Letter to NIH: End the Insult


An American who has suffered with ME/CFS for more than 38 years, who is mostly bed-bound, wrote this pointed letter to the National Institute of Health (NIH).

Francis Collins, M.D., is the director of NIH; and Walter Koroshetz, M.D. is the director of the National Institute of Neurological Disorders and Stroke (NINDS) at the NIH. 

Dear Dr. Collins and Dr. Koroshetz,

Below is a recent photograph of 23-year-old Tom Camenzind. He is dying of ME/CFS. A few short years ago he was an active young man, a lifelong straight-A student and sophomore in Stanford University’s Computer Sciences program.

Since Tom became ill with ME/CFS in March of 2014, NIH’s deliberate inaction and the absence of any FDA-approved treatment for ME/CFS has rendered Tom completely bedridden. Tom has become so severely ill with untreated ME/CFS that he is now unable to speak, eat, sit up, bathe himself, brush his teeth, read, or even get to the restroom. He cannot tolerate any light or sound. He has not been able to open his eyes for months due to neuroinflammation. As of February 2017, Tom has been hospitalized for more than 36 days with a PICC line and feeding tube.

The recent NIH ME/CFS RFA funding amounts are grossly inadequate: three research grants per year at $1.2 million each is shamefully low. Without adequate NIH investment in research, investigators cannot get to the “answers” to which NIH often refers. This is simple cause and effect: As long as NIH continues to offer grossly inadequate research funding, we will never have answers about and solutions for ME/CFS.

Please do not continue to repeat NIH’s meaningless trope about NIH grant approval rates being at 12%. This is baseless and insulting spin that people with ME, our families, caregivers, researchers and clinicians do not deserve. The ME/CFS community knows that NIH can do more, but has so far refused to do so. NIH refuses to act with urgency after more than thirty years of knowing about this disease, and after calls for urgent action in the 2014 P2P and 2015 NAM/IOM reports.

In the February 1, 2017 NINDS telebriefing Ron Davis, PhD, Director of the Stanford Genome Technology Center and father of very severely ill ME/CFS patient Whitney Dafoe said,

“I’m a little worried about the amount of money being put up at the beginning. I’m pretty confident that I could use ten times that amount of money just in our own group of people that we put together that could very effectively do good research with that amount of money. Of course we’ll do the best we can with the amount that we get.

The photograph below is what NIH murder-by-deliberate-neglect looks like (to borrow the phrase spoken by a commenter in the February 1, 2017 NINDS Telebriefing). Please look at it carefully. What you cannot see is what Tom’s suffering is doing to his brave and loving family. You cannot feel everyone’s suffering and utter despair.

It is not too late for NIH to begin to treat people with ME/CFS with humanity and dignity. So far we still wait for this to even begin. Please – increase funding now before more of us die. End our suffering with appropriate levels of NIH investment in ME/CFS research – commensurate with the burden of the disease. Place ME/CFS in an Institute. Stop giving this community bureaucratic excuses.

I have had ME/CFS for more than 38 years, if not longer. NIH inaction has robbed me of nearly everything. I am home- and mostly bed-bound. If either of you have any humanity at all, my family and I beg you to act with urgency now, not later. Not next year. Not in five years. NIH’s stubborn inaction continues to cost us and our families our lives, and cause our immense suffering and ultimately, our death.

 


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21 comments on “Letter to NIH: End the Insult
  1. Laurie P says:

    Thank you very much for writing and sharing this excellent letter.

  2. Cindy says:

    Absolutely brilliant and accurate! What is the best way for us to support this letter? It needs to be drilled in Collins & Koroschetz’s skulls (and whoever and whatever is impeding the truth of this disease being discovered)!

  3. Cindy Downey says:

    This situation is heartbreaking! And, there are millions around the world! From one Cindy to another, thank you for saying: ” and whoever and whatever is impeding the truth of this disease being discovered!”

    Could whatever is impeding progress be a collegial relationship between government agencies, and big business? For example, government health care departments and the disability insurance industry.

    Research has been done on the long-standing symbiotic relationship between Health Canada and the pharmaceutical industry: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3999539/ Apparently, Health Canada does not view the pharmaceutical industry in an adversarial role, but rather as colleagues.
    Could this be the same with the disability insurance industry? We don’t have to go far to see that industry lobbying of government works.

  4. Cindy says:

    BINGO, Cindy!

  5. Kathryn says:

    With the greatest of respect to the person who took the time and precious energy to write the letter, I hate to say it, but I don’t see how this letter is any different from any of the other letters or testimonies given to the NIH over the last 10-15-20 years, so I regret to say I don’t think it will make any difference.

    What will? I’m not sure, but I believe that we won’t get the attention and respect we need until a courageous and beloved musician, movie or television star, or athlete comes out of the ME/CFS closet, and testifies before Congress on our behalf. And as harsh as this may sound, if said ‘star’ is on a stretcher, or near death, that would probably double the funding than if the celebrity was moderately ill or improved enough to ‘not look sick’.

    I also think it’s a huge mistake to expect any help from pharmaceutical companies, as Davis’ research is confirming what others have found in the past, that healing and improvement will primarily with mitochondrial-related and other supportive nutritional interventions, and not drugs.

    But we DO need his and others research to be funded in order to find or confirm that those are the answers we need.

    1. Cindy says:

      Kathryn,

      Perhaps I missed out on Dr Davis’s research that indicates mitochondrial-related and other supportive nutritional interventions will be found to be helpful in treating ME, and not drugs. From my personal experience I have a hard time believing that medications will not also be a factor, and I believe big pharma will eventually become interested in ME. Remember that there are millions of people who have had ME for years and even decades; for those of us in this position, other autoimmune diseases have developed, and, sadly, prescription drugs become a necessity.

      I agree with your point about an ME closet “celebrity” coming out, and the tremendous impact it would have. I was struck watching the recent Oscars when Michael J Fox received an outpouring of support, respect, and a standing ovation from his colleagues; he has garnered tremendous respect for outing himself with Parkinson’s at a young age, and becoming a fearless advocate through his Foundation.

      If one of our closeted ME celebrities would realize that by coming out and advocating for ME, that he/she might receive similar respect and appreciation, perhaps someone would. That is why this powerful letter to the NIH is vitally important. All of our testimonies, letters, calls, meetings, documentaries, protests, Jen Brea’s TED Talk, etc., are chipping away at the stigma surrounding ME — and who knows what article/youtube clip, etc., will be the inspiration to give that person the courage to speak out.

      1. Kelly says:

        Hi Cindy,

        I think you’ll find that most of the people who are recovering or improving are doing so by trying to address these mitochondrial issues and also the immune dysfunction by many different methods, but primarily through nutritional supplements including high-dose probiotics (making sure to choose strains that help rebalance the innate/humoral immune system and don’t worsen food intolerances), and things like methylcobalamin (one of the things that helped the late Jodi Bassett, whose ME had improved greatly before she developed breast cancer, and a variety of other interventions. Yes, sometimes antibiotics and antifungals…and antivirals can be helpful, but both Davis and Naviaux found that many drugs may make things worse precisely because they interfere with mitochondrial function.

        You can find their comments here:

        http://naviauxlab.ucsd.edu/wp-content/uploads/2016/09/Metabolomics-QA-for-CFS-v12.pdf

        Yes, we need a ‘Michael J. Fox’. Someone beloved, highly regarded and very famous. That would be a game changer.

  6. Cindy Downey says:

    Hi Cindy,

    Thanks! Sociology 101!!!

    Science isn’t that slow…i.e. virtually no progress whatsoever, in 30 years! The log jam is elsewhere.
    I used to believe governments were diligently working on ME; I even have a decades old letter from NIH stating that, and a 2016 letter from Health Canada saying the same thing. Decades ago, a physician told me: “we’re just waiting for a cure.” He believed governments were working on this, so I believed it too.

    I think the majority of us are too sick to dig any deeper than the surface. We assume governments are going about the usual efforts for ME, as they do for other diseases: appropriate funding commensurate with severity, impact, and numbers, drug trials, physician training etc. It is shocking when we find out that’s not the case. Not the case at all. It’s also shocking when government officials portray this lack of action, or indeed negative action (“psychological studies”) as “look what we’re doing for you!”

    I can’t recall which recent blog basically said – keep informing, keep writing, keep spreading the word. We do see awareness building. I hope 2017 will bring much, much more progress!

    1. Cindy Shepler says:

      Cindy, for a long time I felt as you did — governments were diligently working on a cure and that they just hadn’t had a medical breakthrough…..It was shocking to find out it wasn’t the case.

  7. Mark Camenzind says:

    For those who are not too ill, or for well advocates, it is not that hard to meet with your congressional reps when in town, raise their awareness and get their support. If we have 1 million ill with ME is USA and even 0.1% = 1000 people, met with their reps, senators, we might get support from most of them, leading to more awareness, more pressure on HHS/NIH/CDC and more rational funding. If people can get support from NOW, AAUW, Rotaries, other groups, could also lead to more philanthropy that could fill the gap due to gross Federal discrimination against M.E./CFS
    Please read the excellent article by Mary Dimmock, Arthur Mirin and Leonard Jason and share with your officials to get support, since it shows clear gross discrimination against ME, the most discriminated against major chronic disease, and Govt is not allowed to discriminate:

    https://oatext.com/Estimating-the-disease-burden-of-MECFS-in-the-United-States-and-its-relation-to-research-funding.php

    Show also to any Philanthropist you know or might be able to meet, since it shows that due to gross Federal neglect, the philanthropist could make a dramatic difference for 20 million worldwide (Gates, Zuckerberg, Sean Parker, Warren Buffett….)

    1. Cindy says:

      Working hard all over the country, Mark. Sending my best wishes to Tom. You and your family are in my daily thoughts and a constant motivation to keep the advocacy pressure on, at every level, in every city and state. Please keep us posted on how Tom’s doing.

  8. Colleen Boles says:

    After 2 years sitting on a waiting list I was finally to get into the BC Women’s Complex Chronic Diseases Program. After an hour and a half visit with an Internal Medicine specialist, answering questions to 24 pages of ticky boxes he was able to confirm what I already knew – I have CFS/Fibromyalgia/CSS. Although grateful for the validation and the referrals to many supports, ie. Naturopath, physiotherapist, nutitionist etc., I was deeply disappointed that the hospital was not involved in any research regarding CFS/FMS/CSS or innovative medical protocols. I got sick 4 years ago after a severe viral infection and a diagnosis of PTSD. Although it appears the NIH is beginning to dip its toe into the proverbial research waters re. CFS/FMS I can’t help but wonder how the current political situation in the US could impact that. I’d be willing to become an activist for research here in Canada (on my good days anyway) if I knew there were others to connect with and if I knew where and or who to start with.

    1. Hi Colleen,
      #MillionsMissing Canada is doing a lot of great work towards advocacy. They have managed to get a meeting with the federal health minister to discuss issues of biomedical research: http://www.meaction.net/2017/02/08/canada-uses-bird-dogging-tactics-to-force-meeting-with-health-minister/

      Check out their Facebook where you can send a message: https://www.facebook.com/MillionsMissingCanada/

      Scott Simpson is leading a lot of the activism, and is a great place to reach out to. You can send him a message via Facebook.

  9. Cindy Downey says:

    Hi Colleen,

    Thank you very much for your comments on Vancouver’s Complex Chronic Disease Program. The lack of real, and meaningful assistance is disappointing, but I have suspected it would be, given media reports, and decades of experience with ME. At least the clinic seems to be able to confirm people’s diagnoses. This hopefully legitimizes one’s diagnosis at least for the GP. But what then?

    I don’t see this lack of meaningful assistance as the fault of the clinic. The problem, as we know, is enormous. Governments, including the BC government need to do much more, and not merely offer a “Band-Aid” solution. There are, at rough estimate, 50,000 British Columbians with ME. This one clinic cannot hope to personally assist all these citizens. Add in another 50,000 or more with Fibromyalgia, and many, many more with Chronic Lyme Disease, and I hope it becomes clear to even our BC government, that expecting this clinic to provide individual help in a timely manner to over 100,000 very ill citizens is definitely not happening.

    As someone who has had ME for over 3 decades, and has beaten the bushes flat as regards treatments, and lots of testing, this clinic would offer me, and many like me little if any assistance. And, it seems to be assumed persons with ME are made of money. Or, is the BC government covering the costs of consults, tests and treatments with the naturopathic doctor, physiotherapist, and nutritionist the clinic referred you to? I say this, of course jokingly, as I know the costs won’t be covered.

    Presumably the clinic is referring persons with ME to holistic practitioners who are up to date with the mainstream scientific discoveries about ME. It would be very helpful if this clinic would post a suggestion list of holistic practitioners who are up to date on ME. The rest of us who cannot afford to travel to this clinic, or who can’t wait two years to see someone there, could perhaps get help locally.

    And, how about training all provincially regulated health care practitioners about ME; using the Canadian Consensus Criteria of course. Regardless of this clinic having been in operation for a few years now, many health care providers are very lacking in knowledge about ME. This is the polite way of saying some of them can be very nasty indeed!

    I know all the holistic/naturopathic practitioners I have seen were not up to date when I consulted them. Even very recently, none of them have known ME affects the brain, immune, endocrine, and digestive systems etc. Just as with mainstream medicine, holistic practitioners trivialize ME, because it is also called “Chronic Fatigue Syndrome”. Many of the naturopathic doctors I have seen focus on the concepts adrenal fatigue, and/or chronic candidiasis. I know one of these doctors was shocked to learn that ME affects the neurological system. He originally told me I have adrenal fatigue, and assured me a herbal concoction would cure me. The assistance I have received from alternative practitioners has been insubstantial, and in some cases permanently harmful. The costs for this “assistance” have been very substantial.

    The BC government could do a lot more to help its citizens with ME. There is a provincial election this May. If anyone can, please write to your MLA, and the Premier, Christy Clark, and the Provincial Health Minister, Terry Lake about your concerns.

    1. Kathryn says:

      “The assistance I have received from alternative practitioners has been insubstantial, and in some cases permanently harmful.”

      I’d be curious to know which naturopathic treatments caused you permanent harm. I’m certainly not questioning your integrity, but am just curious. In my experience and those I’ve read of, the harm from pharmaceutical drugs far outweigh those of natural remedies. Almost all drugs advertisements here in the USA actually list ‘death’ as a side effect!

      Also you mentioned that docs you had seen weren’t aware of all the aspects of ME. I don’t think they can be expected to, even ME docs have a lot to keep up with. And did you know that even something as over-diagnosed as candida can indeed have severe neurological consequences?

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2438560/

      I used to laugh when people mentioned candida. That is until I read the study above.

      p.s. sorry I didn’t see your earlier reply, but I agree with what Kelly said above.

    2. Elaine says:

      Just a note to say that all of the referrals from The Complex Chronic Disease program are to practitioners who work as a part of a clinic team. All services are covered, including naturopath, acupunture, counselling, etc.

  10. Cindy Downey says:

    Request of Colleen Boles,

    Would you mind if I quoted your example posted here, in correspondence I hope to send to politicians re the ME crisis?

    Thanks so much again for telling us about your experience with the clinic in Vancouver.

  11. Mary Gelpi says:

    Hey friends,
    Wondering if Tom’s family would be ok for me to share this story on the wall of the international petition asking the NIH for drastically higher research funding. I obviously won’t post anything until I hear back. But I think the more we share, and the more platforms on which we share, the better our chances are to be heard. I think the goal has to be that we get so loud, so constant, becomes such a prickly thorn in their asses, that adequately funding the disease will become easier than actively neglecting it. Please let me know if this is something I can share (it would be sent via email to everyone who signed the petition–now more than 40,000
    People) Thanks for your time and continuing to make noise.
    Mary

    https://www.change.org/p/increase-research-funding-for-me-cfs

  12. Cindy Downey says:

    Hi Kathryn,

    Thank you for your reply as above. My notes above, are about my own personal experience with alternative practitioners; very well qualified alternative practitioners with degrees, MDs, Ph.Ds, etc.

    I apologize for the confusion re alternative practitioners, and “permanent harm”. I have seen a broad range of several well qualified alternative practitioners, including, but not restricted to naturopathic doctors, holistic MDs, Ph.Ds, and alternative dentists, I can say that it was not naturopathic doctors, nor natural supplements that caused me permanent harm.

    I agree, supplements can be helpful, and I also agree, much harm can sometimes come from pharmaceuticals.

    And, what I did say was that none of the holistic/naturopathic/alternative practitioners I saw were up to date about ME when I saw them, not that they didn’t know everything about ME. We of course, cannot expect anyone to know everything about ME. None of them seemed to be aware of the scientific discoveries about ME; even the discoveries of 25 to 50 years ago, as Dr. Byron Hyde’s 1992 book The Clinical and Scientific Evidence of Myalgic Encephalomyelitis Chronic Fatigue Syndrome so thoroughly documents.

    None of the alternative practitioners I saw appeared to view ME as a very serious disease, and none of them appeared to know it is a neuro-immune-endocrine disease. I have seen some of them express shock when they find out ME affects the neurological and immune systems.

    I think we need both alternative and allopathic fields to cross pollinate. That would hopefully serve us best. The gap between what the Canadian Consensus Criteria tells us ME is, and what alternative practitioners I have seen say ME is, is quite broad. For example, in my experience, where the CCC, and its authors would say the impedance cardiograph test reveals circulatory/orthostatic/cardiovascular problems, an alternative practitioner I have seen said it’s adrenal fatigue, and to take a herbal supplement. Having repeatedly had this form of alternative treatment, and dozens of others for over 2 decades, with little to show for it, has taught me that no one discipline has all the answers for ME.

  13. Cindy Downey says:

    Thank you Elaine for your clarification re what costs are covered as a patient of the Chronic Complex Disease Program (CCDP) in Vancouver, BC. That’s great. The Clinic is a good resource. But having this ONE clinic for all of BC should not get the government off the hook. There are still the issues of: a 2 year waiting list, as per current CCDP website info; costs of travel for at least one visit; and what do PWME etc. do in the interim? The CCDP website advises their staff work with referring physicians when their patients are in the program. What about while these very ill people are waiting?

    As well, education of medical personnel about ME is very slow to non-existent, given the appalling comments and actions I noted less than a year ago in a BC hospital. These negative comments, attitudes, and actions were not isolated to one person. Medical personnel in 3 different departments expressed negative opinions about PWME. Educating a few physicians at a time, whose patients are attending the CCDP is an exceedingly slow process, and I would guess very time consuming for the staff of the Clinic. Governments everywhere could organize a much more efficient and broad reaching approach. And, it’s not only doctors who need to learn about the reality and severity of ME.

    Thank you again for your clarification. It’s good to know all the referral costs are covered, while in the program. However, it is important governments everywhere understand that providing one small resource for a large catchment area barely scratches the surface.

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