Invest in ME Conference 12: First Class in Every Way
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Protest IOM P2P: Advocates Eileen Holderman & Jeannette Burmeister sending letters of protest to HHS

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Sep 24, 2014.

  1. Nielk

    Nielk

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    Multitudes of ME/CFS advocates, including Eileen Holderman and Jeannette Burmeister, are sending letters of protest to HHS in opposition to the IOM and P2P. Below are statements from Holderman and Burmeister:

    From Eileen Holderman:



    In October, 2012, CFSAC made a recommendation to convene a workshop of ME/CFS experts (researchers, clinicians, advocates, and patients) to reach a consensus on a research and clinical definition starting with the Canadian Consensus Criteria (CCC). Instead of implementing the recommendation, HHS told Committee Members in subcommittee teleconferences, they would pursue new definitions their way: NIH would address (in part) a research definition with a workshop (called the EbMW, then called the P2P), and HHS and its agencies would pursue a clinical definition (later identified as the IOM Study). When 3 Committee Members sought information and expressed concerns about the proposed initiatives to redefine ME/CFS, HHS shut down the conversations, then called those 3 Committee Members and threatened to evict them from the Committee.

    HHS continued their secrecy about the IOM and P2P, despite efforts from advocates, patients, and other stakeholders to uncover information about their redefinition initiatives.

    Mass opposition to both IOM and P2P from CFSAC members, ME/CFS experts, advocates, patients, and caregivers sent a clear message to HHS that the majority do not want more Government-sponsored definitions for ME/CFS. Like so many advocates, I agree with our experts that HHS should adopt the CCC in all their agencies and use the money instead for biomedical research.

    Therefore, I will restate and reaffirm, in writing, my opposition to both the IOM and P2P, and will send my letter to HHS for the public record. I will list my reasons for my opposition, without making any suggestions, so HHS is clear that I am protesting, and so they cannot claim stakeholder "buy-in" because I sent a letter.

    Please click on the link to my June, 2014 CFSAC Written/Public Comment which enumerates the reasons for my opposition to IOM and P2P:

    http://forums.phoenixrising.me/inde...holderman-cfsac-written-public-comment.31078/

    If you wish to join the multitudes of advocates, patients, and stakeholders protesting the IOM and P2P, please send your letters of opposition (not suggestions - only your reasons for opposition) to the Government officials at HHS:

    Sylvia.Burwell@hhs.gov (Secretary of HHS)

    Francis.Collins@nih.hhs.gov (Director of NIH)

    Tomfrieden@cdc.gov (Director of CDC)


    From Jeannette Burmeister:


    P2P: Don’t Buy the Hype! Protest!
    The reason why I will not cooperate with, or participate or engage in, the P2P process is very simple. HHS and NIH have shown time and time again that they do not have ME patients’ interest at heart. This disturbing and indisputable fact has been confirmed again very recently in my FOIA lawsuit regarding documents relating to the IOM contract (the diagnostic equivalent of P2P), in which I won my motion for summary judgment against HHS and NIH in early September with a ruling by the court that the government violated federal law. The government, in turn, lost their motion for a summary judgment against me. HHS’s and NIH’s conduct in this matter has been dilatory, obstructionist and unlawful.

    I initially filed my lawsuit pro se (meaning without engaging lawyers) because I was hoping that, when faced with a lawsuit, the government would finally comply with the law. I wanted to give them a chance to resolve the matter swiftly and without incurring any legal fees. Before filing my complaint, but sadly to no avail, I even gave them a warning that legal action was imminent, unless they complied. Even after filing my complaint, the government did not avail itself of the opportunity to moot the lawsuit (i.e., end it with a relatively small legal bill) by conducting a reasonable document search. Instead, the government filed a frivolous summary-judgment motion five months after I initiated litigation when they could have used all that time to remedy their prior FOIA violations. When faced with my opposition motion that clearly demonstrated that the government was in violation of federal law, they doubled down by filing another motion making frivolous and meritless legal arguments and misstating the law and the facts—the latter, under penalty of perjury. Even as late as in the oral-argument phase did they incorrectly cite the law, as noted by the court.

    HHS and NIH have wasted the court’s time and energy and worse, they have directly caused my health to dramatically deteriorate as a result of their unreasonable conduct and stonewalling, as the case was factually extremely complex and required my close involvement in discussing strategy with my attorneys, reviewing documents, drafting and revising the motions, etc. This has predictably triggered an intense post-exertional crash, the hallmark symptom of ME. Ironically, HHS and NIH continue to boast of their commitment to our disease. It would follow that they knew about the post-exertional fall-out that their indefensible approach would have on my physical health and yet they passed on every opportunity to right their wrong. Instead, they have done everything to prolong this litigation and drive up my attorneys’ fees. Counsel for the government stated during oral arguments that he didn’t even understand the case until July of this year, six months into the litigation! Half a year! That is how seriously they take this patient population.

    In short, HHS and NIH have acted like bullies vis-à-vis a disabled ME patient whose only “infraction” was to avail herself of her statutory rights. After all that litigating, the court ordered HHS and NIH to do what they should have done more than eight months ago, without a dime spent and without any additional damage to my health: to produce the requested documents. Does anybody honestly believe that the government is somehow—miraculously—going to conduct itself differently in this ludicrous and high-stakes jury-model P2P project when they don’t even take a very simple and straightforward FOIA request seriously and instead fight it tooth and nail contrary to explicit instructions by the US Attorney General for clear-cut cases like mine? Please see “P2P: ‘Patients to Purgatory’ or the Jury Model Stood on its Head” for an explanation of why the jury-model analogy of NIH is preposterous.

    I urge patients and other stakeholders to voice their unambiguous opposition to the P2P in strong, but professional, terms. Opposing this effort means making our voices heard; quite obviously, it is the opposite of silence. Getting our opposition on the record is crucial because the government will try to claim that they had the support of the patient community for P2P when that is clearly not the case, as even most of those who suggest that patients should cooperate with the process are against the P2P in principle. Engaging the government allows them to claim that they took the community’s concerns into account when they have no intention of doing so. Their outreach to the patient community, the comment period, is a mirage.

    The distinction between opposing/protesting and participating/cooperating/engaging is subtle, but very important. To clarify:
    Do not participate or cooperate by making suggestions on how the P2P should be conducted or which areas it should focus on or by engaging regarding the seriousness of the disease, etc. Basically, do not make any substantive comments, in writing or in person at the workshop, because that will, without a doubt, be entirely ignored, as has been the case with the IOM and will allow the government to pretend that our concerns have been heard and will be reflected in the P2P outcome. Remember the changes that were made to the IOM panel in response to patients’ concerns about various suggested panel members’ conflict of interests? No? I don’t either. The make-up of the committee was not changed at all despite a few advocates researching the background of the proposed panel members and finding some troubling facts. The feedback of those advocates was entirely ignored. If the government wanted our input, they would have designed the whole process completely differently instead of merely having one token, hand-picked patient advocate at the P2P workshop purporting to speak for the entire community. Giving our input means legitimizing the farce. Don’t fall for it.

    Opposing/protesting, on the other hand, is stating one’s unequivocal disapproval of this redundant, unscientific and ludicrous effort without making any substantive suggestions whatsoever. This effort is redundant because we already have a research definition that has been adopted by our experts, the Canadian Consensus Criteria. P2P is unscientific because it precludes anybody with ME/CFS expertise from being a member of the P2P panel. And it is ludicrous because the utilization of the jury-model approach in this context is, frankly, beyond comprehension. Therefore, I will send a letter protesting the entire effort in no uncertain terms, but without engaging substantively.

    There is no doubt in my mind that P2P will harm patients greatly and I will have no part in that by being seduced into thinking that my engaging will result in any meaningful effect on the process.
     
    Last edited: Oct 21, 2014
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  2. snowathlete

    snowathlete

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    Thank you to everyone involved, an incredible effort, well thought out and coordinated. So sorry for the impact on health that comes with it.
     
    WillowJ, vli, Valentijn and 4 others like this.
  3. NK17

    NK17 Senior Member

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    Thank you @Nielk. I totally agree with Eileen and Jeannette and I'm going to quote Elizabeth Warren on this thread too because what she's said is very appropriate to this jaded P2P process:
    "If you don't have a seat at the table, you probably are on the menu."
    PWME should have a seat at the table, our doctors and experts should have a seat at the table and we should decide for our future.
    The P2P is a total farce.
     
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  4. *GG*

    *GG* Senior Member

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    Probably the only intelligent thing Elizabeth Warren has ever said. LOL

    GG
     
  5. caledonia

    caledonia

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    If somebody can post a sample letter that could be copied (as has been done in the past), I can turn it into a One Click letter at MEAdvocacy.org and get the word out. That will make this protest oh so much easier.
     
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  6. Jeannette Burmeister

    Jeannette Burmeister

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    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.
     
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  7. caledonia

    caledonia

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    Jeannette, that is awesome - at your convenience...
     
  8. medfeb

    medfeb Senior Member

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    I absolutely agree with Jeannette and Eileen that we must oppose P2P. But where I differ is in the nature and breadth of tactics that we need to use.

    What has been done to ME patients for thirty years and is being perpetuated in this P2P evidence review report is scientifically indefensible and irresponsible. Starting with the fact that the entire “CFS” enterprise as a clinical entity has been constructed on the sole basis of medically unexplained chronic fatigue. Seriously? Where is the scientific justification and evidence that all of the conditions encompassed by the common, ill-defined symptom of fatigue plus the current state of our medical knowledge are the same medical condition that should be studied and treated as one? There is none and there never can be.

    And yet, for thirty years, that pseudoscience has held ME patients hostage in a living hell.

    Such pseudoscience is the bread and butter of those with agendas to keep science from moving forward or to protect their own vested interests. We have seen it with cigarette smoking and acid rain and we are seeing it again with climate change. But you don’t fight climate change deniers by not exposing the flaws, bias and the hidden agendas in their “scientific” claims. You fight them by exposing where their “facts” are wrong, their “science” is unsound and their agendas are driven by self-interest. This is what ME advocates have been doing with the PACE trial and in my opinion is what we need to do with P2P.

    Providing formal input to P2P allows us to expose the “science” of “CFS” for the scientific sham that it is. AHRQ (Agency for Healthcare Research and Quality, part of HHS) must respond to our comments, which become part of the public record that we can use later. Providing such input is as valid and necessary as a form of protest as boycotting or writing letters directly to HHS leaders. All forms of opposition are needed.

    But given the history of this disease, we should be under no delusions that left to its own devices, HHS will listen to our P2P opposition, whether it takes the form of letters to HHS leaders, boycotting the meeting, speaking at the meeting or the submission of comments on the evidence review. Each can be dismissed by those who have chosen not to listen.

    And much more fundamentally, we need to remember that P2P is just one event in a string of utter failures in HHS’ public policy toward ME that stretches back to Incline Village. You all know the issues – lack of research funding, harmful medical guidelines, abysmal medical care, lack of a strategy, the nightmare of insurance, disability and school accommodations and an agency hell-bent on acting unilaterally and with complete disregard of both disease experts and patients.

    Ultimately, the real question is not what specific form our opposition to P2P should take. There is a place for all actions that shine a light on this travesty. Whatever you choose, make sure your voice is heard. Please do not let your silence be construed as consent.

    The real question is what else are we going to do to protest, not only about P2P but also about every other aspect of HHS’ handling of this disease for the last thirty years.

    If ever there was a time for us to revolt as a community, by whatever means available, it is now.

    Contact your congressional leaders and ask every one of your family and friends to do the same. Call your local and/or national media. Twitter. Sue the government. Contact the ACLU. Conduct a lie down demonstration. Protest at P2P. Whatever means of opposition that you can think of and are able to do, just do it!
     
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  9. Kati

    Kati Patient in training

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  10. *GG*

    *GG* Senior Member

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    This appears to be taken from here:

    http://www.occupycfs.com/2014/09/25/mary-dimmock-fight-the-power/#comment-81051

    Right?

    GG
     
  11. Jeannette Burmeister

    Jeannette Burmeister

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    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 the lawsuit. I have no heard anything convincing to the contrary. And that being the case, engaging is just providing cover for them.

    In the end, we all have to go with our conscience.
     
    Last edited by a moderator: Sep 25, 2014
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  12. medfeb

    medfeb Senior Member

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  13. Kati

    Kati Patient in training

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    Hi @medfeb thank you for writing this piece and I cannot agree more with you.

    I am outraged and disbelieved that this is he best foot forward that HHS and NIH has for all of us. It is totally embarrassing.

    What I notice that lacks seriously is leadership within the patient population. (i am not pointing at you or anybody else). This disease is so draining that personal ressources get exhausted very quickly. moreover the aspects of the illness makes it impossible to use cognitive faculties. Patients merely exist. There are a few who do advocacy, and I am thankful for that, however we do not have a united voice. There are different views about how we should tackle the issues at hand. Heck, we cannot agree on a name.

    There is so much work to be done, and yet, we are going in circles. It's discouraging.
     
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  14. caledonia

    caledonia

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    Great post. Let's explore this some more.

    Several of these are already being covered by ME Advocacy.org. However we need to push further.

    Jeannette has already sued the government regarding FOIA requests not being fulfilled. As Jeannette is a lawyer, I would assume that if there were anything else we could sue them for, she would already be on it. Right?

    What about some kind of class action lawsuit? We certainly have a large enough class (1.3 million) that you'd think lawyers would be all over this. Something along the lines of our right to have proper medical treatment is being interfered with by the government?

    Contact the ACLU. This is interesting. I've never heard of this being done before. Has anybody actually tried this? What could the ACLU do for us?

    Demonstration or protest at the P2P. I've been thinking about this. Something like this would be helpful to garner media attention. However, we need to do it in a bigger better manner than we've done before. I have an idea for that too, but it will likely take some fundraising. I don't think the amount required would be that much though.

    I encourage people to sign up at ME Advocacy.org to keep in the loop on actions you can take.
     
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  15. Gemini

    Gemini Senior Member

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  16. caledonia

    caledonia

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    I did see that section of their website. While there's not a one to one correlation with the issues affecting ME/CFS, there is precedence for them taking on disease discrimination and civil rights issues. It seems to me that it would be worthwhile talking to them.
     
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  17. Liz Willow

    Liz Willow

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    There is widespread dissent to what the U.S. government is doing to ME! Others are commenting on the substance of the report. We must counter their voices! But hurry. The deadline for comments is 11:59 Eastern Standard Time, today, October 20.

    A protest comment can be pasted in the "General Comments" section of the AHRQ form. There is no need to enter anything in the other boxes designed for more formal submissions. Comments can be anonymous.

    The rationale behind this action and a sample comment are included in the blog post below.

    http://twenty-years-and-counting.blogspot.com/2014/10/suggested-protest-of-p2p_20.html
     
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