P2P: “Pleased to Participate?” Not. Count me out!

Here is my open protest letter to Secretary Burwell (with carbon copies to Dr. Collins and Dr. Frieden) regarding the ME/CFS P2P program. As you will note, I am not engaging substantively at all. Instead, I am protesting the process all the way. Anybody should feel free to borrow the language in this letter in whole or in part for their own letter in this ongoing protest campaign, which can be sent to:

Sylvia.Burwell@hhs.gov

cc:

Francis.Collins@nih.hhs.gov

Tomfrieden@cdc.gov

Dear Secretary Burwell,

AHRQ has asked for public comments on the draft “evidence review” report prepared for the agency as part of the NIH-driven ME/CFS Pathways to Prevention (“P2P”) program. I am one of many patients who refuse to participate in the commenting process. Count me out!

In other words, let me stress, for the avoidance of any doubt, that this open letter is in no way to be construed as participation in, or engagement with, the ME/CFS P2P program. Instead, I protest this ludicrous and dangerously unscientific process in the strongest way possible.

As an ME patient and advocate, I will not participate in this kangaroo court the outcome of which is preordained to set back ME/CFS research for decades and which is so unalterably contrived, ill-intentioned and scientifically unsound as to invite only condemnation, not participation or cooperation.

The “evidence review” report prepared for AHRQ by non-ME/CFS experts is only part of this Kafka-esque charade of a process, the ME/CFS P2P, which will conclude with a two-day “workshop” of individuals who are not experts in the field and a “jury” deliberation of those non-ME/CFS experts who will have all of 24 hours to write the final report.  You or anybody with a scientific background—or with any common sense, for that matter—cannot, in all honesty, believe that this process will result in any scientifically valid outcome. A jury model is about as incompatible with science as one can imagine. Remember Galileo Galilei and how well a jury of non-experts worked for him? Is that how HHS, NIH and AHRQ see their role: in the same vein as the Roman Catholic Church of the 17th century conducting inquisitions and witchcraft trials?

The insincere call for public comments on a rigged game is a contemptible farce. I will not—by giving substantive comments—provide HHS with the opportunity to claim that patients were heard and that their input was considered when any public comments are guaranteed to be ignored, as they were with respect to the IOM panel where comments were also feigned to be sought.

The final report produced by the non-experts will guide future NIH-funded research, which has been at a paltry $5 million a year—an inexcusably and unconscionably pitiful amount for a debilitating and complex disease such as ME/CFS, which, of course, has lead to an irremediably flawed “evidence” base. That in turn, makes the P2P process just about as unfit for this disease as one can imagine. The community is in agreement that a catastrophic result of the P2P process seems to be HHS’s intention. Otherwise, HHS would abandon it immediately before the agency causes more harm to patients by forcing them to continue fighting the P2P at tremendous cost to their health and by ensuring a disastrous outcome for patients delivered at the hands of non-experts.

For your information, I am attaching an analysis of the P2P “jury model” that I wrote after this stroke of genius was initially announced to the public during the first ME/CFS IOM meeting in January.

Sincerely,

Jeannette K. Burmeister

Patient, Patient Advocate and Attorney at Law

cc:

Dr. Francis Collins, NIH

Dr. Tom Frieden, CDC

Attachment:

P2P: “Patients to Purgatory” or the Jury Model Stood on its Head, February 7, 2014

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15 Responses to P2P: “Pleased to Participate?” Not. Count me out!

  1. Ess says:

    Excellent, Jeannette–calling a spade a spade–of this HHS-NIH-CDC-IOM-P2P sham set in motion against the health of multitudes of ME/CFS patients everywhere! It is disgusting and abhorable for a ‘health’ agency in the 21st century — no less the health agency in the USA — to behave in such a devious disingenuous manner continuing to harm patients’ health. Some ‘health’ agency; shameful!

    Sincere thanks to you for sharing and providing your PROTEST letter also for our perusal.

  2. Linda Mills says:

    Sitting ovation!! Terrific letter, Jeannette. Protest, not participation. Mine went to the same people as yours – non-participation – but was not as well written. I’ve had M.E. for 29 years (Moderate and, for the past almost 3 years, Severe) and this sham is still going on. Utterly unbelievable and disgraceful! You are an excellent and intelligent advocate for people with M.E. Thank you. I’m a realist and I know it’s too late for me but we are into the third generation, which is disgusting and shameful. Remember to take care of your own health, as well.

  3. Valentijn says:

    Excellent letter! I hope no one engaged in disagreeing with “scientific” substance of P2P feels put off – I think it’s great that patients and advocates are attacking the problems from all angles.

    I enjoy your blog quite a bit, and I’m very much looking forward to seeing the additional documents you obtained via your FOIA request.

    • Thank you, Valentijn 😀

      Disagreement about strategy is part of advocacy. Those who pushed for engaging did so very hard and often. So, I doubt anybody will take issue. But in any event, I can only follow my conscience.

      I am going to release the add’l P2P FOIA docs as quickly as my health allows. It has been extremely rough, as you can imagine. My health is so much worse than just a few months ago, mostly as a result of the government’s actions in my lawsuit.

  4. Shrley says:

    Wonderful and once again brilliant letter Jeannette! Thank you!

  5. Jeannette, thank you for your protest letter. Beautifully stated! I did copy your letter, with personal revisions, of course, and sent it out. I hope that many patients and advocates will do the same, and flood the email inboxes of the CDC, NIH and HHS. Cannot thank you enough.

  6. p jule says:

    Dear Jeannette,

    I have ME/CFS and would like to write to you privately, do you have an email where this is possible?

    Sincerely, Jule

  7. Best laugh I’ve had all month – very well written. Thank you!! It’s like they’re trying to address a multi-billion dollar problem with a $2,000 meeting. Either they don’t care, or someone could be held liable for the disease so there is stonewalling or they simply don’t have the money to adequately address the problem. I’ve been lied to by many government agencies/personnel so I don’t get to be surprised with all this; what a shame people’s lives are at stake. I have faith that one day someone will wake up to the fact that this is a growing epidemic – and not only will Pfizer suddenly come up with a vaccine, but It’s only a matter of time that someone in the bureaucracy will come down with this or someone in their family and the company line will start to unravel. As in all things political “follow the money.”

  8. Kathy D. says:

    Excellent! Our Amazon warrior! This department and its committee are like nearly all government bureaucracies. Nothing happens unless there is enormous pressure on them. It’s like the way GM dealt with the deaths and injuries due to its faulty ignition switch. Pass the buck, do nothing until it blows up in their faces.
    This is like the Ebola crisis. The CDC had very lax protocols, which officials conveyed to the Texas hospital, and has barely done anything. Then a death occurred and two nurses got sick — and it got media attention, with protests by people all over the country. So, suddenly, the CDC issues stricter protocols and is taking the crisis seriously. But it took a huge crisis and media scrutiny and lots of criticism.
    Just take care of your own health. That matters. This is a long fight. So, remember to “pace” yourself and rest.

  9. Joy hillman says:

    Jeannette: You are a wonder. You have brought us along further than I could have ever expected. Thank you truly. My legal education washed away with my brain. Please take care of you and yours. I, along with, I expect, the ME community, treasure you. Joy

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

  11. Reblogged this on The Other Side Of The Stretcher and commented:
    P2P: “Pleased to Participate?” Not. Count me out!
    Originally posted Oct 21st, 2014

    Jeanette’s blog post about why she was one of the many patients who refused to participate in the NIH P2P!

    Many thanks to Jeannette!

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