CFSAC: Stand Up for Your Work

I delivered this public comment by telephone at the December 3, 2014 CFS Advisory Committee meeting.

This committee’s legitimacy is at stake. Nine months ago, your March meeting recommendations were substantially altered after your public vote. Documentary evidence that I obtained through FOIA suggests that Dr. Nancy Lee and Dr. Gailen Marshall did this together. Three months ago, I brought this brazen violation of federal law to Dr. Levine’s attention, and two months ago I asked the General Counsel to intervene.

Two days ago, Dr. Lee informed me that your correct and legal recommendations have still not been sent to the Secretary. She said that Secretary Burwell wants to receive your recommendations along with the agencies’ responses to them, and that it will take yet more time to formulate responses to your nine-month old recommendations. Now, this does not make much sense to me. The communication becomes more of an informational memo if the agency responses are given to the Secretary at the same time she receives your recommendations.

The real question, though, is why is the work of this committee repeatedly undermined by HHS staff? It can’t be fear, because if the Designated Federal Officer does not like your recommendations, she may simply violate the Federal Advisory Committee Act and change them. And after getting caught? She will simply drag her feet and take months to getting around to fixing the situation that she created in the first place, with no apparent consequences.

This contempt and disdain is not limited to you, of course. ME/CFS advocates are so irrelevant that HHS does not bother to provide you with our written testimony with even 24 hours to review it in advance of your meetings – another FACA violation that I was promised, in writing, would be remedied. Indeed, the FACA violations are stacking up like cordwood at this point. One legal expert I consulted could only describe this situation as “bizarre.”

This committee is on the verge of allowing itself to be turned into window dressing and a rubber stamp. Why should advocates spend precious energy writing testimony if you can’t read it before your meetings? And why should you invest so much time in working groups and crafting recommendations, if the DFO can change what she or HHS doesn’t like?

CFSAC members, you must stand up and defend the integrity of your work. I still believe this committee can make a positive difference in federal policies and in the lives of ME/CFS patients. But that starts with you. I am one disabled person, and you can surely do so much more than me. ME/CFS patients and advocates need you to fight for us. Please don’t let your work and this Committee be eviscerated any further. I hope we can count on you.

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10 Responses to CFSAC: Stand Up for Your Work

  1. Sue Jackson says:

    Wow, Jennie. Very powerful testimony. I would have liked to see the reaction from the committee (I’ve been out all morning).

    Thank you once again, Jennie, from the bottom of my heart, for speaking for and representing so many of us.


    Live with CFS

  2. Cecelia says:

    From the first meeting I watched Nancy Lee run, I immediately saw these neurotic patterns of splitting, causing confusion, wasting the time of the committee and obstructionism. She knows how to get away with it too. I hope she is caught out and has to pay a price. Another part of her modus operandi include an “innocent” style and a lot of “feminine” eye batting to deflect criticism. I hope that no one is taken in and cuts her any slack whatsoever. Her behavior has been illegal and immoral, and has resulted in the theft from patients of a clear definition, research funding, progress and hope. She has wasted the time, energy and efforts of our few doctors and researchers who have served on this committee during her tenure. I gather that the woman who will be taking over is still under her thumb, so no quarter must be given, no allowances made, no compromises. Compromise and capitulation are unacceptable!

  3. Cecelia says:

    Thank you for your exceptional work!



  4. kathy d. says:

    Very good, very strong. I sincerely hope that what you said is taken seriously and is truly heard.
    I wonder who is calling the shots behind all of this chicanery. What is the policy of HHS to ME/CFS? Is it known to all staff to ignore us and even obstruct us and the advisory committee’s recommendations? Is it a policy that’s in writing or verbal?
    I’d really like to know the truth, as would we all, behind this obstructionism.
    Brave of you to tell it like it is and address the federal law violations.
    It really does feel like a conspiracy by the HHS bureaucrats to do all they can to stop any progress here, to block research fund recommendations or any serious work to figure out the causes of this disease and to describe its real symptoms.
    As a mystery reader, I really want to know the truth as we all do.
    This is mighty fishy to say the least.

    • Jennie Spotila says:

      A policy like that is unlikely to be in writing! I don’t think ALL staff at HHS ignore us. But most of them do not have the power or do not want to take bigger steps to help us. It’s safer to maintain the status quo.

  5. Rivka says:

    Wow, Jennie. I am so grateful to you for taking a stand for all of us. We are so grateful. Thank you, thank you, thank you! This combination of government inaction, calculated manipulation and resulting abuse has got to stop. Do they not realized that lives are on the line? Or do they not care? — Rivka

  6. Words shared increase the probability we will be heard, for if we don’t, the odds are zero.

    Jennie, I have shared the following across my networks.

    Jennie Spotila delivers her testimony at the CFSAC meeting yesterday. “I am one disabled person, and you can surely do so much more than me. ME/CFS patients and advocates need you to fight for us. Please don’t let your work and this Committee be eviscerated any further. ” Read her testimony. Support what she does for all of us. Share her blog with anyone you know who can make a political impact. Share it with just one more person, because eventually it will get where it needs to go. Create a firestorm. The time is now.

    • Jennie Spotila says:

      Thank you so much, Celeste! I agree that boosting the signal is the only way to be heard. I’m glad my words can be a catalyst for that.

  7. Emma says:

    Thank you, Jennie.

  8. Ren says:

    As always, good work, Jennie. Thank you.

Comments are closed.