A Public Citizen

When I wrote about the CFS Advisory Committee’s creation of a High Priority Recommendations document and how their process violated their own charter, many people asked me “What can we do about it?” Today, I can finally tell you what I did.

I contacted Public Citizen, a non-profit organization with the mission of serving “as the people’s voice in the nation’s capital.” Public Citizen has litigated cases under the Federal Advisory Committee Act, and has a Health Research Group that advocates for safer drugs and medical devices, equitable access to health care, and other issues.

On February 14th, Public Citizen sent a letter on my behalf to William B. Schulz, Acting General Counsel of the Department of Health and Human Services (you can read the full letter here). The letter details what I uncovered about the High Priority document, and asks the General Counsel to do two things:

We ask that you act to ensure that CFSAC complies with FACA and with its own charter going forward. We also ask that you return the January 2012 “High Priority Recommendations” document to the full committee for review, so that whatever action CFSAC chooses to take regarding those recommendations or any other transmission to HHS be debated and approved by the full committee, in public, as required by FACA.

It remains to be seen whether the General Counsel will act, and what he will do. There has been no official response as of today. However, upon checking the CFSAC website, I found that the High Priority document has been removed from the website. Perhaps this is a first step in correcting the Committee’s error.

I extend my sincere thanks to the people at Public Citizen who moved so quickly to assist me in this way. Sometimes, I feel like no one outside the CFS world cares about what we’re dealing with, and that requests for help will be met with disinterest or active disbelief. But Public Citizen did not dismiss my concerns or our disease. They recognized the public interest in the proper operation of advisory committees, and moved to help us. I am grateful for their assistance and support.

So what can you do? Help me boost the signal!!! Share my blog post, circulate it on Facebook and Twitter, and write about the Public Citizen letter on your own blogs. Tell your support groups and share it with all your contacts in the CFS world. Let’s ensure the community is informed about this action, and let’s monitor the progress together.


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26 Responses to A Public Citizen

  1. Amy says:

    Jennie, thank you for being a diligent steward of transparent public process. I’ve worked with government almost all of my career, and I always find these lapses of established practice mind-boggling–such a silly procedural way to make one’s self and one’s institution a legitimate target of skepticism and further scrutiny. I’d like to believe that the CFSAC leadership is well-intentioned in trying to move recommendations forward, and I’d like to think they don’t understand how these sloppy actions undermine the very legitimacy of the Committee. I’d like to think the Committee isn’t just a beard. I’d like to think…

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  3. Emma says:

    Thanks for this! Will follow with great interest.

  4. Jocelyn W. says:

    Awesome, Jennie. When I read your last post, I saw some of the spots where things had been done wrong – I worked with a couple federal committees when I was at the California Tree Fruit Agreement. However, I hadn’t the faintest idea what to do next, because in my case our federal liaisons were always there at the meetings to put things back on track if they threatened to go off. I’m glad you did. And I wish CFSAC had those folks…at least I’m assuming they don’t.

  5. Roy says:

    Thanks for doing this, Jennie.
    I’ve been enjoying watching you evolve as an advocate.

  6. Brenda says:

    Much thanks for your efforts Jennie Spotila…..I greatly appreciate your efforts. It’s also good to know about Public Citizen….

  7. Karen Luoto says:

    Great, Jennie!

    Keep up the good work. Will let the readers at Phoenix Rising know about this.


  8. Rebecca says:

    Well done, Jennie!

  9. Julie Farnham says:

    God bless you for taking this helpful step. I had no idea about this situation!

  10. Joyce Shaffer says:

    Thanks, Jennie, for your hard work. Many of us with ME/CFS would love to do it, but our health prevents us from doing so. I appreciate you!

  11. Karen Luoto says:

    @Karen Luoto
    I see you posted to PR already. Let us know what else we can do to help.


  12. Rivka says:

    Good work, Jennie. Public Citizen has a long and excellent history nationally and in Wash DC. — Best, Rivka

  13. Angela says:

    Thank you Jennie and Public Citizen!!

  14. Gina says:

    Thank you very much Jennie and Public Citizen! This is very wrong and I appreciate your efforts and amazing advocacy! I wish I had half the brain I used to but am so grateful for yours. I can’t believe what a huge disservice our “designated federal officer” did to the sick patients that look to this committee for advocacy and improved health outcomes by violating the charter of CFSAC.

    Thanks again for bringing this to the attention of many concerned citizens and patients.

    I don’t think President Obama will be happy about this. I truly believe he wants transparency in our Country, and this type of exclusive meeting discussion isn’t transparent!

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  16. Joe Landson says:

    Very disappointed. How can I poke fun at CFSAC in my testimony if you clean up and reform it? 😉

  17. cfsboston says:

    You totally rock, Jennie!!!!

    I just shot-off an email to Carome (and the folks at PCHRG) too (citing my federal testimony, and trip to Montagnier’s lab facilitated by the UN).

    Overthrowing Allied NATO government would be a great first step in making CFS & ME progress!!!

    Keep up the great work!

    Be (as) well (as possible).

  18. Suella says:

    Well done Jennie. thank you so much for using your energies on our behalf. Much appreciated and admired!

  19. Pamela Venus says:

    Yesterday I watched How To Survive a Plague about the brave activists who fought for & demanded the necessary research & medication for treatment of Aids. I was thinking, this kind of action is exactly what the CFS/ME community needs–& here it is the very next day!!!!!
    We need to be proactive in fighting for our health, our lives & research & treatment for CFIDS!!!
    Love & blessings,

  20. Pamela Venus says:

    Please contact me so I can become involved in CFIDS advocacy. Any chance of placing this blog on FB to raise awareness & community effort?

  21. Cathy Corbin says:


    THANK YOU for working so hard to help the voices of CFS/ME patients to be heard! If there are things that local CFS support groups can do to help the CFSAC understand the importance of being honest and fair to CFS patients, please let us know.

    Cathy and Tom Corbin
    Northeast KY CFS/FM Support Group

  22. Mary Ann Biddinger says:


    Wonderful you are to be an endearing advocate voice for CFS/ME.

    Kind regards,
    Mary Ann

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