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

|

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.

The author during healthier times, at the Continental Divide, Colorado, July 2011
The author during healthier times, at the Continental Divide, Colorado, July 2011

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.

The National Institutes of Health Clinical Center, Bethesda, Md. So much money in this photo; any for M.E.?
The National Institutes of Health Clinical Center, Bethesda, Md. So much money in this photo; any for M.E.?

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.

The cardio-pulmonary exercise test; the author, way skinnier than he should be, pedaled for eight whole minutes before collapsing.
The cardio-pulmonary exercise test, Feb. 2015. The author, 30 pounds skinnier than he should be, pedaled for eight whole minutes before collapsing.

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

 

Share Button

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

  1. I loved this comment – heartily agree with it!

    “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.”

    and this one”:

    “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.”

    and this one:

    “Exercise for M.E. patients is more damaging than sugar is to a person with diabetes.”

    “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. ”

    You have got the touch. I hope you keep writing 🙂

  2. Having just passed my 21st sickiversary, I appreciate this excellent letter.

    I encourage people to paste the full text of this blog into an email sent to Collins and cc’d to other powerful figures. Here are addresses:

    TO: [email protected], [email protected]
    CC: [email protected], [email protected], [email protected],
    AND your 3 congressional representatives

  3. Well, the good Dr. Collins did read my letter and sent me a response an hour ago. He asked me to keep it private, which is fair. But I will say that his words conveyed to me that he does understand how serious the illness can be, and he made a pledge that gives me cautious hope that change may be afoot at NIH. We’ll see…

  4. I followed Rebecca’s posted advice and contacted my congressional reps and also emailed the folks at NIH,HHS, and the CDC as she detailed. I hope you can find the energy to do the same.

  5. Brian, great letter. I hope the medical community listens and that you feel better soon.

  6. Brian, wonderful letter. I am approaching my 2nd illiversary, and am a very similar case to yours. Thanks for getting through to Dr. Collins.

  7. Brian,

    Great letter and important message. It wasn’t long ago that we were both honing our craft as writers at GBSW and in the class of Mr. Moeller.

    Keep writing, keep telling your story, and keep advocating for others. You have a great gift to make a difference for others.

    Thanks.

    Greg

  8. Greg – He was a great high school writing teacher, eh? I think the most valuable lesson I learned from Mr. Moeller (other than how to write effectively) is that writing for third-rate porn mags can be a lucrative side gig.

  9. thank you for this. i’m 17 yrs disabled (now bedridden), just turned 41. i’d recently completed a degree in biochem when i got sick–pre-med!

    the fact that he responded–oh, so glad to hear that. we need hope.

  10. Thank you, Brian, for the remarkable letter. It is passionate, data-driven, powerful, insightful and descriptive of what me/cfs is doing to so many lives. I appreciate what it took for you to write it and for your ability to articulate what others experience.

  11. Thanks so much for this letter. It illustrates very well how serious this illness is and how ridiculous it is that even scientists with stellar track records who apply for grants receives no research funding. A whole genetics division at the NIH likely exists on account of the work that Dr. Ron Davis did – the least they can do is fund his ME/CFS research. This illness costs our country tens of millions per year in disability payments, millions more in lost productivity, and an innumerable sum in suffering and misery. If the government is as serious about ratcheting up medical research at NIH as a way to reduce long term health care costs as they say, ME/CFS should be the poster child illness for this program.

  12. Brian, your “open letter” to Dr. Collins was impressive. Thank you for sharing your personal story and your insightful comments about the lack of funding by NIH.

    I have contacted my two Senators and Representative and shared your “open letter” with them.

    Would the Washington Post or some other national newspaper be willing to publish your letter? An expanded readership would benefit the ME patient /caregiver /advocate community.

    The fact that Dr. Collins contacted you regarding the letter is remarkable. I hope that you can maintain a dialogue with him.

    Although you state that $250 million in ME research funding is “…a figure commensurate with the burden of disease,” you also state that it is “… in all likelihood politically infeasible….”

    Why do you think it is “politically infeasible?”

    Your reference to the “…huge burden M.E. places on society-tens of billions in medical expenses, lost productivity, and missing tax revenue each year,” I believe justifies an increase in NIH funding to an amount much greater than $10 to $20 million per year.

    Parity in NIH research funding with other serious diseases is essential to finding a cure for ME.

  13. I read this recently republished piece on ME in today’s Post, and just wanted to tell you that I had ME pretty seriously for 4.5 years, and experienced what appears to be a full recovery. I have no idea how or why it happened, the syndrome just gradually went into remission over a period of some months. So there is some hope, however discouraging your current circumstances. The stuff you hear about how if you’re not better within a couple of years, it won’t happen is not true in in my experience. Take care of yourself, sir.

  14. As a community we should not be satisfied with a private response from Dr. Collins to Brian. If the head of the NIH cannot give a frank response in candor to all Americans with this illness he might as well just be silent as far as I am concerned. I got sick in July of 1995. I have paid income taxes like many other Americans and I expect accountability from the Federal government and it’s managers. If they claim to care and want to do right by our community let them show it in words and deeds.

  15. There is a lot of overlap between CFS and lyme disease symptoms. Have you ever consulted a lyme literate doctor? Lyme blood tests are frequently inconclusive and diagnosis needs to be done by a doctor conversant in diagnosing and treating lyme disease. My daughter was diagnosed at Johns Hopkins Hospital in 2000 with chronic fatigue and fibromyalgia, but fortunately recieved a lyme disease diagnosis 4 years ago and has had dramatic improvements in her health with long term antibiotic treatment.

  16. To Brian: go to the website, lymediseaseassociation.org. Read some of the patient/victims stories regarding their infestation of Tick Borne diseases. Another site is, ILIADS. You mentioned that the year before you got sick, you went on a hiking trip in the Rockies. There are millions of ticks in the Rockies. The worst ones are the tiny babies. They are the size of a small pepper flake. If you had one on your scalp, you probably didn’t notice it. Yes, ticks carry more than just Lyme disease. Some ticks carry the co infections, Babesia, Bartonella, RMS, HGE, Tularemia and other infections. Some of these diseases have varying strains, for which there are no accurate tests. The standard tests for Lyme are not 100% accurate, not even 60% accurate. You need to see a “Lyme literate doctor”. Who can clinically diagnosed you as per your history and symptoms? The LDA.org website offers doctor referrals by state. You need to see a doctor who treats the tick born infections as per the Lyme community guidelines. Those doctors do not practice at NIH, Hopkins, Mayo or any other world renowed facility. Hopefully the LDA search referral will give you the name of a doctor in Hawaii. There are plenty in California, and the East Coast. Your story is very familiar. I understand your frustration. 16 years ago, I got sick. On the days that I had the energy to get out of bed, I went “doctor hopping”. 24 doctors in 2 years. Every doctor had a symptom pill for me, multiple diagnosis, most included, chemical imbalance of the brain. My routine blood work was always normal, thus none of them saw any reason to do any special tests. When I finally went to a Lyme literate doctor, my tests for Lyme were negative. But, he made a clinical diagnosis and started treatment. I was very responsive and later tested positive for multiple infections. I have chronic infections and will be on a maintenance protocol for many years. Hopefully a cure antibiotic will be found. The lyme bacteria is a spirochete. So far, I am pretty sure, there are no gene therapies, and or vaccines that kill mutating spirochetes. My best to you, Jane

  17. It’s a shame that CFS/ME sufferers can’t pick a week in the fall to flood Francis Collins with personalized letters of how the disease has disrailed their lives. Imagine him receiving 25,000 letters in one week, all from CFS/ME patients asking for an increase in funding.

  18. Great to see that you have received a response from Dr.Collins. Thank you for writing and stirring up the pot – this patient group deserves so much better.

  19. Brian, there is something we are working on that could potentially help. Let me know. You should be able to get my e-mail address from the comment headers. If not, just ask.

  20. Thanks to Rebecca Skloot for chiming in! Floyd Skloot has dealt with severe neurological ME/CFS in an amazing fashion and his books are well worth reading…:)

  21. It’s been 40 yrs of cfs for me,along with many motorbike mishaps,bouts of CO poisoning [while working as a mechanic],RhArt …drugs are never the fix [sic].What does help is transdermal mg chloride,CC oil,baking soda,ascorbic acid,b complex ,d-ribose,q-10,wobenzym, Homeopathics,PEMF & Scalar therapy,eliminating wireless emf exposure,no dairy ever again…*these* are what get the cellular pump working…not those kidney&liver destroying pHarmaceuticals.

  22. Brian – your story is so familiar. I am glad you called it ME because CFS seems to trivialize what we put up with! I saw doctors on 2 continents when the flu going around nearly 30 years knocked me for a loop. I went from a Type A to a dud and only managed to continue working by taking a nap on my lunch hour, falling asleep arriving home and then waking in the middle of the night. Even referred to a psychiatrist was a waste of time. I was finally referred to a virology researcher in the UK who said we either got better, worse or stayed the same. I was one of the lucky ones who got marginally better by following his advice of not pushing myself and admitting when I needed to stop and rest. (And I found a minimum of 10 hours asleep, mostly in naps, helped me improve to a certain point.) While I was assured it wasn’t contagious, my husband developed the same symptoms a year later (that’s taking sharing a bit too far) and during that time one of his cousins was also affected and has been an invalid since; her husband divorced her and she was forced to move in with her retired parents to care for her. ( Thirty years ago, there were a number of publications in the UK addressing ME and one said ME was a non-fatal AIDS and that best described it). ME is not only debilitating but the scorn with which we are met by most of the medical community is so discouraging. Even my sister, who is a nurse, never believed ME is real. Unfortunately, CDC elected to put all their effort into HIV and ME and Hep-C (which is killing my son) have been ignored. Your letter was inspiring and I am hoping you have started something that will finally result in taking this syndrome seriously.

  23. I was 10 when I first had an outbreak of a mysterious illness that has recurred throughout my life, finally refusing to let go when I was 42. Now, at 68, I still struggle every day to do what others do without thinking twice. I do remember the “remission periods,” however, and how great it was to be able to run the trail up from the Lower Yellowstone Falls and beat both my boys! There are no remissions, now, just moments when I don’t feel so bad. UCLA told me I was the poster girl for Chronic Fatigue Syndrome. Scripps told me I had Fibromyalgia. I really don’t care what it’s called; I just wish someone would see the need to put some money into studying why this happens and what can be done about it. Every time I am hit by a new wrinkle like collagenous colitis, severe asthma, edema, etc, I am told that I should be glad that at least there is a name for the problem–we know what it is. Whoopee, the next thing they say is that there is no cure and the drugs that might help temporarily have nasty side effects. Thanks for writing your article, Brian. I hope someone is listening.

  24. Brian,
    I had similar symptoms and thought my life was over. I developed severe chemical sensitivity on top of my other problems and couldn’t be around anyone. My husband said I was crazy and left me and my son and I had to move in with my parents (at age 47). I dug and dug until I found the help I needed. In my case, I had a bulls-eye rash (from some sort of bite) back in 1978 when I was 11 years old. (By the way, you do NOT have to have the bulls-eye rash to have Lyme). I had all the other symptoms you mentioned too. I have chronic Lyme disease, which started out about 2 weeks after the bite with a very high fever, pains in my joints and severe fatigue. Back then, they didn’t know anything about what was happening to me (even now, many doctors do not). I agree with the other comment about you backpacking and possibly being bitten. The Lyme test are not accurate; a Lyme literate medical doctor has to look at the test results in conjunction with your symptoms. Please do yourself a favor and look into it. Many people are misdiagnosed. I was diagnosed with CFS and Fibromyaglia. I am receiving IV nutritional therapy, ozone therapy (called Major Auto Hemotherapy) and various other homeopathic treatments that have turned my life around. Whether it is ME, Lyme, CFS, viruses — major auto hemotherapy works. My situation was further complicated by a toxic mold exposure. I am about 80% better and continuing to get better everyday. I have seen other patients like me make remarkable recoveries as well. Please, please, please keep fighting and research Major Auto Hemotherapy. If I can help you in any way, please email me.

Comments are closed.

Categorized in: Miscellaneous