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A Public Citizen

February 18th, 2013

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.

 

  1. Amy
    February 18th, 2013 at 12:56 | #1

    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…

  2. Emma
    February 18th, 2013 at 13:24 | #2

    Thanks for this! Will follow with great interest.

  3. February 18th, 2013 at 14:27 | #3

    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.

  4. Roy
    February 18th, 2013 at 14:36 | #4

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

  5. February 18th, 2013 at 14:51 | #5

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

  6. February 18th, 2013 at 17:31 | #6

    Great, Jennie!

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

    Thanks,
    Karen

  7. Rebecca
    February 18th, 2013 at 17:50 | #7

    Well done, Jennie!

  8. Julie Farnham
    February 18th, 2013 at 18:03 | #8

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

  9. Joyce Shaffer
    February 18th, 2013 at 18:08 | #9

    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!

  10. February 18th, 2013 at 18:11 | #10

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

    Thanks,
    Karen

  11. Rivka
    February 18th, 2013 at 19:22 | #11

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

  12. Angela
    February 18th, 2013 at 22:34 | #12

    Thank you Jennie and Public Citizen!!

  13. Gina
    February 19th, 2013 at 00:20 | #13

    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!

  14. Joe Landson
    February 20th, 2013 at 12:16 | #14

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

    • Jennie Spotila
      February 20th, 2013 at 15:21 | #15

      LOL! I don’t think you’ll ever run out of material, Joe.

  15. February 20th, 2013 at 20:29 | #16

    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).
    k

  16. Suella
    February 21st, 2013 at 02:51 | #17

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

  17. Pamela Venus
    February 21st, 2013 at 10:42 | #18

    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,
    PV

  18. Pamela Venus
    February 21st, 2013 at 11:05 | #19

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

    • Jennie Spotila
      February 21st, 2013 at 13:27 | #20

      Emailing you.

    • Jennie Spotila
      February 21st, 2013 at 13:39 | #21

      I tried to reach you through email, but no luck. Email me at jspotila AT yahoo DOT com.

  19. Cathy Corbin
    February 27th, 2013 at 15:53 | #22

    Jennie,

    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

  20. Mary Ann Biddinger
    February 28th, 2013 at 17:26 | #23

    ~Jennie~

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

    Kind regards,
    Mary Ann

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