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.
Thoughts About M.E. 
Thank you for spending your energy credits ( and overspending them) to help all of us.
I skimmed through the P2P recently released document. It was the same old same old. Ridiculous when I think of what they spent on that ( and fighting your request) instead of putting it into research.
If there is any way for you — or someone else — to make it “easy” to know where /who to write to, and voice our complaints and concerns. It would be greatly appreciated. I am sorry I am unable to do so.
good question. here are my suggestions:
Sylvia.Burwell@hhs.gov (Secretary of HHS)
Francis.Collins@nih.hhs.gov (Director of NIH)
Tomfrieden@cdc.gov (Director of CDC)
Thank you, Jeannette, very much for laying this all out so clearly. I am so sorry for the resultant enormous toll on your health that this ‘forced’ legal work has taken. Understandably, that is EXACTLY what happens with exertion in ME. SHAME on the HHS and NIH for their ONgoing bullying tactics to individuals and collectively to the community of seriously ill patients with ME.
This P2P ‘jury model’ is a complete SHAM as is the IOM contract–exacting reasons as you have stated above. HHS is acting in an ONgoing manner that is completely AGAINST our health care.
Stating our opposition/protesting — without any substantive suggestions — is the order of business to follow. Hear this well !!
My protest letter to Francis Collins at the NIH was spit right back at me as undeliverable by the server at nih.hhs.gov
I clicked the link you provided above (thank you for those links btw!), for each email i sent.
The letter to Tom Frieden at the CDC honored my effort with a form letter in my inbox within a nano second of my pushing “send” in my email. Luckily it was in gigantic, poster size purple/blue print begging pardon, but surely I could understand that they are extremely busy at the moment.
Lovely.
Is there ANY hope to cling to? I have been waiting for the promised research based definitions. Something, anything positive. I bought their statement about patient involvement and absolute transparency hook line and sinker.
I’m afraid that I have to accept that my life effectively ended in 2005, when I became too ill to function at a normal level. Now its 2014, I am 53 years old this month. My first grandbaby is just 4 months old. I have a 13 year old high functioning autistic child that is showing overwhelming proof via to sudden health issues and diagnosis, of adolescent ME. I am single. No father in the picture, and my 3 adult children out in the world living with their own health struggles. I am now at the point of acceptance that I have lived my life. I may be breathing, and my heart beating, but, I died, for all practicle purposes, in 2008 when I became unable to care for myself. I am bedridden for over a year now. I contribute nothing ti socuety or my family. Cant read as a hobby anymore. No piano playing, definately no gardening or cooking. I can’t even wash my hair or put on makeup. Im thinking of shaving my head, honestly. I am not living. I am laying here, a mom that isn’t. My daughter that has the baby cries, because her mom cant be the grandma she knew i would have been to my precious grandson. He will never play with grandma, or have hugs and pony rudes in the living room. No baking cookies. And who is going to care for my 13 year old? I have no future, no hope, no purpose. The children that need me dont have me. I lay in this bed, alone all the time except when my son comes in ti do dishes from microwaved and instant nutritional, liquid meals i am able ti ingest. My daughter must csre for her meal needs, and thank goodness shes managing. Family interracts with her in person daily, and handle all things she needs. I thank god for those kids and my mom just moved here to care fir my daughters extra needs. I am blessed in those things.
But, im too young to have my life be over. My 73 year old mother is doing MY job! Im the one that they my children, are expecting to lose at any time, not theur grandmother. And its unnecessary. There is good research. This is cruel and unusual punishment. I’m experiencing a living death, and the health system knows it, and doesnt care.
Im tired, its hard to swipe the keyboard on this mini tablet. Thank you for everything you have done and all you do. I know you’re sick too.
“My protest letter to Francis Collins at the NIH was spit right back at me as undeliverable by the server at nih.hhs.gov”. That’s because of the ‘e’ instead of ‘i’. It should be Francis.Collins@nih.hhs.gov Mine went through with that one.
Thanks, Linda!!!
Ohhh, Maschellemecfs, this is a HORROR show of life granted us / ARROGANTLY and DECEITFULLY stolen from us by HHS. When they read your experience above, like many of ours, I hope they/TPTB get verrry verrrry worried that this too –ME/CFS– will come knocking on their door and that of their family and friends!! Such FOOLS!!
Sending all good wishes to you!
Thank you so much, Jeannette, for all your work for pwme. So sorry for deterioration of your health! Again a very well written piece. Hope that pwme and patient advocates will resist the temptation to participate by making suggestions. In this case cooperation means, paradoxically, to have lost.
Jeannette, you have my most sincere gratitude for your sacrifice in fighting for all of us. We are very fortunate to have among us such a brilliant and strong legal advocate. Just this morning, I was sharing my thoughts on a ME/FIBRO support site about the ironic invisibility of what are hundreds of thousands of people dealing with these illnesses. We have to bring the public attention to this issue. I think here has been some coverage of your efforts in the press, but have you been interviewed yet by a large, mainstream publication? Is this something we should be doing now – creating a message that will cut through all the other mindless crap that people paying attention to, and get this story out? Winning your judgement gives this story further legitimacy in the eyes of the public (who is very quick to assume that bad things only happen to people who deserve it), making this a good time for some media PR.
As a Sociology professor (albeit on permanant disability), I have some insights into the process of creating a “social problem” (an issue that the public recognizes as problematic and in need of fixing) and presenting it in the most effective way to get people’s attention. I am also a pretty good writer, and I’ve been told that my writing evokes in the reader a compassionate interest and identification with my subject (especially when I write about what it means to have ME). While my own writing project of telling the stories of chronically ill women was sidelined when my health and life began to spiral it of control a couple years ago, I’m trying very hard to get myself in a place where I can get back to my work, and be an advocate for the chronically ill in general, and ME patients specifically.
I think your battle against government is a fantastic story of strength, determination, resiliency and frankly, heroism, because everything you do costs you so dearly. Your story is a perfect way to bring the reality of “living” with ME to people without triggering all of the prejudices and stigmas associated with sickness and women. People have to know that women with ME are not just lazy, hysterical whiners trying to get out of work, and the best way to break down that stereotype is to introduce them to women whose actions past and present contradict every negative image people try to apply to us.
I would love to see the idea of your story being pitched to some mainstream and maybe not-so mainstream periodicals. I also want to start talking to feminist scholars about the disgraceful treatment of chronically ill women (I do believe part of the reason that ME and other immune related diseases that women are more than men to have are being subjected to such a level of incompetency, ignorance and downright hostility is because it is seen as a woman’s disease). Feminist, lime everyone else, seem to be blind to the travesty of chronically ill women’s lives and the degree which sexism further erodes their ability to receive care, medical and otherwise.
While I am still scrambling trying to bring my life in order, I would like to volunteer to help you get the word out about what’s going on, and getting your story told. I have published, primarily articles in edited books. And I have also co-edited a book for a Florida feminist group. I didn’t much else published as I was sick through most of the 14 years I was at Rollins College, and I also preferred putting my efforts towards creating unique ways of bringing teaching, activism and community engagement together in such a way that all benefit – I felt my declining energy was best spent trying it ankle a difference in real life than write something just to get my gold star from academia. I still have a couple of unfinished papers on that work, which were sidelined when I went on disability. But truly, I preferred teaching, doing and public speaking to writing. Now, of course, life has left me with inky the latter a means of being productive in the world, and so writing I will do
Please let me know if you feel I can be of help to you and your efforts. I will try to keep spreading the word of what your doing, or more importantly,negative government agencies are doing to us.
A clarification to my previous post….when I suggested engaging in conversations with stakeholders, I meant to do so via social media – identifying, following and engaging with people interested in the social problem u outlined
Reblogged this on The Other Side Of The Stretcher and commented:
Dont Buy The Hype! Protest!
They have done this before, they did the same to AIDS Patients!
Jeannette, excellent report, and I already sent my emails of PROTEST to the above email addresses; with one exception: Dr. Collins’ email address is incorrect. The spelling of his name s/b Francis, not Frances.
I am frustrated by so many who have prostituted this disease for their own personal gain. Thank you for your relentless efforts…I would like to help in some way if needed, I believe in the power of social media. I am not as articulate as you are but if I can help, please feel free to contact me.