The NIH Pilot Program: What We Can Do

Credit: Wilder/Metzger

As I discussed in Part One of the NIH Pilot Program, NIH thinks that the three (and only three) Collaborative Research Centers are seeds to generate interest in ME research, and will wait for more research applications to come in over time. NIH’s slow approach to case definition is going to take ten years (or more) to show results.

I have gotten a lot of feedback asking what we can do, or expressing despair that NIH will not move fast enough to help us. There are people with ME who have lost careers, families, financial support, and more, and when I come out with a post like that one, they lose hope.

But we have to face reality in order to demand that NIH face reality and act with urgency. Don’t lose hope; get mad. If you feel despair that there are still no treatments and NIH is just twiddling its thumbs and whistling innocently, then get MAD.

We are NOT powerless!!!!! Not by a long shot. I have ideas about what we can do, collectively and individually:

Self-care: First and foremost, take care of yourself. We are stranded on a desert island, and the first thing we need to do is address our survival. Do that first. Take care of yourself, and each other. Then if you have the capacity, spend some energy on action.

Congress: When Congress expresses an interest, then NIH responds by doing something. Even the back and forth in the budget report shows that NIH will address concerns raised by Congress. So we need to keep pressing Congress – not just for report language, but the Senate resolution, and the request for a hearing. Every single person who can should try to establish a relationship with his/her/their elected officials. When those officials ask what NIH is currently doing about ME research, do what one commenter suggested and give the officials my previous post.

Dr. Collins: We can’t stop with the letter to Dr. Collins. The ONLY reason we have the CRCs and the Clinical Center study is the pressure we have applied up until now. The National Academy of Medicine report and P2P report (which both came out of attention from the CFS Advisory Committee), #MillionsMissing, and media coverage generated enough questions and enough embarrassment that Collins had to act. So we need to INCREASE that pressure. Call, email, or fax your story to Dr. Collins. Sign petitions. Are you up for direct action protests? Talk to MEAction and #MillionsMissing.

State Efforts: The advocacy community has never had the human resources to tackle state awareness issues on a broad scale before. But there is a lot you can do at the state level, and it can have an effect federally too. For example, you could urge your state health department to start tracking ME. Local efforts in New York State led to that Department of Health publishing an excellent new page about ME.  Awareness events with health department personnel or state legislators are key as well. A lot of interest and media coverage has been generated by local screenings of Unrest. Not only will you help improve awareness and care at the local level, but as more states pay attention it will put pressure on the federal agencies as well.

Researchers: I’m not letting anybody off the hook. People with ME and their allies are pushing from the advocacy side. But researchers have to push from the science side. NIH would have dismissed the science capacity of this field even more vigorously if there had been only five CRC applications, instead of ten. But what would NIH have thought if there had been fifteen or twenty applications?????? I know first hand that writing grant proposals is a time- and soul-sucking process. Researchers, do it anyway. The number of applications matters a lot. Please help us help you.

CFS Advisory Committee: There is another meeting of the CFS Advisory Committee at the end of June. Pay attention. Offer written or spoken public comment. The recommendations from that Committee do have an impact. Let’s help the Committee make stronger recommendations.

General Awareness: Tell your story. Participate in a direct action. Recruit one new person to advocacy this year. Send emails. Use Twitter! You can talk to Dr. Collins (or at least his office) by tweeting @NIHDirector. There are so many ways that you–yes, you, reading this right now–can do something to put more pressure on NIH. A groundswell will force NIH to do more than just wait five or ten years before doing something more. We are just getting started.

NIH may be content to throw seeds in the air and see which ones grow. NIH may be content to wait another five or ten years before taking an affirmative step. About one year ago, I predicted NIH’s approach:

NIH’s current strategic and policy approach to ME: risk as little as possible, cautiously drip in a little more funding, and wait patiently for something to change, some day, far down the road.

NIH wants to wait five more years or ten more years to do something different, but I’ll be damned if I wait without trying to kick up the pace. I will do all that I can to require NIH to do much much more on ME research, or I’ll die trying.

And that sure beats just waiting to die.

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18 Responses to The NIH Pilot Program: What We Can Do

  1. Bazia says:

    🤘🏻👊🏼

  2. Sharon Campbell says:

    We need congressional action to support research funding for MECFS right now. Not in three years not in five years but we need it right now. The federal budget is not sustainable and millions of people are getting sick and removed from the workplace many of which are depending on federal funds , Medicaid and Medicare just to survive. Because this is a growing disease worldwide funding domestic research right now is highly important because researchers are out of pivotal point and running out of money and help with research. Let’s end this illness now and stop draining the federal economy. Let he’ll these patients who can then return to the workplace And lead more fulfilling lives rather than waiting to die.
    Congress please spend some money now to give health back to these people who can return to the workplace and began replenishing federal funds instead of draining them.

    We are sick and would rather be more productive members of society again. We cannot do it without research funding.
    This congressional backed research funding for MECFS is a very worthwhile investment with great returns.
    Definitely not wasted money like many programs funded by our federal government.

    A very sick constituent who cares.

    • Shy says:

      I think we also need to be concerned for the time for ME/CFS to be now because many of our respected researchers are retiring or may be in the next few years. These people have spent decades or large chunks of their career on us, they are making progress and unraveling more and more… they need funding, support, and importantly clinicians and young researchers to take interest!

      Do what you can, as they say “many hands make light work”

    • Suellen Tritt says:

      Congress are corrupt too… I Lobbied Congress for a few years, and have proof… just for instance, “Hil” sure DID know (Billy Boy was blackmailed by Ross Perot to fund for Vets right before he left office, so they very slyly & quietly put out PTSD Pamphlets in the VA & Emory = across the street from the CDC!) – but she didn’t give us the time of day when we had an appointment to speak to her rep… her predecessor, Moynahan gave strict instructions to his rep to say “NO!” to everything I asked for – this was startling – especially she remembered me for pressing her a year later!!! When I let the cat out of the bag that they were being lied to on prevalence to Schumer’s rep, they reacted, but the nasty CAA told them NOT to listen to me (it was my first year in DC on Lobby Day). Little did I know then that this DD is also Autism / Asperger’s, et al. Only Nevada’s Harry Reid cared, but he couldn’t take on the whole government by himself. There’s more… but this is insidious – it’s an even more pervasive “Economic War” = a term I coined in Oct 2000 in one of my 2 in-person Testimonies to the HHS’ CFSCC. I reiterated this last year in Tele-Conference to the CFSAC – that little did I know how much more pervasive it would be 17 years later! Not a pin dropped – not one of the panel stated a word in response! OY!!!! They’re slicksters… The UK is in lockstep still (of the 5 Coalition Countries)… entirely disgracefully! They don’t learn from history & abusing their ‘subjects’! Diana’s boys doing ‘charity’ for ‘mental illness’ is a farce…. let them tackle THIS to DO GOOD!
      Plus, don’t forget that the CDC got away with lying to Congress – I was in the then Sr. Senator’s office for Nevada when the GAO Report came out – I was startled about the “Magic Missing Millions” as I coined the $12.5 MILLION missing! Koplan proffered “No one took a cruise on the still missing $4.1M.” But how does he know that? They punished us by keeping disgraceful Wm. Reeves (the whistle blower only to save his own butt) as head of the CFS Program. It’s absultuley despicable, and they’re not likely to do anything to help while multi-billions are at stake for Big Pharma & Insurance wonks! REALLY! Outing them big time is probably one of the only ways. I’ve also done other Advocacy to try to bust it open medically – bringing several miracles… more another time!

  3. marcie myers says:

    Your posts are about as valuable as they come. Full of statistics that are reliable and quotable. I live in SC and I believe that Lindsay Graham is on the Appropriations Committee and read in the past that the NIH is required annually to justify each penny spent on various diseases. When during the year does this happen? That’s when we need to inundate the committee above and beyond what the NIH has to say. We have the numbers, we have the will, we together have the skill. I believe I will send letters written in brightly colored ink to more so acquire their attention. Tell them what’s REALLY going on. I’ve waited 25 years for nothing to happen. And it sucks. Bad. Marcie

    • Suellen Tritt says:

      Many years ago I encouraged wonderful Lenny Jason of De Paul to undertake an “Economic Impact” paper – as he had the chops to publish. & he did a great job! The results are startling, and to date, no doubt even more so! But no one took umbrage… they’ve got it all “GASLIT” to the max! IF I was even 20% of who I used to be cognitively, I’d take this on, but I’ve lost 51-70 points in my IQ. Still I know, and can prove, they are obfuscating us to death, literally! There ARE MEDICAL PROOFS already, but they are systematically being suppressed & ignored. Even Lipkin agreed with me = it’s PATHOGENIC, as I’ve been pleading with him for over two decades to HELP US – a long story for another time! But, at least he’s put solving this DD on his “Bucket List” & created the “Microbe Discovery Project” at Columbia U, and brought his ask (of me & Jon Sterling – then the CEO of the CAA, who I’d invited to the in-person meeting I set up when Lipkin moved to NY, where I lived then) down substantially from $20M! It continues to be insidious!

    • Jennie Spotila says:

      Marcie, part of NIH’s justification for its spending is in the document I cited in the first post, that accompanies the budget request for the next fiscal year. NIH is also required to report spending correlated to burden of disease, but even the WHO burden of disease study did not calculate the burden for all diseases. This will become more of a focus as time goes on, I suspect.

      • marcie myers says:

        Dear Jennie,
        I keep up as best I can but lose a lot of continuity due to my illness. So thanks for filling in the shadowy areas for me and I will read them again. As one person, I am planning on meeting with Senator Graham, SC, as soon as it can be arranged. What would you advise my plan of action to be? I want to keep it as simple as possible. Don’t tell him details that are irrelevant to him but from which angle would you advise I approach?

        • Jennie Spotila says:

          There’s the proposed Senate Resolution. I suggest getting in touch with MEAction to see where they are on that, and whether Graham has already signed on.

  4. deboruth says:

    Perhaps we might do better calling it what it is — Mass Murder, as were the first years of AIDS. Mary Dimmock got into the disease burden concept. The WHO measures health and disease by QALY. In this system say MS scores .65 in the WHO tables (which is something close to my memory of them) and ME is worse than severe MS, as acknowledged by experts. We might say that the average case of ME is .75. Ergo, four average persons with ME equal 3 deaths. Severe cases such as the late Merryn Crofts might be .90 as an equivalent to WHO shores. Ten such severe ME equal 9 deaths.
    Another way to look at it is that in the US population it is reported that AIDS patients lose on average 14 years from the statistical average life span. ME patients in the US have on average lives foreshortened by 18 years. There are about 1.1 million AIDS patients and 1.1 million ME patients. Now we need to know how many AIDS patients died per year in the period that yielded the 14 year foreshortening figure and, with a little algebra, we can come up with a plausible probability of how many ME patients are dying per year. Then we can work on gather the variables we will need to plausibly extrapolate to other nations such as the UK (charity found lives foreshortened 20 years by ME.)
    The two methods of course are alternative ways of viewing death, not complementary.

  5. marcie myers says:

    Jurisdiction
    This subcommittee oversees funding for the Departments of Education, Health and Human Services, and Labor. Certain agencies within Health and Human Services are handled by separate subcommittees, such as the Indian Health Service (Interior Subcommittee) and the Food and Drug Administration (Agriculture Subcommittee).

    It also oversees funding for several related labor, health, and education agencies, including the Corporation for National and Community Service, Corporation for Public Broadcasting, the Mine Safety and Health Administration, and the Occupational Safety and Health Administration.

    Membership
    Members, 115th Congress
    Majority Minority
    Roy Blunt, Missouri, Chairman
    Thad Cochran, Mississippi
    Richard Shelby, Alabama
    Lamar Alexander, Tennessee
    Lindsey Graham, South Carolina
    Jerry Moran, Kansas
    Shelley Moore Capito, West Virginia
    James Lankford, Oklahoma
    John Neely Kennedy, Louisiana
    Marco Rubio, Florida
    Patty Murray, Washington, Ranking Member
    Dick Durbin, Illinois
    Jack Reed, Rhode Island
    Jeanne Shaheen, New Hampshire
    Jeff Merkley, Oregon
    Brian Schatz, Hawaii
    Tammy Baldwin, Wisconsin
    Chris Murphy, Connecticut
    Joe Manchin, West Virginia
    Ex Officio
    [6]
    Patrick Leahy, Vermont
    See also
    United States House Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

    Chronic Fatigue Syndrome (-$5.4 million)
    The FY 2019 Budget eliminates funding for Chronic Fatigue Syndrome (CFS) activities. CFS affects between one
    and four million people in the United States. CDC’s CFS program works with states and experienced clinicians to
    develop tools to gather and analyze surveillance data and to educate clinicians and the public on the results of
    evidence-based studies. NIH has been funded to conduct biomedical research on CFS. CDC will prioritize funding
    to programs that support a broad range of diseases to maximize effectiveness in this limited-resource
    environment.

    Am I reading the above correctly? That the 2019 budget ELIMINATES funding for CFS? And the CDC will prioritize funding to programs that SUPPORT A BROAD RANGE OF DISEASES to maximize effectiveness…..? Could you translate this or tell me which part I’m misunderstanding? For those of you reading this, the first part lists who is on the Appropriations Committee (Senate) which includes my SC Senator Lindsey Graham. I will somehow make a way to see him in person armed with statistics and hope that he will come away with a clear understanding of what we are up against. People living in other states can do the same. Maybe we’d want a similar if not the same documents and approach. Jennie, would you be able to clarify what I’ve read and offer some imput. Going thru the NIH is a humiliation but the HHS must answer annually to the Appropriations Committee as to the reason each penny is doled out to various diseases. So it would appear logical that it’s the members of the Appropriations Committee that we must launch our own limited energies toward. Researchers have mortgages and must go where the money is and where the money will continue to be. I say this because so few researchers bother to fill out the grant forms because, rightfully so, it’s likely the money will not increase nor continue unabated if I am reading this correctly. If we want research and lots of it with lots of patients and controls and duplication which is good science, we must see to it that there is money allocated specifically for ME/CFS research and that this money continues and increases. No money, no research. No research, no money. As I did not know where to go to with this information, I’ve brought it to you, Jennie, in the hopes that you could orient us to a plan. I’ve always done individual advocacy for my disease but here we need to join together purposefully. Thank you. Marcie Myers

    • Jennie Spotila says:

      The language you cited is probably from the proposed CDC budget for 2019. The same language has been in every CDC budget at least as far back as 2016. I wrote about it here: http://occupyme.net/2015/08/04/no-cdc-funding-for-cfs/

      My view is definitely in the minority.

      • marcie myers says:

        Jennie, the fact that your view is in the minority is likely a good thing. Like I’d mentioned, I don’t think that Senator Graham needs 40 pages that do not directly regard him which is why I’d said that crayola crayons would be an attention-grabber. When is the schedule for 2020’s budget. I don’t want to begin too much too far ahead of schedule so that it is fresh in his brain. Perhaps weekly through the mail a short note with one of my photographs attached, each building on the prior, the goal being a lot more money for research AND the CDC money back to educate the docs and students. 25 years later. The bough must break somewhere that will bring us substantially more research money every year for years to come. And what to do with our loyal buddy Collins? And Unger for that matter. And Primer needing updating and our being blackmailed by Friedberg. Smart ass.

  6. marcie myers says:

    I’d like to offer a copy of the response from Dr. Fred Friedberg regarding updating the Primer for Current Practitioners published on Amazon and available via online. As I am trying my best to produce a PSA that will compel current practitioners to research the subject, it occurred to me that we needed an educational site available for doctors. So, I wrote Dr. Friedberg and inquired when it would be updated as they’d stated they would do as a matter of course and what follows is his reply….Hi Marcie,

    We’ve had many request to update the primer and would like to do so, but assembling busy professionals (as co-authors) and getting my organization involved requires substantial funding on the order of $100K. If any individuals or donors are willing to fund a revision, we would be happy to do this.

    We do advocate for increased credibility among practitioners through our biennial conference and publications such as the primer. But as you noted there’s a long way to go.

    Best regards,

    Fred Friedberg

    To say that I was shocked is an understatement. Is he not a government employee but I guess he wants to be paid additionally for his talents. Is there no accountability for the IACFS stating they would keep it updated online at least and then receiving a response such as this? You can have them for 100K. Thanks, Fred.

    • Kimi West says:

      I know he has a currently funded research project that is sub par to say the least. A huge waste of money.
      If any one looked into the details they could see that the research is flawed in many ways.
      It’s keeping him on payroll but the research now is an embarrassment.
      Sorry. I wish I could say something positive. The funding is defiantly not in the hands of the proper researchers.

    • Jennie Spotila says:

      Dr. Friedberg is not a government employee. He is on faculty at SUNY Stony Brook, and as Kimi pointed out he has NIH funding. I described the study as part of my post on 2017 NIH funding: http://occupyme.net/2018/03/20/2017-nih-spending-on-mecfs-research/

      Dr. Fred Friedberg received a combined $460,376 for his study of correlations between patient activity, stress, autonomic symptoms, and non-improvement. The primary aim of the study is to look at activity, daily hassles, and negative life events, so I classify this as a psychological and behavioral study.

      • marcie myers says:

        So, how does a guy like Friedberg get SO much research money? That is 1/10th of our entire budget he is playing with. Just curious, could WE apply for a grant? And use it for public awareness in a major way.

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