Collins Responds to Congress

In September, fifty-five members of the House of Representatives sent NIH Director Dr. Francis Collins a letter in support of more ME/CFS research. Dr. Collins has now responded, but it is hardly satisfactory.

You may recall that Representatives Lofgren and Eshoo were the leading signatories on a letter to Dr. Collins in March 2014 that asked him to act on the P2P recommendations and the CFS Advisory Committee recommendations for an RFA. In September 2016, a total of fifty-five Representatives signed a new letter to Dr. Collins at the request of MEAction and collaborating advocates and organizations.

This new letter asked for an update on the Trans-NIH Working Group planning efforts, and specific plans for ME/CFS research through FY 2018. Despite this seemingly modest request, the Congressional letter breaks new ground. I don’t recall ME advocates ever garnering this kind of support from so many members of Congress. Not only that, but this success and the September 27th protests demonstrate a steady increase in support and public pressure. Advocates are justifiably proud of this achievement.

Dr. Collins responded to the letter on September 29th (click the images to enlarge, and my apologies for the image quality):

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What is striking about this letter is that it contains very little news. Let’s take a look at what Collins said and what we know.

  • “[T]he NIH has already funded seven supplements to existing awards focused on understanding the causes and mechanisms of ME/CFS.” We knew about the supplemental funding generally, but this is the first time I have seen a number applied to the effort.
  • “The NIH is preparing two Requests for Applications (RFAs) which will support ME/CFS collaborative research centers and a Data Management Coordinating Center. These RFAs will be released once they are finalized.” We knew this.
  • “The Working Group is preparing a summary of the [RFI] responses and will use the input to help guide future ME/CFS research and research training.” We knew this.
  • “We are finalizing the protocol and the informed consent forms and healthy volunteers are being recruited to participate. The goal is to admit the first set of healthy volunteers next month.” We knew this.
  • “The NIH recently formed an ME/CFS Scientific Interest Group . . . [and] started a bimonthly seminar series with internal and outside experts.” We knew this.

What is missing from Dr. Collins’s letter to Congress?

  • Specific dollar amounts
  • Specific timelines
  • The status of the planning effort
  • Specific activities planned for FY 2017 and 2018

None of this is a shock. These letters are public records, so no information will be included that is not ready for public dissemination. Perhaps the missing elements are in development, but it is also possible that there are no plans for FY 2017/2018 beyond what we know already.

What is surprising is that we are coming up on the one year anniversary of Dr. Collins’s big promise to ramp up ME/CFS research. Regardless of what may or may not be in the NIH pipeline, we should be further along than we are. We should have the RFAs already. We should have dollar amounts and timelines. We should have a sense of urgency. We should have plans for 2017 and 2018.

As Janet Dafoe said at the #MillionsMissing protest on September 27th: we are not pleased yet. We need transformation NOW.

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11 Responses to Collins Responds to Congress

  1. Mary Dimmock says:

    Hi Jennie

    Thank you for staying on top of all this.

    NIH’s response is completely unacceptable!!! No plan to ramp up applications/funding for investigator initiated research, no RFAs for biomarkers and other key biological questions, no plan to fund hypothesis generation, no plan to resolve key barriers impeding clinical trials or to progress clinical trials on drugs already being used successfully off-label. No sense of what financial and strategic commitment the NIH institutes are making. Too slow, too small, too bureaucratic. We’d still be waiting to land on the moon if this was how they planned the moonshot in the 60s.

    One other observation… This would be bad enough if the clock started ticking one year ago. But the IOM report and P2P workshop/draft report was almost two years ago. And the needs expressed in both of those reports had been stated in previous meetings and CFSAC recommendations going back to at least the early 2000s.

  2. You said it: something should have happened by now.

    Words are cheap. Asking people who’ve been waiting patiently for years to wait longer is a way of ignoring us. And people are dying.

    It’s just not quite as dramatic as the AIDS epidemic. But doctors who know say they would choose AIDS over CFS if they had to choose.

  3. Cindy Downey says:

    People in government are telling 30 year ME veterans to wait!!! We’ve been waiting far too long!! But, that’s not all we’ve been doing. We have sought our own treatments, and exerted enormous will to try and maintain some semblance of normalcy, and recover what’s lost. Far from being lazy, or crazy, people with ME work very hard to have a meaningful life.

    Despite ever increasing science proving over and over that we do not have control over this disease, nor have we chosen it, it seems governments see us as the undeserving sick.

    Keep the pressure up on governments to come through, and donate what you can to the real scientists who give a damn.

  4. Jean Williams says:

    Thank you so much for clarifying this, Jennie. I had read about it on Facebook but didn’t understand enough about the background to know what it meant. I have only started to get to know the ME research situation this year, despite being ill for over 25 years, and I really appreciate your blogs. I’m hoping that some answers will come out of the USA where it seems that ME is viewed more widely as a physical illness than it is here in the U.K.

  5. deboruth says:

    Is any one surprised?

  6. cort johnson says:

    Well said – and I agree. That said – one note optimism – Vickie Whittemore say everything is on track! It’s just taking time. We shall see.

  7. kathy d. says:

    Thank you, Jennie, for this rather unsurprising news, and for keeping on top of this.

    I’m ready to have my 31st anniversary with this disease in November and I’d like to know its cause, biomarkers and possible treatments very soon.

    I feel like we should all call Dr. Collins’ office and other bureaucrats at the NIH and object verbally, flood them with calls, since we can’t actually go there.

    I wouldn’t know any of this without this blog, so appreciate it, although the actual news is aggravating. Scientists are out there doing research, many without any government funding — and they are dedicated. Yet they’re not included in the NIH’s scope. Wonder what is behind all of this stalling.

  8. Pingback: NIH moving at bureaucratic pace while ME/CFS metabolomics findings get hotter! – The Microbe Discovery Project

  9. Dr. MC says:

    Every woman affected by ME who wants to find a cure NOW might consider working with local chapter of N.O.W., National Organization for Women. Ask every N.O.W. member to raise awareness with everyone they know to get the other 80% diagnosed, giving M.E. 5X more voice. Concurrently ask every congressional rep, senator, governor, mayor and our new president, first for awareness, then support for $250M per year funding, ramping up to this, but starting NOW. costs maybe $40 per year to join (men and women are both welcomed). When N.O.W. has their national convention in June 2017, it would be great to have enough awareness for N.O.W. members to push to add this to their platform, to ask for not just fair employment etc, but also fairness in funding for all diseases based on disease burdens (DALY’s). The current funding levels represent gross discrimination against women and M.E. Can we get N.O.W.s help NOW?

  10. Laurie P says:

    My disability case came under review last May. I can’t do this. I can’t not do this. I can’t handle more migraines, pain, sickness, digestion/assimilation problems, sleep problems and escalation of my symptoms and disease as well as entrapment in my body. I can’t kill myself. What is the matter with these people? Where is their consciousness and conscience? Our lives are at stake and we’re told, “You can’t make people study your disease.” I wrote this letter. It’s all that I can do. Words have stopped making sense at this point.

    Dear Mr. (caseworker’s name),

    I received your letter regarding my disability review. As is indicated in the paperwork that I filled out for you, I am bedridden with severe ME/CFS/SEID, my debilitating condition is exacerbated by verbal conversation and I have extensive cognitive, concentration and memory problems. I am unable to call you and maintain a phone conversation with you regarding disability matters. You’ll need to correspond with me in writing, through the mail and give me a lengthy time to reply.

    In your letter to me, I find your characterization of my documented medical conditions as “multiple allegations” perplexing. Last May, I was instructed to fill out the paperwork that I had been sent, which I did. It took me 3 weeks; pushing myself; which I’m not supposed to do! I answered the questions on the paperwork that was sent to me which involved listing my medically diagnosed conditions and answering questions regarding what I can and can’t do. I’ve done this in the past and I did it again for this review. My disease is documented throughout my medical, hospital, educational, work and disability records as well as in additional letters from various people. I am 50 years old and I have been sick for 33 years! There are no approved diagnostic tests or approved treatments for my disease, I don’t have thousands of dollars for experimental treatments, nor do I have the ability to travel around the country to a handful of specialty clinics and I haven’t made a miraculous recovery.

    If this case is beyond your understanding and ability, I’d like it passed onto someone with more experience dealing with chronic, incurable diseases that have no approved diagnostic tests, no approved treatments, decades of nearly non-existent government funding and research, as well as experience dealing with misleading and erroneous educational outreach from the government; which Elizabeth Unger, M.D., Ph.D., of the CDC admits is “actually harmful”, yet continues to promote. We live in a time of extraordinary advances in modern medicine, yet, decade after decade, after decade, after decade, patients go without appropriate care, research and treatments. Decade after decade, after decade, after decade, patients are harmed. Decade after decade, after decade, after decade, patients are discriminated against; even after the Institute of Medicine and P2P reports. I will no longer be harmed and discriminated against by a health care system; that through negligence and abuse, has already caused me to be bedridden. I’m doing the best that I can to survive this disease in hope that there will someday be treatments and that I’ll be able to live some of my life before it’s entirely over. If the new research indicating that patients may be dying 18 years younger than the general population holds up, I may not have much longer. First do no harm!

    My records document my disease. They are not, nor have they ever been “multiple allegations”.


    Laurie P_____

    • Laurie P says:

      This is the rest of my letter. I’m having trouble posting to the site (it kept saying it was a duplicate comment when no comment went through) and Jennie posted some of the letter for me but missed this part.

      Copies sent to:

      Cheryl A. Williams
      Director, Office of Medical Policy
      Social Security Administration
      6401 Security Blvd.
      Baltimore, MD 21235-6401

      Karen B. DeSalvo, M.D., M.P.H., M.Sc.
      Office of the Assistant Secretary for Health
      U.S. Department of Health & Human Services
      200 Independence Avenue, S.W.
      Room 715-G
      Washington, D.C. 20201

      Francis S. Collins, M.D., Ph.D.
      Director, NIH
      National Institutes of Health
      9000 Rockville Pike
      Bethesda, Maryland 20892

      Vicky Holets Whittemore, Ph.D.
      Neuroscience Center, Room 2133
      6001 Executive Blvd MSC 9527
      Bethesda, MD 20892

      Elizabeth Unger, M.D., Ph.D.
      Branch Chief, Chronic Viral Disease
      Centers for Disease Control and Prevention
      1600 Clifton Road
      Atlanta, GA 30329

      Congressman Jim McGovern
      438 Cannon HOB
      Washington, DC 20515

      Senator Elizabeth Warren
      1550 Main Street
      Suite 406
      Springfield, MA 01103

      Carol Head
      President and CEO
      Solve ME/CFS Initiative
      5455 Wilshire Blvd, Ste 806
      Los Angeles, CA 90036-0007

      Linda Tannenbaum
      President and CEO
      Open Medicine Foundation CEO/President
      29302 Laro Drive
      Agoura Hills, CA 91301

      At the bottom of the letter is a picture which I wrote the following caption for:

      San Francisco protest, as part of the first world-wide Millions Missing protests, May 2016.
      Linda Tannenbaum, President and CEO of the Open Medicine Foundation, speaking.
      Carol Head, President and CEO of the Solve ME/CFS Initiate, to Linda Tannenbaum’s right.

      Also, prominently in this picture is the gravestone poster that says:

      Here Lie
      1-2.5 Million Americans with ME/CFS…

      By 30+ YEARS OF

      HHS – CDC – NIH – FDA – AHRQ


      Here is a link to the picture:

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