La La La, I Can’t Hear You

On May 28th, Mary Dimmock and I sent NIH Director Dr. Francis Collins a 38 page packet outlining our concerns that the P2P Workshop will not advance the ME/CFS research field, and may even set it back. We finally got a reply, but it is by no means a response to anything we said.

The reply came from Dr. James Anderson, Director of the Division of Program Coordination, Planning and Strategic Initiatives. The Office of Disease Prevention, which is running the P2P Workshop, is within that Division. Dr. Anderson acknowledges our letter to Dr. Collins:

First, let me applaud your commitment to advocating for patients and their families struggling with this condition. I recognize your depth of knowledge in this area, and I appreciate your outreach to NIH allowing us to provide our perspective on the ME/CFS research and the P2P.

Dr. Anderson then devotes the rest of the letter to an explanation of the P2P Workshop process and expected outcomes. Needless to say, this is information with which Mary and I are already quite familiar, as would be obvious to anyone who actually read our letter to Dr. Collins.

vintagelalalaThat’s it. A two page letter (which you can see here) explaining the P2P process to us, again. No comment on the fact that the review and the Workshop failed to ask if the ME/CFS definitions actually encompass a group of disparate conditions. No comment on their failure to meaningfully engage stakeholders. No comment on the failure to “synergize” with IOM. No comment on ANY of the issues we raised in our letter to Dr. Collins. None.

Is it because Mary and I are not affiliated with a non-profit? Is it because we don’t have PhD after our names? Is it because we didn’t create enough noise, despite the fact that more than 100 of you wrote to Dr. Collins yourselves? Is it because NIH, as an institution, is not interested in the concerns of patients when it comes to science and policy matters? Whatever the reason, Dr. Anderson’s letter is a wordy dismissal. Our concerns – calmly stated and supported by evidence – do not merit a mention, let alone a reply.

Dr. Anderson and NIH may want us to just go away, but we won’t. We’ve already written to the Working Group about the failure to adequately address the case definition issues in the agenda. Now we’re taking our concerns to the Hill.

We have written to our Congressional leadership, asking for their help in requesting that NIH respond to the concerns raised in our letter. NIH may not see itself as accountable to ME/CFS patients or researchers, but it is most certainly accountable to Congress. And Congress doesn’t like being ignored or brushed off any more than we do.

If you don’t like being ignored by NIH, if you think that NIH should address serious concerns in a forthright manner, then write to your own Congressional leadership. Model a letter from ours (below), or write your own. The bottom line is that if we stop, if we give up, then they win. This is what they are counting on: that we are too sick and too small to make much of a fuss.

We deserve better, and we’ll keep fighting until we get it.

 

We are writing to provide you an update on our letter to Dr. Francis Collins regarding the Office of Disease Prevention Workshop on ME/CFS (“P2P Workshop”).

You may recall that we wrote to Dr. Collins on May 28, 2014 to express our concern that the P2P Workshop will not produce scientifically sound recommendations to move the ME/CFS field forward. Our letter included extensive documentation in support of those concerns. We have now received a response from Dr. James Anderson, Director of the Division of Program Coordination, Planning and Strategic Initiatives (enclosed).

We regret to say that Dr. Anderson’s reply was completely unresponsive to our concerns.

He does not even acknowledge that we expressed concerns, let alone respond to any of the evidence included with the letter. Dr. Anderson simply reiterates the same information about the P2P Workshop that NIH has already communicated broadly.

Dr. Anderson’s reply is yet another example of NIH’s persistent refusal to meaningfully engage with ME/CFS advocates. The Solve ME/CFS Initiative, a national organization for this disease, wrote to NIH that “there are serious flaws with the sample search strategy” for the systematic evidence review, and that the search “will bias the evidence base to [psychological and exercise treatment] trials . . . and will fail to assess any of the important biomarker research.” More than 100 advocates have written to Dr. Collins to express their own concerns about the P2P Workshop. We are not aware of any substantive response from NIH to anyone who has raised objections to NIH’s approach.

This is not acceptable. It appears that NIH has no intention of reexamining the scientific framing of the P2P Workshop, no intention of meaningfully engaging stakeholders, and no intention of mitigating the significant risk that the P2P Workshop will impede the field of ME/CFS research.

We are committed to advocating for strong science and public policy in service to ME/CFS patients and their families. But for that to happen, we need your help. We would appreciate any assistance you could provide in requesting NIH respond to the specific concerns we raised in our May 28 letter to Dr. Collins. Please do not hesitate to let us know if you have any questions.

 

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19 Responses to La La La, I Can’t Hear You

  1. Ren says:

    Thank you, Jennie and Mary. I’ll share this next stage of your work with my representatives.

  2. Billie Moore says:

    They all take lessons at the same school – the School for Government Double-Speak. I received a similar letter on Friday as a result of a letter sent by 21 advocates and patients on July 2nd to Dr. Francis Collins, head of the NIH. Different writer, same sort of non-answers, much blather about how committed the NIH is to the ME/CFS cause. Our letter wrote and complained about the defensive and uninterested attitude of the NIH’s new representative to CFSAC (non-voting govt. rep), Dr. Mariela Shirley, at the June CFSAC meeting and her absence from the meeting on the second day. The letter back tells us: 1) how committed the NIH is to ME/CFS and research funding (phooey); what a wonderful set of credentials Shirley has; 3) how the CFSAC charter does not mandate in-person appearances by the govt. ex-officio members (imagine the NIH not showing up at HIV/AIDS meetings); 4) how committed the NIH is to ME/CFS.

    It is definitely time for a Congressional push.

  3. Anne says:

    Jennie,

    About a month ago I received response from Dr Janine Austin Clayton MD, Associate Director of Women’s Health, and Director of the Office of Research on Women’s Health responding on the behalf of Dr Francis Collins.

    Dr Collins is probably having different people from the different departments respond for him. I wrote to him directly, not to Dr Janine Austin.

    First Dr Janine said “We are very sorry for your suffering”, etc.. etc

    Then Dr Janine said to me “We understand the confusion regarding the P2P process and its multiple components, as a response to what I pointed out what is negligent with the study.

    Ive been writing to someone else too who keeps giving me Excuses, Excuses Excuses in regards to the way the review was written, which is in violation of a major bioethics issue… excuses excuses excuses.

    Same thing as the title of your post “La La La We Cant Hear You”. There is probably a Latin song with a dance out there somewhere that has the same title and they are just dancing away, not hearing a word we say…. I should look on your tube for that today :)

    Oh well, we have to keep moving forward!

    Good job Jennie! :)

  4. Carollynn says:

    Thank you for all this effort and help. Count me in!

    Find your House of Representatives rep and contact info here http://www.house.gov/representatives/find/

    Find your senators’ contact info on the Senate site here http://www.senate.gov/general/contact_information/senators_cfm.cfm

  5. Ess says:

    That says it all–doesn’t it!

    You’ve got that right for sure–We DO deserve better AND we WILL keep fighting until we get it!! We’ve got to hit this with everything we’ve got!

    There is also a communication blitz going on at Twitter–with messages to Dr. Francis Collins, Director of NIH, et al–see–#StopP2P4ME. Please join us if you can. :)

  6. floydguy says:

    As someone who worked in the bureaucracy, it was probably a form letter generated by an intern. Dr Anderson probably didn’t even see the letter. It’s probably beneath him to get involved with the riff raff. It really depends on the person but it wouldn’t be surprising if this is the case.

  7. Carrie says:

    Aaaaaaaaargh!

  8. Billie Moore says:

    Janine Clayton was the person who responded to our letter, also. She’s the Director of the Office of Women’s Health. She did read our letter, for what that was worth, but did it or Jenny and Mary’s ever get to Collins? Unlikely.

  9. Sasha says:

    Well done for continuing to push on this, Jennie.

    I think you’re right – there’s some kind of training school where work-experience graduates go to learn how to write pages of meaningless guff on the behalf of their employers in response to serious questions from the public.

    I get exactly the same kind of replies when I write to my MP here in the UK. I’ll complain that the government is wrong to do X, and give my reasons for thinking so and suggest an alternative. He forwards my complaint to the government ministry that does X. The ministry will write to me, after some months, to explain in detail that they do X. End of correspondence.

  10. Anne Örtegren says:

    Very frustrating. Thank you so much Jennie and Mary for your work and for not giving up.

  11. kathy d. says:

    Thank you very much, Jennie, for doing this on behalf of all of us with ME/CFS. I know what energy and effort it takes, and appreciate your careful, thorough work for us.

    Now, aaauugh, too.! The government bureaucrats do all go to the School of Double-Speak. It’s the same as thing as trying to deal with banks and companies. One gets polite letters with no substance, not answering one’s questions.

    I have my own gripe to bring up as another example of double-speak. Since my family history contains a lot of cases of cancer, my doctor wanted me to have genetic testing to see what could be discovered. The testing company called me to say that Medicare won’t pay for these tests “based on family history alone.” Yet, they do have a “low-cost” program, under which people with low incomes can quality to pay a lower rate for the tests. However, guess what?
    People who are on Medicare can’t quality for the “low-cost” testing. Nor can people on Medicaid.

    This is such a Catch-22. Medicare won’t pay but if one is on Medicare, one can’t qualify for the low-cost tests. I asked what the cost is at regular costs: $2,700. It’s $375 if one qualifies for the subsidized tests. This is ridiculous.

    Anyway, when things like this happen, as in the above excellent post, I wish we had energy and could go do civil disobedience in the NIH offices and carry on in the spirit of ACT-UP, which got results.

  12. kathy d. says:

    P.S. The woman at the testing company was very polite and apologetic. As I complained that only wealthy people or those with private insurance can get the testing, but not those of us with lower incomes, retired people and those with disabilities can’t, she apologized. But what good is that?

  13. cathy l says:

    Hope it’s OK Jenine and Mary, I modified your letter and sent it to both NY senators and my representaive Nita Lowry.

    Having just read AHRQ’s new draft paper on treatment in fibromyagila subgroups after their “systematic review of the evidence”, I’m all the more convinced that the P4P is going to be a real disaster for us with ME/CFS.

    I hope to direct another broader based letter to the 21st century cures committe tomorrow.

    If anyone is interested in the fibromyaligia report it can be found here: http://www.effectivehealthcare.ahrq.gov/search-for-guides-reviews-and-reports/?pageaction=displayProduct&productID=1944
    It is open for comments. If I get the energy I do plan to comment.

    Information on the 21st century cures committee can be found here: http://energycommerce.house.gov/cures. It think there is some opportunity for our voice to be heard through this fast sweeping initiative that is looking to change the dynamics of advancing healthcare in the US. Which could work for or against us.

    Finally, for anyone who is interested in twitter I’ve been participating in the staturday evening “twitter storms” directed at Francis Collins director of the NIH. While I doubt any of tweets get to him, hopefully someone is reading them. Twitter does seem to be a simple way to make a lot of noise–it’s very ME patient friendly. I just don’t know if it’s effective.

    • Jennie Spotila says:

      Cathy – not only is it ok, it’s great!!! Thank you! If you are willing, can you email me the letter at jspotila AT yahoo? I would like to track as many of these as possible. Thank you!

  14. cathy l says:

    @Jennie Spotila

    Done! Let me know if you don’t get it for some reason.

  15. Ess says:

    @cathy l

    That’s great to have more people joining the Saturday TWEET STORM Protest! :)

    The tweets are addressed to Dr. Francis Collins, Director of the National Institute of Health, telling Dr. Collins what we think of the ongoing and current attack on the health of ME/CFS patients.

    Additionally, the tweets are a vehicle to get the word ‘out there’ as to the blatant political/medical abuse and gross negligence towards ME/CFS patients by government health agencies.

    This is quite a rodeo we most unfortunately find ourselves held hostage in, locked into, imprisoned in, i.e. having been stricken with the life-stealing-destructing biological disease of ME/CFS.

    Instead of HHS helping us—for 30 years they have abused us and harmed our health further. AND—HHS is in stealth mode to throw away the key with IOM and P2P.

    Anyone that has this wretched disease—will likely have a few words to express to Dr. Collins. Tweets are quick and easy to get your message out there.

    Like the saying goes – How can you win the lottery if you don’t purchase a ticket . . . ?

    #StopP2P4ME Saturdays

  16. Carollynn says:

    @kathy d.
    Kathy D.–I recently came across this group by accident, the Patient Advocacy Foundation. They help people find and fund testing and treatments they need. http://www.patientadvocate.org/. At least that’s their mission. Good luck.

  17. Mary Dimmock says:

    @Cathy l – thank you so much for sending the letter. That’s great. And thank you for calling out the 21st Century Cures committee and the fibromyalgia evidence review. I was especially disturbing to see CFS referred to as a functional somatic syndrome in the FM evidence review report.

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