimber. Interesting that you mentioned Auschwitz-style contract and genocide–could Sir W. be the big ‘H’–who got away with making inroads to his horrors because people didn’t, at first, ‘get’ what he was all about. AND, by then it was too late to stop him.

    Thanks for that info above . . . We are all grateful to those who are doing so much on behalf of standing up for the ME/CFS community, especially in these current challenging times we are in.

    • Jennie Spotila says:

      Technically, neither this comment nor Ecoclimber’s violate my comment policies. However, I must gently point out that there are readers of this blog whose families suffered as a result of the Holocaust. I would appreciate it if people could refrain from using this analogy, out of respect for your fellow blog readers. Thank you.

  12. In dread of what may result from this out of alignment and geared to ditch IOM panel, I give great thanks to all of you for your productive work.
    In agreement with the many who have said the IOM contract is a death contract, I am curious, Ecoclimber, whether a lawsuit, other than injunctive relief, if even that, is even a possibility. “Governmental immunity” has long been a bar to redress. I have no clue as to the current extent of this barrier in any situation but especially the IOM/HHS power grab we are dealing with. I hope I am in the dark ages and the legal immunity barrier has crumbled.
    I hope this issue is brought into greater light. Izola

  13. Ess says:

    Thank you, Jennie, for gently mentioning this . Certainly, no disrespect is intended at all; apologies if any was taken. Ess@Ess

  14. Ess says:

    Thanks for knowing that, Jennie! 🙂@Jennie Spotila

  15. Ecoclimber says:

    There are exceptions to the sovereign immunity bar. Federal Tort Claims Act (“FTCA”) allows certain kinds of lawsuits against federal employees who are acting within the scope of their employment. RICO allows for suing employees or head of agencies but not a Federal agency or the government for egregious, illegal and unlawful acts committed in violation of the Constitution, Federal Law or Statute.

    This is an article that talks about a group of lawyers filing a lawsuit against the EPA.

    Federal Tort Claims Act, 28 U.S.C. § 1346(b)(illustrating one of the limited circumstances in
    which Congress has passed legislation waiving sovereign immunity

    28 U.S.C. § 1346(b)(1), giving the
    federal district courts jurisdiction over claims against the United States

    There is also classic CONSPIRACY AGAINST RIGHTS (18 USC 241) and DEPRIVATION RIGHTS UNDER COLOR OF LAW (18 USC 242) violations.

    Besides, it’s a moot point if filing against the IOM

    Major U.S. Supreme Court FOIA Cases

  16. Amanda rankin says:

    Is occupy cfs drafting a comment that patients can sign to submit for comment in next 20 days ? Supporting the issues identified above. We can drum up support and show a unified front and patient participation

    • Jennie Spotila says:

      Amanda, we’re working on two projects. First, we’re researching the backgrounds as thoroughly as possible and we’ll be reporting that here tomorrow. Second, I will be drafting an overall opinion piece that looks at the committee balance and where we might be headed. My goal for that is Friday, if my health holds out. At that point, I will assess whether drafting a group comment is worthwhile. For example, if we find a conflict of interest then I would love to see a big push behind protesting that. At a minimum, the posts will provide information on how to submit feedback and provide some basis for doing so.

  17. floydguy says:

    As we’ve seen recently the other important quality is having a spine and speaking out when the need arises. For this I congratulate Holderman, Fletcher and to a certain extent Krafchik. All the knowledge and “qualifications” in the world don’t matter if people don’t speak UP!

    For this reason I have reservations about people like Dr. Bateman. She may be an excellent clinician but her recent flip flop and then subsequent appointment to the IOM Committee does not inspire a lot of confidence that she will be an effective and strong voice.

    re: Kaplan.

    This guy is a weasel. If he can’t remember how he got nominated for CFSAC, he is either brain dead or a liar. Neither of which speaks well about what kind of person he is.

    Good point about the Washington links. At this point DC is completely divorced from reality. The lack of accountability for anything coming out Washington is revolting and most likely won’t end well.

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