Brian Vastag to Dr. Francis Collins

Yesterday, an open letter from science writer Brian Vastag to Dr. Francis Collins (Director, NIH) flashed around the ME/CFS social media-sphere like lightning. Then it spread among Brian’s high profile colleagues, like Martin Enserink and Carl Zimmer. Brian’s letter is both personal and scientific, and he makes a very reasonable suggestion for how to increase ME/CFS funding. I’ve reprinted excerpts of the letter here with Brian’s permission, but please go read the entire original on The Last Word on Nothing.

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.

. . .

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.)

. . .

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.

. . .

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.

. . .

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.


Brian Vastag

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13 Responses to Brian Vastag to Dr. Francis Collins

  1. Sasha says:

    Thanks for posting this, Jennie. The full article is longer and I highly recommend that people read it. It’s the best piece of ME/CFS advocacy writing I’ve ever seen.

    It’s going gangbusters on Twitter, with a ton of major journalists retweeting it. Any of us on Twitter should do the same!

  2. Diane says:

    I hope Brian can get this letter published in the Washington Post, his former employer.

  3. floydguy says:

    I am generally cynical about advocates making much progress at NIH but when there are windows of opportunity like this one they should be exploited. I think forcing a decision as to what Institute (outside of NIMH!) and a firm commitment from the top (eg real accountability for making progress wherever it ends up at NIH) with expectations that progress be made in specific areas (neurology, immunology, genetics, metabolics, etc.) is a good place to start.

  4. Chris says:

    Thanks, Jennie, for hosting Brian’s great letter–it really does a great job of putting the case. Whether it will reach the interior of the head of NIH remains to be seen…. but if this doesn’t, one can realistically ask “what will?”

  5. billie moore says:

    Wonderful of you to print this, Jennie. Thank you. Here’s my favorite quote of the whole, full article, as Brian continues to address Dr. Collins.
    “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.”

    Maybe I am too close to this disease and the efforts to put it on the NIH map, for real, but I perceive, maybe incorrectly (I hope not) that momentum is building and documentation is accumulating which will make it harder and harder for the NIH to avoid raising the funding significantly. I do wish Brian had asked for over $100 million, however, not $10 million. With pressure, which we need to supply, there might even be a possibility of ME being given a proper home in the NINDS – neurological institute.

    I think this letter can be the basis of a mass mailing to Dr. Collins.

  6. Celia Harrison says:

    Thank you for letting us know about this letter. I’m in a flare up and missed this yesterday.

  7. PKKühl says:

    As always Jenni anythinh you do is GREtly Appreciated!!I dont know how you do what you do but you do and I Thank you, PKK

  8. PKKühl says:

    As always Jenni anything you do is GREATLY Appreciated!!I dont know how you do what you do but you do and I Thank you, PKK

  9. Jim Mills says:

    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.

  10. Sasha says:

    Brian’s letter was published in the Washington Post today.

    Thank you and congratulations, Brian!

  11. Kathy D. says:

    Very good letter, so glad it got into the Washington Post. That should help us a lot
    to have a well-written letter which is very heartfelt.

    Only thing is we should ask for a lot more than $10 million for research. That is a pittance in the government’s budget. And let’s not put down hay fever sufferers. I have debilitating alleries in spring, summer, fall to every kind of pollen, mold, weed, etc. and it worsens the ME/CFS symtoms and also sets off asthma, which can be dangerous. The allergies make me even more homebound many days of the year.

    Even as I type now I’m having trouble breathing as mold and weed pollen comes streaming in despite a/c and my throat tightens up and muscles spasm. This goes on all the time.

    I’d say let’s ask for $100 million for research for causes, biomarkers and treatments. Money can come from other areas, including military weapons development and war, which cost more than $600 billion a year which taxpayers pay.

    I’m not for saying that money should be taken from research funding for other diseases as people suffer a lot with them.

    Also, let’s not forget Dr. Jose Montoya and his team at Stanford U. that has found brain abnormalities in people with ME/CFS. They need a lot more money for their research.

  12. Sasha says:

    I wonder if this meeting should be the target of a coordinated patients’ campaign on a specific issue, such as NIH funding or a better NIH home than Women’s Health, as per Brian Vastag’s letter in the Washington Post?

  13. Denise says:

    Has there been any word on Collins’ response?

Comments are closed.