January 2015 CFSAC Comments: More HHS Disregard for the Law?

Yesterday, I sent the following email to Ms. James, DFO of CFSAC:

Dear Ms. James,

I heard that the CFSAC P2P Working Group had prepared a document for official submission regarding P2P to be discussed at the upcoming CFSAC meeting and that this report was heavily edited by HHS before being sent to the full committee. Is that true? If it is, then I believe the public should see both the original Working Group document prior to HHS’s editing and the document that went to the full committee.

I look forward to your reply.


Jeannette Burmeister

Ms. James replied as followed:

The draft comments, which will be finalized during tomorrow’s meeting, will be posted to the CFSAC website after the Secretary has signed off on them.

I answered Ms. James with the following email:

Dear Ms. James,

Thank you for your reply. I am afraid, however, that it was not responsive to my question.

So, let me ask again: Was the document that the CFSAC P2P Working Group had prepared as draft comments to be discussed at the CFSAC meeting and, once finalized, to be submitted as official CFSAC P2P comments edited by HHS before being sent to the entire committee? If so, would you please make both versions of the document available.

CFSAC patient representative, Donna Pearson, sent an email to several patients who had asked similar questions, in which she gave her view of the events surrounding the P2P Working Group document and the edits made to that document by HHS. Therefore, I am also requesting that all emails between the Working Group and HHS staff concerning the Working Group document and the HHS edits thereto be made available, so that the public can fully understand what occurred.

I am looking forward to your responsive reply.


Jeannette Burmeister

Just to clarify, my request includes all emails among the Working Group members on the subject.

The HHS actions regarding potentially heavily editing the Working Group document raise serious concerns with respect to the independence of he committee and the lack of transparency. These and other related actions will be investigated to determine any potential violations of FACA and other federal laws and regulations, including a potential violation of the requirement to make documents to be discussed at the meeting available to the public in advance.

Thank you.

PS: Dr. Susan Levine, Chair of CFSAC, and Donna Pearson, CFSAC’s P2P Working Group Chair, were copied on my correspondence with Ms. James.

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28 Responses to January 2015 CFSAC Comments: More HHS Disregard for the Law?

  1. Carrie says:

    Thank you for seeking this information, Jeannette. I hope you hear back from Ms. James soon. I know I would like to see both documents. Indeed, we all need to fully understand what occurred.

  2. Mamie Holst says:

    Thank you for what you are doing Jeannette!!!

  3. Kathy D. says:

    You’re back, and with full forth! Hope you had a good holiday.
    It sounds like another FOIA case could be coming up if this very legitimate request is denied.
    What is HHS editing and changing?
    What is going on here? Who is changing what? What is the government’s agenda here?
    Appreciate what you are doing for us and hope your health is better.

  4. Ess says:

    Thank you, Jeannette; this is important!

  5. John Gabor says:

    Thank you Jeannette for trying to keep the HHS honest and accountable. Obviously, both of which are not customary for them. The thought crossed my mind that they have a lot in common with disability insurance corporations.

  6. libbyboone says:

    This should be very interesting. Thanks Jeannette, as always.

  7. Katharina says:

    Thank you, Jeannette. You did a brilliant job, as always!

  8. Utting Wolff says:

    Thank you for your knowledge and hard work.

  9. oniricale says:

    Thank you for what you are doing Jeannette – Again.

  10. Laurel says:

    I would also like to know if they are hiding anything or if there was heavy editing so as to make it more “politically correct.” Thanks for doing this, Jeannette.

  11. Rebecca says:

    Thank you, Jeannette!

    I cannot believe Barbara James is stonewalling you on this. Doesn’t she realize that you sued the government, and won? And that when James’ documents are eventually made public, it will be obvious if she was lying or concealing information?

  12. Kathy D. says:

    Just read that those running the House in Congress now want to cut federal disability benefits by 20% next year. I don’t think that bodes well for others and other long-term illness sufferers.

  13. LoKee says:

    Thanks again, Jeannette! Said before but will say it again: We’ve needed someone like you on the legal end for sooooooo long; you’re a true Hero for the cause!

  14. jim says:

    Way to go! You’re making holes in their dike faster than they can plug ’em.

  15. Gabby says:

    When I saw your original e-mail, I sent one to out to Barbara as well indicating my concern about this. I have not received a reply from her. Thank you for informing us about this and following up with it. This HHS web is getting curiouser and curiouser.

  16. Lisa Petrison says:

    Thanks, Jeannette.

  17. Ess says:

    In follow-up to yours, Jeannette, I also sent an e-mail to Barbara James — not even an acknowledgement by way of requested ‘read-receipt.’

  18. Sue says:

    Many thanks, Jeannette.

  19. I find it astounding that some of you haven’t even gotten the meaningless reply I received. Government officials blowing off ME patients again and again.

  20. Deborah Waroff says:

    Thanks once again Jeannette. You are a hero. Are Donna Pearson’s comments in response to those who wrote asking questions publicly available anyplace?

  21. Pingback: FACA Request: Did HHS Orchestrate CFSAC’s P2P Comments? | Thoughts About M.E.

  22. I was hoping that a change from Kathleen Sebelius to Sylvia Mathews Burwell would make a difference; evidently, not. It is evident that control is coming from an unknown source. Someone or some entity DOES NOT want ME sufferers to be recognized as people who are REALLY SICK. We are so thankful for your efforts, Jeannette, and we are very much appreciative of all your work and expertise in keeping us informed.

  23. Magdalena says:

    thank you so much, as always!

  24. justinreilly says:

    Thank you very much, Jeannette! Excellent work as always.

  25. Kathy D. says:

    The government and insurance companies do not want to spend more money on disability payments and health care, be it private, or Medicare or Medicaid. In fact, they want to cut back. There has been a concerted attack on federal disability benefits in the media for a few years, and now that threat may become a reality. And, very obviously, the federal government does not want to spend more money on medical research.
    So, fight on, we must. Bravo Jeanette.

  26. Ess-OriG says:

    It is mainly M.E.–ME/CFS that the federal government does not want to spend money for BIO research; there is money for what they want money to be for. And that decades-long government CAPER/SCANDAL is spreading debilitating disease–M.E.–ME/CFS and beyond–further and further. As such, TPTB are doing HUMANITY a SUPREME INjustice with this HARM to life. TPTB are effectively DEStroying global human life with their LIES and their SECRETS.

    AND if the government did their job in protecting human health and safety to begin with — and starting NOW — there would not be such DISability — that government has DIRECTLY caused.

    Fix your MESS–HHS–NIH–CDC!! We want our lives back! AND we want the STOP of the spread of this horrid disease — M.E. — ME/CFS!

  27. Pingback: Another CFSAC FACA Fail: DFO Misconstrues Law | Thoughts About M.E.

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