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Dear Dr. Collins: I’m Disabled. Can the N.I.H. Spare a Few Dimes?

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This article originally appeared on The Last Word on Nothing. Reprinted with the kind permission of Brian Vastag.

By Brian Vastag, July 14, 2015
 
Three years ago, a sudden fever struck veteran science writer Brian Vastag on a blue-sky Wisconsin morning. He’s been sick ever since. Now cognitively and physically disabled, he lives on the island of Kauai. On Brian’s third “illiversary,” he presents an opportunity to National Institutes of Health Director Francis Collins.
 
Dear Dr. Collins,
 
You might recall the last time we spoke. It was January 2013, and I was working as a science reporter at The Washington Post. Your people arranged an early call for you to announce that the N.I.H. had decided to retire most of its research chimpanzees. We spoke for about 20 minutes, and I typed up a 600-word story. It wasn’t very good.
 
I was working from home that gray day because I had little choice. I was mostly bedbound then, seven months after a sudden fever had knocked me prostrate. My legs were so weak that climbing the stairs to my home office required pulling myself up the railing hand-over-hand. My brain was so sluggish I asked few questions of you. The ones I managed to croak out were poor, no doubt.
 
Too sick to work, I did anyway. I loved my job at the Post – not an easy gig to come by – and I was desperate to keep it. I had been following the research chimp story for a while, and I liked that the N.I.H. chose me to break your news.
 
I’ve long appreciated how the N.I.H. helps the world. My career began there in 1998, when Paul van Nevel hired me for a science writing fellowship at the National Cancer Institute. I count your communications director John Burklow among my mentors, and I was honored to write Paul’s obituary. That first boost of professional success propelled me to an exciting career.

Lately, though, my love for your august institution has been strained. You see, I’ve been felled by the most forlorn of orphan illnesses. The most accurate name for it is myalgic encephalomyelitis, which means “painful inflammation of the brain and spine.” (Yes, it is painful, and yes, there’s strong evidence of neuroinflammation.) At the N.I.H. and elsewhere, it is instead called chronic fatigue syndrome. That’s a terribly vague and dismissive moniker for so serious an illness, and one that needs to be retired. Fatigue is not the primary or most troubling symptom for most people with M.E.
 
In the past, you’ve shown a soft spot for certain orphan diseases. Well, the history of M.E. is akin to locking an entire orphanage in a cellar and bulldozing the house.
 
On the list of illnesses the N.I.H. studies, M.E. (listed as “M.E./C.F.S.”) is near the bottom in funding, ranked 231 out of 244. It received $5 million in 2014, less than hay fever, which cripples no one. That’s not enough money to equip a laboratory and run it for a year. This abject neglect – or sustained prejudice, or maybe both – stretches back a full three decades at the N.I.H. (For a detailed history of how this sad state came to be, read Hillary Johnson’s deeply-reported book Osler’s Web.)
 
No one has a good count of M.E. patients in the U.S. – the C.D.C. misspent funds earmarked for this purpose – but there’s plausible evidence that several hundred thousand people are disabled by it. That’s comparable to the burden of multiple sclerosis – the illness M.E. most closely resembles. N.I.H. funds $110 million in M.S. research each year, and a sustained government investment has been crucial in the development of a dozen F.D.A.-approved M.S. drugs. M.E. patients have no approved treatments.
 
But M.E. is finally emerging from the basement. Brand name institutions and big-time researchers now recognize the huge burden M.E. places on society – tens of billions in medical expenses, lost productivity, and missing tax revenue each year. Columbia University’s Ian Lipkin is searching for infectious triggers, and has reported severe immune problems in patients. Columbia received $150 million in N.I.H. grants in 2015; Lipkin’s operation gets a big chunk of that. But when the famous virus hunter applied for a trifling $1 million for M.E. research, the N.I.H. turned him down, twice. So spurned, Lipkin and colleague Mady Hornig recently resorted to eating habanero peppers to raise money.
 
Jarred Younger, at the University of Alabama-Birmingham, has a list of off-the-shelf drugs and supplements that can reduce neuroinflammation. They urgently need to be tested in patients. In Norway, a phase three clinical trial of the cancer drug Rituximab in M.E. holds great promise. In early trials, nearly two-thirds of patients improved after repeated doses of Rituximab, and a quarter went into full remission. Such promising results, if reported in cancer patients, would be trumpeted as a breakthrough. Additional studies to sort out which patients might benefit from this drug are urgently needed; the N.I.H Clinical Center would be a fantastic home for such trials. It’s unseemly to let a tiny Scandinavian country overtake the enormous U.S. of A. in this, or any, realm of medical research.
 
At Stanford University, prominent geneticist Ron Davis is searching for genetic risk factors. His investment is deeply personal, as his adult son – formerly a world-traveling photographer – is severely ill with M.E., and can no longer walk or talk.
 
When you peruse the recent M.E. literature, you’ll see a mix of young researchers and experienced lab leaders producing a string of insights into how the illness damages the immune system and the brain. Mutations in the gene MTHFR have been identified by the Open Medicine Foundation as a risk factor. Diagnostic biomarkers await validation. Promising treatments need to be tested in patients. And all of this has happened with little support from the N.I.H.
 
Patient advocates have called for $250 million in M.E. research funding, a figure commensurate with the burden of disease. This is a huge ask, and in all likelihood politically infeasible, so let me make a smaller one. A new N.I.H. program funded with as little as $10 million to $20 million per year would be absolutely transformative for the field – and for patients. Such a program would affirm the N.I.H.’s commitment to understanding the illness. It would draw more young researchers to studying M.E., and it would encourage further private funding. Such a commitment would also give patients – many housebound or bedbound for decades – hope that they’ll be healthy again. I challenge you to find another illness where such a small investment could make such a huge difference.
 
You now have broad support from the medical community to make this happen. Earlier this year, the Institute of Medicine made a strong call for a robust M.E. research program. And just last month, an N.I.H.-appointed panel urgently made the same recommendation. With the bipartisan 21st Century Cures Act poised to pass Congress – giving N.I.H. an extra $8.75 billion over five years – you could do so without pulling money from existing programs. At the same time, you could help things along by moving responsibility for M.E. from its long-term parking spot at the Office of Research on Women’s Health to one of the institutes that, you know, funds disease research.

A year before I fell ill, I backpacked Rocky Mountain National Park. My legs carried me up to the continental divide, where I sat on the edge of a precipice marveling at the peaks around me. At nearly 13,000 feet above sea level, the thin air addled my thinking – a feeling I now live with every moment, as if someone poured molasses into my ear, gumming up all trillion synapses. It’s a terrible way to go through life, especially so for someone who not so long ago made a good living with his brain.
 
Here in Hawaii, there’s a smaller mountain behind my yard. It’s called Sleeping Giant, and the giant’s forehead juts less than 500 feet above my back patio. A well-trod trail carries people up there for sweeping views down the volcanic slope and across the endless Pacific. Oh how I would love to drink in that view. But I may as well be gazing up at K2; a summit attempt would be supremely unwise, as a sophisticated exercise test found that I suffer from severe metabolic, cardiac, and pulmonary dysfunction. Exercise for M.E. patients is more damaging than sugar is to a person with diabetes.
 
At 43, my productive life may well be over. There’s a good chance I have hiked my last trail. The nation’s coffers lose some $25,000 in tax revenue each year I remain disabled, and I will soon know if Social Security Disability Insurance will start coming my way. I don’t enjoy being a drain on society, and neither do any of the other M.E. patients I know. And yet, with the ever-growing research interest in M.E., I have hope that someday I’ll be able to stand for more than a few minutes, walk for more than a block or two, maybe even resume my career. (It took me four days, with frequent breaks, to write this letter…that’s a bit slow for newspaper work.)
 
The causes of M.E. will eventually be discovered, treatments will be found, and patients will enjoy long-term remissions. As the leader of our nation’s medical research enterprise, you have a decision to make – do you want the N.I.H. to be part of these solutions, or will the nation’s medical research agency continue to be part of the problem? At the very least, you could ensure Dr. Lipkin doesn’t have to scorch his intestinal tract again just to drum up a few research dollars.
 
Sincerely,
 
Brian Vastag

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13 thoughts on “Dear Dr. Collins: I’m Disabled. Can the N.I.H. Spare a Few Dimes?”

  1. siebertesther says:

    Thank you for your letter to Dr. Collins! I’m sorry to hear you’ve recently become ill and I hope you know that now is your best chance to recover from ME/CFS and will not push yourself at all to allow that possibility to happen to you. A certain percentage of people as I understand it get well in the early years if they essentially pull the plug and rest.

    Those of us who have had our lives ruined by this illness do not share your patient approach with the NIH though it might be more effective politically. Nor a goal of just $10-20 million dollars for the coming year. I believe Dr. Montoya at Stanford threw out the figure of $200 million. Many of us feel that we deserve massive compensatory funding to make up for the neglect and corruption we’ve suffered from the NIH.

    I’ve been ill for 29 years and am now a senior. I have no hope of a treatment in time for me and have made my peace with my life as it is. Not that I don’t welcome any improvement in my condition that I can discover.

    But we have to think of the children, adolescents and young people getting sick now who are facing a life without an education, a career or a family if massive research efforts are not undertaken now. According to the IOM report, there are over 836,000 cases now and this may actually be over 2 million given how frequently ME/CFS goes undiagnosed. We need a dramatic increase in funding and a massive effort on the part of the NIH now. We’ve waited too long already…

  2. lorreann says:

    This was a very informative letter and explains a lot as to why those of us who remain crippled and sick feel little hope for our lives. Hopefully your letter won’t fall on deaf ears.

  3. mikiem says:

    Thinking conventionally, there’s not an awful lot most of us suffering this illness & similar can do to motivate anyone at the NIH. I could have spent weeks & not come close to Brian’s letter.

    But we can make it personal… I can’t think that there’s too many people in the world that wouldn’t be bothered if 10s of thousands of people wished them ill. Such a campaign doesn’t have to be truly nasty, being no more, no less than examples in TV ads, from politicians to political activists to the ASPCA.

    This is our life — This is the man responsible — Call, write, e-mail, fax you Congressional Reps Now. Or perhaps a Twitter campaign along the lines of “Ask Dr. Collins Why?”.

    Dr. Collins, why can’t I get out of bed today? Dr. Collins, why must I suffer unbearable pain? Did you sleep well Dr. Collins, because I couldn’t sleep at all thinking of you.

  4. cjdevries says:

    This is a fantastic letter. It’s important to speak up no matter how big the mountain seems to be between where we are now and the research being fully funded, or funded to the point where they can make some real headway. I have to believe that if the severity of this illness (the serious cases) was taken into account funding would be a lot different. Everyone the suffers this illness deserves respect, but the people who are most severely affected may deserve even more. I still can’t believe that with the seriousness of this condition it is not treated with more dignity. I have been through a lot with ME/CFS, and I have also been blessed with a lengthy period of remission. But, my nervous system and body will never be the same. Who knows if they will have effective treatments in the future? Probably not if the funding is not there. (One treatment that has been the most effective for me is qigong. I worked with a qigong master from China who helped me to about 80% health and back to a normal life when I never thought I would be productive again. There is some special energy work out there for those who are lucky enough to have the financial resources and connections.)

    1. cjdevries says:

      There are still many doctors who dismiss the condition. I recently went to a doctor who said Chronic Fatigue Syndrome wasn’t a diagnosis. I said the doctors at UCLA said it was. Patients have to find doctors who understand, otherwise the mountain they have to climb will feel even bigger.

    2. mikee831 says:

      Dr. Collins I want to let you know it is possible to recover from CFS/ME. I suffered with CFS for 20 years. The first 15 years no one knew what I had. I then saw a TV news clip about CFS about 1984. I knew that is what I had. I then had the blood test done for EBV as recommended in the news segment. My titers to EBV were extremely high. Of course no doctor could help me or was able to. In time I learned NIH was having a CFS study. I wrote NIH and became a part of several of their studies on CFS. Of course nothing they tried helped. My conclusion was there is no help from conventional medicine. In fact the non conventional doctors I had seen were also no help. I had no medical options. I decided to follow a strict diet and supplementation to try and rebuild my immune system and overall health. I tried to eliminate all sugar, refined product, and most grains except millet and oats. Lots of lean protein, veggies, raw nuts and seeds, plain yogurt and fresh fruit. My diet was one someone with hypoglycemia would follow.I was careful not to do more than I could recover from after a night’s sleep. Of course I often did too much. Big mistake. I was unable to exercise at first but did take very very short walks when able, floating on a tube in a pool was helpful, etc. Very light non streneous movement. Some physical activity can be helpful if started very very slowly. Your body will let you know what you can do and can’t. Don’t rush it. It took about 2 or 3 years but I did make a complete recovery. I was totally well for 20 years. I was working fulltime and going to the gym 4 times per week. I had a relapse over a year ago. I was pushing myself far beyond what I should have. I never though I would relapse. Once again I am trying to work my way back to health. I also wish there was a quick solution but I know of none. Hopefully I will again make a complete recovery.I am a senior citizen now and as we age one’s immune system, etc. I believe weakens so it probably will take longer. Patience and persistence is the key. Of course there are non traditional doctors who treat those with CFS/ME. Maybe one can help you. I know they can be expensive and may not help.

    3. mikee831 says:

      Dr. Collins I want to let you know it is possible to recover from CFS/ME. I suffered with CFS for 20 years. The first 15 years no one knew what I had. I then saw a TV news clip about CFS about 1984. I knew that is what I had. I then had the blood test done for EBV as recommended in the news segment. My titers to EBV were extremely high. Of course no doctor could help me or was able to. In time I learned NIH was having a CFS study. I wrote NIH and became a part of several of their studies on CFS. Of course nothing they tried helped. My conclusion was there is no help from conventional medicine. In fact the non conventional doctors I had seen were also no help. I had no medical options. I decided to follow a strict diet and supplementation to try and rebuild my immune system and overall health. I tried to eliminate all sugar, refined product, and most grains except millet and oats. Lots of lean protein, veggies, raw nuts and seeds, plain yogurt and fresh fruit. My diet was one someone with hypoglycemia would follow.I was careful not to do more than I could recover from after a night’s sleep. Of course I often did too much. Big mistake. I was unable to exercise at first but did take very very short walks when able, floating on a tube in a pool was helpful, etc. Very light non streneous movement. Some physical activity can be helpful if started very very slowly. Your body will let you know what you can do and can’t. Don’t rush it. It took about 2 or 3 years but I did make a complete recovery. I was totally well for 20 years. I was working fulltime and going to the gym 4 times per week. I had a relapse over a year ago. I was pushing myself far beyond what I should have. I never though I would relapse. Once again I am trying to work my way back to health. I also wish there was a quick solution but I know of none. Hopefully I will again make a complete recovery.I am a senior citizen now and as we age one’s immune system, etc. I believe weakens so it probably will take longer. Patience and persistence is the key. Of course there are non traditional doctors who treat those with CFS/ME. Maybe one can help you. I know they can be expensive and may not help.

    4. many turtles says:

      Your heart-felt letter touched my heart as I too have ME/CFIDS & Fibromyalgia. Your expression of the limitations of the illnesses, the degree to which it is understood (or not) and the amount of funding set aside for review, study and potential cures is not only accurate but demonstrates the lack of understanding and implications of these illnesses on the economy, loss of human resources/employment and independent lives of all involved. Thank you for your thoughtful, thought provoking and insightful letter. May you again find health, peace and a sense of accomplishment through your writings and living your life to the fullest as possible. Thank you, P.R.

  5. Deadinbed1 says:

    amazing writing for that amount of time that i couldn’t do in a decade! can’t keep a journal anymore because i can’t remember the day! great letter and i wish this letter could be everywhere out there for all to read. sort of force-read it on all important news, medical, etc! THANX & God Bless!!!

  6. Dollyonline says:

    I have been ill with Chronic Fatigue and Fibromyalgia since 1984. I have pretty well given up on the idea that a cure will come in my time early enough to help me but am praying it will come so it will help all those people who have just come down with it or will come down with it. Your letter brought tears to my eyes as it was so well written but so many letters have been well written and just went by the wayside. It is so depressing that we get forgotten and are left to suffer the indignity of people suggesting it is all in our heads and that we just don’t want to work. I loved my job but just couldn’t pull myself out of bed every morning in time to get to work on time plus I really wouldn’t have been in the best of condition to work with anyone never mind the handicapped children I worked with.
    Thank you for boosting my spirit with your fantastic letter…we can only hope and pray it doesn’t fall upon deaf ears.

  7. danat says:

    I’m so glad that the Washington Post Health section picked up this article. I hope that people will recognize that what he’s talking about is chronic fatigue and that it affects so many people so horribly.

  8. wick66 says:

    Thank you so very much for your thoughtful, considerate letter.
    I have found help for my ME/CFS by doing genetic testing and working through Dr Amy Yasko,PhD,ND and her supplements. I have severaly bad genes. I used 23and me re testing.

    I’ve also found the following very helpful: Mitochondria Ignite (or Healthy Aging): Vie Light (intranasal light therapy). Another option is WELLCELL.

    MAY WE ALL BE HELPED/HEALED.

  9. macrn says:

    I would suggest you have your doctors do a blood test for Bartonella which has been found to cause you symptoms. The only lab I know doing this test is Galaxy. I do not want to post my doctor’s name on such a public forum, but he is leading the way in research of tick-borne illnesses. I will email you directly with his name. Even tho’ he is located on the East Coast near Washington, DC I am aware of people traveling from all over the world to see him.

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