Exit Stage Right

Another CFS Advisory Committee member has resigned.

After the March 11, 2014 CFSAC meeting, I emailed the Office of Women’s Health and asked for a list of who had attended the meeting. I tried to keep track of the roll call, but there were clearly technical difficulties that prevented several members from answering and it wasn’t clear when they arrived. The CFSAC Support Team responded yesterday:

All of the voting members of the committee participated in the webinar yesterday (n=10), so a quorum was present.  (We have one vacancy – Dr. Dimitricoff [sic] resigned a few weeks ago.)  All voting members were present at the start of the webinar, except one member who was ~ 5-10 min. late. (emphasis added)

I have to wave several red flags here, and I would jump up and down too, if I could:

Red Flag #1: As of this post (March 13th), Dr. Dimitrakoff is still listed on the CFSAC roster.

Red Flag #2: No one mentioned Dr. Dimitrakoff during the March 11th meeting. I thought it was odd that Dr. Marshall didn’t call his name during roll, but assumed that he was simply unable to attend. It is completely inappropriate not to announce to the public that a member has resigned! Do the other CFSAC members even know? When were they told? Why were we not told?!?!?!?

Red Flag #3: This means that SIX members are departing the committee in 2014. That means that a majority of the committee (6 of 11) will be new members this year. In addition, two members were added in 2013 (Ms. Collier in May and Dr. Kaplan in October). And Dr. Nancy Lee currently provides no orientation whatsoever for new members. NONE.

Red Flag #4: Dr. Dimitrakoff was assumed by many advocates to be the heir apparent to replace Dr. Marshall as Chairman. Now it appears that the Chairman will be selected from the five remaining members: Dr. Casillas, Dr. Corbin, Dr. Fletcher, Dr. Kaplan, or Ms. Collier.

The CFSAC is being eviscerated. A majority of the committee will be new this year. Two of the five “veterans” will have served only a year. Of the five “veterans,” only one can be considered an ME/CFS expert, meaning that a significant portion of his/her time is spent on ME/CFS research or clinical care.

I shudder to think what this Committee will look like by the end of 2014 (assuming the charter is renewed in September, of course). Several steps must be taken to mitigate the risks to the ME/CFS community: the six new appointees must be ME/CFS experts and all of them should receive substantial orientation so they can hit the ground running.

 

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19 Responses to Exit Stage Right

  1. Gabby says:

    OAS is driving this this train wreck.

    The charter states: “Of the eleven members, seven shall be biomedical research scientists with demonstrated expertise in biomedical research applicable to CFS; four shall be individuals with expertise in health care delivery, private health care services or insurers, or voluntary organizations concerned with the problems of individuals with CFS.”[4]

    It sounds to me like seven out of the eleven should have expertise in ME/CFS. I think that we can hold them to this, can’t we?

  2. Libby says:

    @Gabby
    Sure hope so, Gabby. Thanks Jennie.

  3. Kathryn says:

    What ME/CFS experts are even willing to sit on this committee? Time and travel are vital
    impediments to those who are serving us.

    We need to compile a list, ASAP, or “you know who” will stack the committee with their like-minded appointees.

  4. Ess says:

    AND—the SHAM / SCAM continues. A RUNAWAY train wreck on a collision course . . . And they know it; the crash IS coming !!!!! Curious and curiouser. Obvious and more obvious.

  5. Ren says:

    @Ess
    The scene from Willy Wonka’s “The Wonderous Boat Ride” popped into my mind, with Oompa-Loompas madly driving the boat while Gene Wilder delivers some frightening speech, and the passengers are all begging for the madness to stop. // Thank you to all who are working to get us safely ashore. // Deep breaths – lots of deep breaths…

  6. Michelle says:

    Dr. Fletcher for chairman — er, chairWOMAN!

    Gawd I’m glad I didn’t listen to the webinar. I’m exhausted just reading about it.

    I’m still given to the “yes, they really are that stupid” explanation for CFSAC. Or rather, the “they just don’t give a s**t.” Combined with the fact that CFSAC has rarely done anything that has positively impacted this disease, it’s always made it awfully hard for me to give a s**t about CFSAC.

    But I am glad you do, Jennie. And then write up the train wreck so that at least something intelligible comes out of all it.

    P.S. Is it just Susan Meier who is being replaced? I thought I’d heard Dr. Lee was too. If not, she has got. to. go.

    • Jennie Spotila says:

      Whoa, where did you hear Dr. Lee was being replaced? It’s been suggested/requested, but I haven’t heard anywhere that it’s happening.

      As far as Dr. Fletcher for chair, I would be shocked if it happened, but I would be happy to eat my words on that.

  7. Ess says:

    @Ren
    That Willy Wonka scene sounds like a picturesque comparison, Ren, of wheels/boats spinning in madness. Gee–I have several ideas for names to compare with Gene Wilder in delivering frightening NONsensical speeches . . . Fill in the blanks.

    And, indeed, there seems to be quite an ‘air of madness’ surrounding ME/CFS–and this madness is certainly not eminating from the patients.

    I wonder — will be movie rights to this saga?

    And who is in line and strategically targeted to TAKE THE FALL for this decades long sham in burying the truth about ME/CFS–and in so doing burying patients with ME/CFS–both literally and figuratively?

    :) Yes, there are many definitely working very hard to accomplish this mission to get us ‘safely ashore.’. We WILL succeed! We have a humanitarian responsibility to do so ! l !

  8. Anonymous says:

    @Michelle

    I don’t think the problem is with CFSAC itself or CFSAC recommendations. Most CFSAC members work hard and do get it right. The problem is the government doesn’t listen to CFSAC and neither do the ex-officios. This is not CFSAC members’ fault – the Congressional charter doesn’t give its suggestions teeth. So although that might not have been your intent, let’s get the anger/ frustration directed at the right groups here. Otherwise, you’re just alienating people trying to help.

    It’s a bit of pet peeve of mine but too many times and not just in this instance, people get angry/ frustrated/ disappointed without examining all the facets.

    In addition, for those who have not been on the other side, you have no idea what CFSAC has PREVENTED. My sense is things would be much worse if CFSAC did not exist or its members did not try.

    Here’s my practical suggestion: if you want specific people on CFSAC, write to CFSAC staff and recommend or endorse them.

    Chronic Fatigue Syndrome Advisory Committee (CFSAC)
    Office of the Assistant Secretary for Health
    U.S. Department of Health and Human Services
    Hubert H. Humphrey Building, Room 712E
    200 Independence Avenue SW.
    Washington, DC 20201
    (202) 690-7650 (Voice)
    (202) 401-4005 (FAX)
    cfsac@hhs.gov (Email)

  9. Jennie Spotila says:

    Patricia Carter posted a list of the nominees identified through a FOIA request:

    http://www.mecfsforums.com/index.php/topic,19619.0.html

    Hopefully you can view that page without being a member of the Forum.

  10. Joe Landson says:

    And on the subject of resignations at HHS… David Wright, late of the Office of Research Integrity, has resigned in a pointed letter mentioning Dr. Howard Koh:
    http://www.washingtonpost.com/politics/hhs-official-pens-a-caustic-resignation-letter/2014/03/13/9d8b5736-aad7-11e3-adbc-888c8010c799_story.html

  11. Billie Moore says:

    Joe, you’ve done a service by posting this. We’re not paranoid after all (no more than we should be). Thank you.

    Billie

  12. kathy d. says:

    Omigod! Incompetence or worse all around this disease and government research in general.
    Wright’s letter is damning. He could not even fill an important staff vacancy. It was part of a secret list of appointments, which didn’t happen.

    We/ME/CFS sufferers could probably get this moving ourselves a lot better. We have a reason to push all this forward. It sounds like the bureaucracy just gets stalled in inertia, indecision, politics, financial problems, red tape, lack of interest. Who knows?

  13. Michelle says:

    @Jennie: Clearly I DID hear wrong. I think my brain conflated Dr. Maier’s announcement at the IOM meeting with Dr. Lee leaving. Please forget (delete?) my above P.S.

    @Anonymous:

    As I’m unsure who you are but guess that you’re either a member of CFSAC or someone from the DFO’s office (OASH/OWH), my response is twofold.

    If you’re a CFSAC member, let me clarify that the references to stupidity and “train wreck” with regard to CFSAC are directed primarily at OASH/OWH and not necessarily members of CFSAC. However, I should note that I am concerned about the increasing number of vacancies over the last year and what appears to be a growing level of dysfunctionality among members (as for who should be on CFSAC, see the above comments for a long-standing list of perfectly suitable nominations). I’m not at all angry with CFSAC members and do believe members of CFSAC work hard and care a lot about this disease (indeed, you’d have to care a great deal to spend four days stuck in a room for 8hrs listening to essentially the same story over and over again — in addition to subcommittee work and your full-time jobs). And I do believe there have been a few instances where CFSAC action has mattered, such as the “change-of-leadership” recommendation in 2010 with regard to the late Dr. Reeves (see Dr. Jason’s article here). But working hard and genuinely caring is not the same as being effective. And you’re correct when you say it’s not entirely your fault. This is a committee that, as you point out, has no teeth and not even enough administrative support from OASH/OWH to be effective in the extremely limited capacity laid out in the CFSAC charter. CFSAC has all the impact of a Congressional non-binding resolution, which is made primarily to placate a constituency and make congressmen & women look good but rarely leads to concrete, tangible action. I would love to be wrong about this and thrilled if you shared how much harm CFSAC has prevented because I’m not apathetic about CFSAC by choice but more by empirical observation — reinforced all the more after reading Dr David Wright’s letter of resignation as director of ORI.

    If you are from the DFO’s office, let me say that I actually do believe that the DFO cares about ME/CFS patients. Unlike many in our community, I was pleased with Dr. Lee’s comments at the IOM public meeting. Indeed in a haphazard, dysfunctional, and at times even downright alienating way, I think the DFO’s office along with the Trans-NIH Working Group may well be helping us and was impressed that it secured a P2P/EbMW grant for ME/CFS. What initially appeared to be several risky, redundant programs started one on top of the other — and often despite vociferous objection from the ME/CFS community — (CDC multi-center study, IOM contract, P2P/EbMW) may, in fact, be a unified approach to giving ME/CFS the uncontrovertible scientific foundation it should have received 30 years ago. At least, that’s what the optimist in me says, despite what many of my fellow patients think.

    The problem has been that an important part of this unified plan — patient relations — has been…shall we say, less than satisfactory, with CFSAC the symbol of how dysfunctional the relationship between the DFO (OASH/OWH) and the ME/CFS community has become. Instead of patients being excited about what could be the best thing that has yet happened to their disease, they fill the CFSAC and other HHS inboxes with vitriol. Instead of constructive biannual interactions between HHS and the ME/CFS community, CFSAC meetings have become ever more spectacular clusterf*%#s with tearful accusations of intimidation and lawyers being hired, little-to-no basic administrative preparation, and technical difficulties of epic proportions (is it just CFSAC or is this an HHS-wide phenomenon?). Instead of basic rules of record keeping and the charter being followed, advocates have to file multiple FOIAs to get even basic information about CFSAC or engage the likes of Public Citizen to see that its charter rules are followed. There may well be some good explanations for all this (as I mentioned here, I’ve really wanted to believe there is one aside from a Hollywood-esque conspiracy theory to keep us all sick, and Dr. Wright’s resignation letter appears to support my longstanding “yes they really ARE that stupid/incompetent” theory — with a bit of secretive and authoritarian thrown in for good measure) but we don’t know what those explanations might be because so far the DFO/OASH/OWH won’t talk to us (aside from lists of FAQs that never actually answer any of the questions frequently being asked).

    My very best guess is that OASH/OWH has a culture unused to dealing with patient populations directly. It does what entrenched bureaucracies do — primarily fill out paperwork and have meetings with other members of the bureaucracy about said paperwork. Its version of caring about ME/CFS is having bureaucrats fill out requisite paperwork and attend requisite meetings. And yes, it doesn’t give a s**t about CFSAC because it gets in the way of that paperwork and those meetings — the truly substantive work with regard to ME/CFS as far as it’s concerned. CFSAC is simply there to let patients blow off steam and provide a semblance of patient involvement. Except this approach doesn’t include patients in the actual decision-making. You know, about their disease which they have to live with long after said paperwork is filled out and meetings attended. Yes, you folks know more about the bureaucratic process that gets us the research and care we need but we know more about what needs to be researched and what needs to be cared for. CFSAC could be a fantastic way of liaising with the community you’re trying to help. And yeah, we pay attention to what you folks do more than other patient populations because we’ve been f***ed over by that entrenched bureaucracy at HHS over the last 30 years more than other patient populations have.

    Jennie’s post on Trust from last September explains in detail why we are so unhappy with OASH/OWH (and doesn’t even include the last two clusterf*%#k CFSAC webinars) as well as why you’re probably — and understandably — unhappy with the patient community. Effective, non-adversarial CFSAC meetings with working technology, advocate-nominated members who have been adequately briefed so they can ask constructive questions followed up by forthcoming, honest answers to those questions as well as other questions from the advocacy community would go a long way to building that trust and making CFSAC something all of us can care about again.

    (Note, I’ll send a copy of this response to the CFSAC email listed at the end of your comment.)

  14. Jennie Spotila says:

    I would prefer that people not make assumptions about the identity of anonymous commenters, especially on the basis of the content of the comment. @Anonymous made some good points, as did @Michelle. I don’t think, however, that we should assume that Anonymous is a CFSAC member or government employee. Just because someone is supportive of CFSAC members does not mean he/she is a CFSAC member. Anonymous is not alone in assigning the real responsibility for CFSAC dysfunction to OWH and HHS.

  15. Michelle says:

    Fair point. I should note that my incredibly verbose comment essentially agreeing in many respects with Anonymous regarding why CFSAC isn’t particularly effective would be pretty much the same regardless of who Anonymous is. Addressing both CFSAC and OASH/OWH helped me frame thoughts that, had I a faster, non-diseased brain, might have been condensed into a single, more generic and shorter comment. ;-)

  16. kathy d. says:

    I think HHS has a lot of responsibility here, as with the rollout of the AFfordable Care Act, and all the glitches. Maybe there are hard-core decisions behind it. Maybe it’s just another blip in the bucket, and not important enough to pay much attention to. Maybe funds aren’t allocated as they should be — we know this.

    Me/CFS just is not a priority at any level of government, even HHS.

  17. Justin Reilly says:

    “Why were we not told?!?!?!?”
    Story of our lives.

    Agree on all points. Thanks for another great post.

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