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Dear Dr Collins, Can the NIH spare a few dimes? by ex Washington Post journo with ME/CFS

Discussion in 'General ME/CFS News' started by Simon, Jul 14, 2015.

  1. Simon

    Simon

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    Brian Vastag was a science writer for the Washington Post before ME/CFS made it impossible for him to continuue.

    This is personal and frankly brilliant appeal to Francis Collins, NIH Director, to at least start to take ME/CFS research seriously, and to find some more cash.

    The Last Word On Nothing
    Dear Dr. Collins: I’m Disabled. Can the N.I.H. Spare a Few Dimes? - Brian Vastag


    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...

    ...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.

    ...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.

    [he's trying to make it really easy for Collins to say Yes]
    ...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.

    ...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.

     
    Joh, KauaiWahine, MeSci and 52 others like this.
  2. Asa

    Asa Senior Member

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    I don't think people with untreated illnesses are a drain on society though. We the people pay (taxes) for health research and insurance, etc.

    Corrupt and/or incompetent bureaucrats, researchers, medical professionals, corporations, media, etc. are a drain on society. [Edit: https://www.fbi.gov/collections/health-care-fraud?b_start:int=0]
     
    Last edited: Jul 14, 2015
    leela, Antares in NYC, *GG* and 2 others like this.
  3. aimossy

    aimossy Senior Member

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    Great letter!
     
    WillowJ, Izola, moosie and 6 others like this.
  4. Sasha

    Sasha Fine, thank you

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    Spectacular piece of advocacy. I think it's the single best appeal article that I've ever read.
     
    Izola, moosie, Ecoclimber and 8 others like this.
  5. K22

    K22

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    That letter by a journalist might have clout & is absolutely great until its gets to the money side and undermines what other groups are asking for ...

    We need much more than a few dimes. I personally dislike a low aiming approach to fund raising when the USA has a large me/cfs population and some are horrifically sick. Aim low and they will lap a chance to just upgrade to slightly bigger peanuts as they did in the UK. We need advocates to always now have strong demands for a devastating illness afaic until the aims are met

    I appreciate this great effort writing & campaigning - I write a much less good letter on a rare good day - but don't wish to see more USA advocates saying we should slash the demands & start agreeing with the counter argument that big money is too much for us / CFS can' t possibly deserve that, at this time ripe for big change. $10m will not even fund half of Ron Davis ' severe m.e project, its nothing & just twice the pathetic $5m USA currently gives. There might be solutions "in the end" but it is not good enough to take a slow path of funding a few small projects extra & we should not afaic contemplate that option.

    At the speed of progress envisaged by some i will be dead before any solution as I'm not a newly ill anticipating that my productive life is over like the author but a long term bed bound, already wasted for decades.
     
    leokitten, zzz, Scarecrow and 9 others like this.
  6. Sasha

    Sasha Fine, thank you

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    I see what you mean, @K22, and I've campaigned elsewhere for asking for $250m, but I agree with Simon that what Brian is doing in asking for $10m/$20m is making it easy for Director Collins to say 'yes' (indeed, impossible to say 'no', one would think).

    The main thing is that he's asking, he's asking extremely well, it's personal, it's powerful, it's public... and we need a start.

    The END ME/CFS 'severely ill' project is looking for 1m in the first instance so the money that Brian is asking for would get that first phase more than fully funded.

    If we can get $10/$20m now then our scientists will soon be churning out results that will enourage the NIH to cough up far more.

    We're fighting this battle with the NIH on a lot of fronts and I think there's room for a lot of approaches.
     
    leela, waiting, catly and 12 others like this.
  7. aimossy

    aimossy Senior Member

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    I think it is the best peice I've seen so far as well. I don't think it undermines the efforts for big bucks at all but understand the need to call for the equality in dolls amounts. But its shows how ridiculous it all is that these programmes aren't being funded that need funding right now and they could do something about it. I loved the use of ritux as well as it is good leverage. I thought it was argued well and I like the personal bits all through it. We are not just numbers!
     
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  8. Bob

    Bob

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    Being brain fogged today, it took me a while to realise that Simon has only posted a short extract from Brian Vastag's letter. So make sure you all click through to the blog to read the full letter.

    It's a great letter. It really is.

    I agree with @K22 that Brian Vastag is aiming too low. $10m is little more than is currently being invested in ME/CFS research. (I know it's double, but double of nothing is still nothing.) And we need a large step-change, not an incremental change. And if one is bartering, or negotiating, then one needs to start high, and compromise later, not start with a disadvantage. But, I'm of the belief that all advocacy is good advocacy because it raises awareness and adds pressure. And this is a great letter. So I'm just making a niggly point, and this isn't a criticism of the letter as a whole. And in terms of politics, such an approach isn't necessarily an inferior approach. It's our community's combined efforts that will make the difference.

    Here's some info re Ron Davis' advocacy efforts with Francis Collins, for anyone interested, via Janet Defoe, mother of Whitney Defoe, posted by @RL_sparky: http://forums.phoenixrising.me/inde...s-accurate-and-informative.38691/#post-618325
     
    Scarecrow, Kyla, Simon and 1 other person like this.
  9. aimossy

    aimossy Senior Member

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    I meant dollars not dolls!
     
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  10. Sasha

    Sasha Fine, thank you

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    If we get dolls, we can sell them for dollars! As long as we get loads of millions of them. :cool:
     
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  11. mfairma

    mfairma Senior Member

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    This is a good letter, but we're long past the point at which we should be accepting incrementalism.

    10 million and, more importantly, the move out of women's health could accelerate progress in research, but the agency that gives us an increase of that size is out to placate, not to accelerate research. While the additional funds would have value regardless of motive, what we need, and what is symbolized by the 250m request, is a broad governmental commitment to this disease. Research offers hope of future diagnostics and treatments, but we know enough now to change the name and clarify the definitional muddle, shred old medical education, create new guidance for schools, employers, and social security disability, etc. There are many things that we can do now to ensure that newly ill patients do not have to suffer ridicule and abandonment as many of us have suffered and I suspect that the government that increases funding by only five million will do so to buy time before making changes that can help today.
     
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  12. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    The true "Wealth of Nations" are their PEOPLE!!
    Money is merely a tool, literally it's like hydraulic fluid, a "means of exchange of energy"
    But we've turned it into a cultural "god being" and our societies are going to hell because too few folk at the top get what Capitalism really means and requires, as all they want is "absolute ruler and ownership"
    and our struggle is part of this.
    Sigh :(
     
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  13. Bob

    Bob

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    lol, I'm disappointed. I thought you were onto something there. :)
     
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  14. jimells

    jimells Senior Member

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    Yes it's a good letter but it is still begging for crumbs like dogs at the master's table. We shouldn't be asking for favors - it's perfectly reasonable for us to *demand* that Collins and Fauci do their job of allocating limited resources to the greatest needs. Publicly funded research on male pattern baldness wouldn't be on my list, for example.

    Media attention, famous people making public statements, mailsacks full of letters to Congresscritters, it's all been done over and over for decades with no result. It's hard to avoid the conclusion that the hallowed processes for redress of grievances that we learned in grade school do not apply in the real world. So another approach must be sought out.

    Who is actually making the policy of not funding research? A case can be made that the policy is just a calcified institutional holdover from Straus and Reeves who were quite clear they considered the illness to be bored housewives seeking attention and other rubbish. But the policy has been so well entrenched for so long it's hard to avoid the conclusion that we are seeing something more.

    The connections between the Wessely School, the UK Dept of Work and Pensions, and the disability insurers have been well established. It's also well established that disability insurers save huge amounts of money by insisting that ME is a mental illness that only gets benefits for two years. There's no reason to think the situation is much different elsewhere, especially as these are international corporations.

    What would the disability insurers think about the concept of treating the illness and avoiding benefits claims altogether, especially in UK, where the NHS would conceivably pay for the treatment? Obviously they are going to be very interested. They would throw Sir Simon and crew overboard in heart beat, just like they've done to patients.

    Instead of sending more letters to people following someone else's orders, I suggest we lobby the actual policy makers, the disability insurers. The insurers will not be able to continue this mental illness charade indefinitely. There is just too much biological evidence. They now have every incentive to reject psychosomatic nonscience and support real research on real treatments. The sooner treatments are approved and made available the sooner disability claims can be terminated as patients resume their former lives.

    The insurers would even improve their sorry reputations if they switched sides - and it wouldn't cost them a penny!
     
    Ecoclimber, SilverbladeTE and *GG* like this.
  15. Bob

    Bob

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  16. Forbin

    Forbin Senior Member

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    I think we need someone of influence to nominate Francis Collins for the Chili Pepper Challenge.

    The problem is that researchers would probably shy away from this as being impolitic.

    Perhaps just a humorous movement of ordinary people including him among their nominations... :)
     
    WillowJ, Ecoclimber, Kati and 9 others like this.
  17. user9876

    user9876 Senior Member

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    People need to be given achievable goals. Collins may well be able to find 20m (not sure what the total budget is) with relatively little fuss but to find 250m would mean a massive raiding of other research pots which would cause a massive political battle. One which Collins would know was coming and probably want to avoid. But a relatively modest starting position along with some high quality proposals such as could come from Lipkin and Ron Davis could enable Collins to take some action. The next stage is to ask for more.

    My point is as well as campaigning on big targets we should also offer simple steps that can be taken. That way we may get somewhere.
     
  18. viggster

    viggster Senior Member

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    Hi...Brian here. Thank you for all the kind words and for sharing the letter. I've been told Dr. Collins read it and will be responding...we'll see. As for asking for too little - well, as a journalist, I was always deeply pragmatic. When you have two hours to write a story, you don't go for *greatest story ever*, you do what you can with the time and resources you have. I do think that the most important step now is for NIH to give responsibility for ME/CFS to one of the institutes and to publicly come out and say, We're doing something about this. Sure, I'd love a billion dollars a year set aside to help cure us all. But that's not going to happen tomorrow. It will take time to build up support within NIH for a robust ME/CFS program. Doubling or quadrupling funding would be huge. And I made it clear to my contacts in Dr. Collins' office that if they make such a move, every science and medical reporter in the world will know about it. I spent 15 years getting to know many people in the business, and I made a lot of friends. Positive media coverage is important to the people at the top of NIH, and so I hope that this carrot-with-implied-threat-of-stick approach helps make something happen. I think it's even more important that prominent scientists like Ron Davis are lobbying Dr. Collins. This feels like the time when NIH may just move its concrete feet. Here's hoping....
     
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  19. Gemini

    Gemini Senior Member

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    Brian's letter is excellent! :thumbsup:

    Clearly states the problem and presents an action plan for Francis Collins: move ME/CFS to an Institute; charge the Clinic to run treatment trials; and increase research funding.

    NIH is about to get its biggest raise in 12 years. Congress wants it spent this way:*
    $100 million Antibiotic resistance initiative
    $135-160 million BRAIN neuroscience project
    $165 million National Children's Study
    $200 million President Obama's Precision Medicine Initiative(PMI)
    $300-350 million Alzheimer's

    *Science, 3 July 2015

    In order to make up for falling behind in ME/CFS research I'd also like Dr. Collins to get an ME/CFS cohort fast-tracked into the $200 million Obama Precision Medicine Initiative's national registry.

    Here's a 15-minute talk Dr. Collins gave at the White House July 8, 2015 honoring patient advocacy groups for their PMI work (Collins @ 10:00-26:00, first speaker is Brian Deese, Senior Advisor to the President)




    .
     
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  20. Bob

    Bob

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    I've added to this list since I first posted it. Look through some of the people. There are senior journalists, opinion leaders, people with massive Twitter followings, and even an ex-advisor to Al Gore.
     
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