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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. J

    Thoughts About M.E.: HHS Violates FACA and Unduly Influences CFSAC

    On the eve of another CFSAC meeting: Another FACA violation by CFSAC plus undue influence on CFSAC by HHS. "So, let’s look at this more closely. Subjectively ... inflammatory, negative or derogatory comments will not even be sent to the Secretary? Nothing “negative?” Are these people serious...
  2. J

    Thoughts About M.E.: Ampligen Price Increase on Shaky Ground

    Did Hemispherx not honor express price representation? Did Hemispherx fail to seek and obtain FDA approval for their price increase? Did Hemispherx include impermissible items in its cost justification...
  3. J

    Thoughts About M.E.: Behavioral Health: Undue Influence by NIH on IOM ME/CFS Study

    NIH insisted on behavioral-health experts being on the IOM panel. So much for the IOM's independence. http://thoughtsaboutme.com/2015/02/09/behavioral-health-undue-influence-by-nih-on-iom-mecfs-study/
  4. J

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

    @Ember: I had the same question. But don't forget, it was a holiday weekend and nothing happens in DC on holidays. Nothing work-related that is. But it is noteworthy that despite their clear FACA violation and the fact that the community is up in arms about it, the still do not provide any...
  5. J

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

    @Roy S Uncle Sam is trying, as always. They are certainly busy right now trying to figure out how to make this go away. @Wally, I think it's best not to discuss legal strategy or arguments in public (or at all for that matter). Part of our ("our" as in advocates) being effective requires...
  6. J

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

    Thanks, Liz! I have no received a reply yet, which boggles the mind given the clear pattern and seriousness of FACA violations with respect to CFSAC. Looks like they are asking for this to be escalated.
  7. J

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

    Please see my blog post at the link below for my letter to Barbara James and some comments from me. http://thoughtsaboutme.com/2015/01/18/faca-request-did-hhs-orchestrate-cfsacs-p2p-comments/
  8. J

    UPDATE: My Email to CFSAC’s DFO Asking if HHS Edited the CFSAC Working Group P2P Document

    Below is Ms. James' reply to my email: And here is my response:
  9. J

    UPDATE: My Email to CFSAC’s DFO Asking if HHS Edited the CFSAC Working Group P2P Document

    Just wanted to share this email that I sent to Barbara James (CFSAC’s DFO) at Barbara.James@hhs.gov regarding a potentially serious concern with respect to CFSAC’s official P2P submission. Hopefully, we’ll get an answer before the meeting on Tuesday.
  10. J

    Jeanette Burmeister vs HHS/NIH - HHS/NIH violated law

    Thanks guys! Any chance we can start a new thread for this historic event? Also, it would be great not to post the entire blog post here. As we now know, the gov't monitors us pretty closely. The more hits my blog gets, the more impact it will have. Posting the entire text here, skews the...
  11. J

    Protest IOM P2P: Advocates Eileen Holderman & Jeannette Burmeister sending letters of protest to HHS

    I don't really have anything to add b/c I feel like the issue has been "briefed" extensively above. It seems that the point that was side stepped in the response above is that HHS will not listen to us no matter how much we engage them. They proved it, e.g, with respect to the IOM panel or even...
  12. J

    Protest IOM P2P: Advocates Eileen Holderman & Jeannette Burmeister sending letters of protest to HHS

    Hi guys, Jeannette here. I am totally crashed at the moment, but hopefully, we'll be able to post a sample letter in a day or two. I agree that it would make this effort much easier. It also streamlines the message. Stay tuned and thank you for understanding.
  13. J

    Dr. Woodcock: Please Approve Ampligen Now!

    http://thoughtsaboutme.com/2013/12/14/dr-woodcock-please-approve-ampligen-now/
  14. J

    CFSAC Meeting Needs to be Rescheduled for a Two Full Day In-Person Meeting

    http://thoughtsaboutme.com/2013/12/10/cfsac-meeting-needs-to-be-rescheduled-for-a-two-full-day-in-person-meeting/ Please everybody write to Nancy Lee requesting this with CCs to Sebelius, Koh and Jones: Nancy.Lee@hhs.gov Kathleen.Sebelius@hhs.gov howard.koh@hhs.gov Wanda.Jones@hhs.gov
  15. J

    Thoughts About M.E.: Inquiring Minds Want to Know: Who is Behind the IOM FAQs?

    http://thoughtsaboutme.com/2013/11/16/inquiring-minds-want-to-know-who-is-behind-the-iom-faqs/
  16. J

    Call for Investigation by the Inspector General of the IOM’s Conflict of Interest With Respect to ME

    Ren, I am sorry you felt berated. that was not my intention and i don't believe that is what i did. i wasn't replying to you, in fact. i am trying to save this effort. i figured that is in everybody's best interest. i am also not saying it's a bad idea to collect information. in fact, that's a...
  17. J

    Call for Investigation by the Inspector General of the IOM’s Conflict of Interest With Respect to ME

    i think trying to make the IOM see that its reputation is on the line is actually a very good strategy, david. they do feel somewhat omnipotent and untouchable. but their reputation is all they have. if they really get worried about that, and they might if we keep the heat on them, they may...
  18. J

    Call for Investigation by the Inspector General of the IOM’s Conflict of Interest With Respect to ME

    i feel sick to my stomach because i just explained the legal strategy for the whole world, including the gov't, to see. giving away one's approach really weakens one's position. but i was basically forced to. it's very unfortunate. Jeannette
  19. J

    Call for Investigation by the Inspector General of the IOM’s Conflict of Interest With Respect to ME

    Ok, let me try to explain again. The additional information is unnecessary at this point, as the most recent report is this year and reflects the alleged bias. In a sense, I do not want to complicate the issue. Even if there were different committees involved in earlier reports (and I am sure...
  20. J

    Call for Investigation by the Inspector General of the IOM’s Conflict of Interest With Respect to ME

    Burying the OIG with complaints is a sure way to look crazy and not be taken seriously. There is a responsibility here to the bigger community not to harm the current effort because it is, I believe, by far our best shot to get this contract stopped. If we mess this up, then that's it. So...
  21. J

    Call for Investigation by the Inspector General of the IOM’s Conflict of Interest With Respect to ME

    i had to strike a balance between giving the OIG enough information to investigate without bogging them down with too much information. Remember that the inspector general is is a neutral party here. he’s not our enemy and we want to keep it that way. if, all of a sudden, he gets a ton of...
  22. J

    November 2013 CFSAC Meeting: 3 Weeks before Meeting, Information for Patients Still Outstanding

    http://thoughtsaboutme.com/2013/10/22/november-2013-cfsac-meeting-3-weeks-before-meeting-information-for-patients-still-outstanding/
  23. J

    Perfect is the Enemy of Good: Why Dr. Bateman's Decision on the CCC is Misguided

    any chance this thread could be moved to the IOM category? thanks!
  24. J

    Opening Pandora’s Box: PANDORA Cozies up to IOM

    http://thoughtsaboutme.com/2013/10/16/opening-pandoras-box-pandora-cozies-up-to-iom/
  25. J

    Principled Approach: Fighting the IOM Contract is a Moral Imperative

    http://thoughtsaboutme.com/2013/10/13/principled-approach-fighting-the-iom-contract-is-a-moral-imperative/
  26. J

    Blog: Discussion of Suzanne Vernon's Response to Criticisms

    after the GWI/CMI disaster, i really wonder how reasonable it is to think that an IOM committee is in the patients' best interest. i respect that it is your opinion, jennie. i strongly doubt suzanne vernon really believes that.
  27. J

    Blog: Discussion of Suzanne Vernon's Response to Criticisms

    One more thing: I am not talking as a lawyer here (as I rarely am these days). To me, a conflict of interest is present in a situation when an individual has more than one interest that conflict and, as a result, one of those interests may be sacrificed for the benefit of the other...
  28. J

    Blog: Discussion of Suzanne Vernon's Response to Criticisms

    I agree, Jennie: I would consider it a conflict of interest for Fred Friedberg or any other potential committee member to lobby for the IOM contract. This is not unique to Suzanne Vernon. What's unique to her is how vocal she is in her support of the IOM contract in direct opposition of our...
  29. J

    Blog: Discussion of Suzanne Vernon's Response to Criticisms

    This is odd: The title of my post was changed. When I posted it, I gave it the title of the blog post, "More Propaganda: Still no Explanation from CAA for Disagreeing with Experts and Patient Majority." . Can that please be changed back. Thanks.
  30. J

    Blog: Discussion of Suzanne Vernon's Response to Criticisms

    http://thoughtsaboutme.com/2013/10/09/more-propaganda-still-no-explanation-from-caa-for-disagreeing-with-experts-and-patient-majority/