The NIH Pilot Program: Wait and See

Credit: Wilder/Metzger

MEAction has collected thousands of signatures on a letter to Dr. Francis Collins, asking for a meeting with him and a plan of action to attack the ME public health crisis. That request is all the more urgent because NIH already has a de facto plan for ME, and more than a few people with ME will die before that plan produces meaningful results.

What is the plan? NIH is going to wait for the new Collaborative Research Centers to lead to more research proposals, rather than investing money to stimulate that research now. NIH has no intention of addressing the need for a consensus case definition now, and has chosen an approach that could take a decade or more.

NIH doesn’t officially call it a plan, and has neither announced it to the ME community nor engaged with us in formulating it. Denise Lopez-Majano found the plan buried in the hundreds of pages NIH submitted to Congress with its 2019 budget request. But despite how feeble NIH’s plan is, we can do something about this!

Today, I will tell you what we know about the plan. In my next post, I will share ideas for what we can do about this. NIH may be content to twiddle its thumbs and wait, but I am not.

Finding the Plan

Each year, NIH submits a request to Congress as part of the President’s budget for the next fiscal year. Congress passes a budget and includes comments back to NIH in its appropriations report. Those comments are not binding on NIH, but they do show NIH what Congress cares about. So the following year, NIH responds to that report language to show Congress how they are addressing those issues. This back and forth between NIH and Congress is not something most people pay attention to, although ME advocates have succeeded in getting favorable report language many times over the decades.

Denise Lopez-Majano found NIH’s plan for ME on pages 76 and 77 of the FY2019 document called “Significant Items.” In the report language with the 2018 budget (finally passed in March), Congress had recommended that NIH “consider increasing research funding to be commensurate with disease burden,” and suggested several types of projects to accelerate progress in the field. In its 2019 response titled “Action taken or to be taken,” NIH described its current approach to ME and deflected many of Congress’s suggestions. And between the lines of its response, NIH revealed what it plans to do (or not do) beyond FY2019.

Congress Says One Thing, NIH Does Another

RFAs: The 2018 Congressional appropriations report suggested RFAs for biomarkers and treatment trials. We already know that NIH is not doing this, and there is no plan to do it in the future.

Funding: The report suggested additional funding for investigator-initiated studies and early stage investigator awards. NIH said it encourages new grant applications, funded one fellowship, and it expects the three Collaborative Research Centers and Data Management and Coordinating Center to attract more researchers to the field. Of course, NIH failed to point out to Congress that there is no current Program Announcement for ME/CFS, which would normally signal NIH’s interest in those types of applications.

NIH also claims that 2017 funding will reflect an increase due to the CRCs as well as “new and on-going investigator initiated projects.” My analysis shows that this is not entirely true. Funding did increase overall, but without the CRCs the 2017 funding would have DECREASED by almost 15%. The only new grants were the fellowship and Dr. Kathleen Light’s grant, totaling less than $375,000 in 2017.

Case Definition: The report also suggested NIH undertake “an initiative to reach consensus on the case definition.” NIH said no. Specifically, NIH said, “Developing better diagnostics and ways to characterize patients are necessary before reaching consensus on a case definition” (emphasis added).

In other words, NIH will take no immediate action on reaching a consensus case definition. Congress suggested it. Advocates have demanded it. The P2P report recommended it. Nope! NIH wants “better diagnostics and ways to characterize patients” first. Never mind that NIH’s willful neglect is a major contributing factor to our lack of better diagnostics.

NIH Has A Plan: Do A Little And Wait

NIH’s responses in this report reveal its true approach to ME for 2019 and beyond. NIH is running a pilot program, and waiting to see what turns up. That’s the sum total of the plan, and this means people with ME are in for a very very long wait.

Yes, NIH funded three CRCs and the DMCC in 2017. But NIH could have funded more. In fact, Cort Johnson reported that, “Vicky Whittemore said the proposals were strong and if enough funding had been provided, the NIH could have funded several more centers.”

Think about that for a minute. There were other proposals good enough to be approved if there was more funding available. We could have more CRCs right now. Why don’t we? Because NIH would not invest the money.

Do you know why? Dr. Walter Koroshetz actually told us why on June 9, 2017 when he said:

I think the goal was that this was not the solution but the seed to grow the research that could then come in through regular mechanisms or else to kind of add on centers so we can kind of move the field across. I think we could fund three, three or four centers, that’s not gonna do it. (emphasis added)

NIH is planting seeds, my friends. Seeds. And NIH is content to wait and watch those seeds grow. I admit that I am not much of a gardener, but I do know that you can’t just wait on seeds. You need to prepare the soil, water frequently, and fertilize. THAT is how you help those seeds grow into a fruitful garden.

There is another piece of NIH’s slow strategy: the intramural Clinical Center study led by Dr. Avindra Nath. This study is using very tight selection criteria and is doing the deepest dive ever into the pathophysiology of ME. The results from this study will inform–but not conclude–NIH’s direction on those better diagnostics and patient characterization that NIH sees as the prerequisite to establishing consensus on a case definition.

Credit: Wilder/Metzger

So how long will this take?

First, it’s important to remember that the Clinical Center study is small. As Dr. Nath said in March 2016, “[Y]ou don’t want to do a huge expansive study the first time around. If it takes 1000 patients to find something, it probably isn’t worth chasing a result.”

The study was originally planned to have 40 ME/CFS patients, 20 healthy controls, 20 post-Lyme patients, and 20 people with functional movement disorder. The movement disorder group was subsequently dropped and the healthy control cohort increased to 40.

From the very beginning, Dr. Nath cautioned that the study would take awhile, with each subject requiring a week at the Clinical Care Center, and an additional two weeks for those who come back for the second visit. The first visit was later extended to two weeks for people with ME because they cannot undergo as many tests in a day as the other groups. Dr. Nath kindly provided me with an update on the number of subjects who have gone through the protocol and those still remaining as of May 7, 2018:

  • People with ME (first visit, 2 weeks): 13 of 40 completed
  • People with ME (second visit, 2 weeks): 2 of 20 completed
  • Healthy Controls (first visit, 1 week): 16 of 40 completed
  • Healthy Controls (second visit, 2 weeks): 5 of 20 completed
  • Post-Lyme Controls (first visit, 1 week): 0 of 20 completed
  • Post-Lyme Controls (second visit): 0 planned

Based on the number of weeks per visit, the 36 total visits so far should have taken 56 weeks. The reality is that it has been 82 weeks since the first subject visited NIH (Dr. Nath previously said visits began at the end of October 2016). No doubt some of the delay is due to holidays and other calendar issues, and some of it was caused by working out the kinks in the protocol. However, even if all delays were eliminated, there are still 164 weeks remaining to complete data collection. If the pace remains the same, we could see 239 weeks go by before the collection phase is complete.

In other words, we are looking at an additional 3 to 4.5 years for the data collection phase of this study to be completed. That’s not data analyzed and results published; that’s just data collection. Unless NIH increases its pace, data collection won’t be completed until May 2021 at the earliest.

But will this study produce a case definition? Dr. Nath addressed this back in March 2016 when he said, “Whether we are able to establish [a case definition] beyond an element of doubt or not, it won’t be from this study.” (emphasis added)

Dr. Walter Koroshetz then commented:

the biologic basis of the illness in most of the illnesses is eventually what moves the definitions and allows break-up in the heterogeneity of a disorder.

It’s a particular biological entity. That process is a long process. And so, I would urge people to basically stay the course there. Clearly this protocol which is looking currently at 40 patients – what they find will then need to go into another stage to be validated in other groups of patients to make sure that it’s a real finding that can be generalized. (emphasis added)

In other words, the Clinical Center study will not produce a new case definition. The results may get us closer, but as Dr. Koroshetz points out, it will be a long process.

NIH won’t put a firm timeline on all of this, of course. But I will make a firm prediction: If NIH is going to wait for better diagnostics, better patient characterization, and for Nath’s findings to be validated in a larger group, then NIH won’t return to the case definition issue for at least a decade.

To summarize: NIH is using the three Collaborative Research Centers (but only three) as seeds to generate interest, and will wait for more research applications to come in as a result. NIH’s slow approach to case definition is going to take ten years (or more) to show results.

But we are NOT powerless!!!!! Not by a long shot. In my next post I will share some ideas on what we can do.

 

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50 Responses to The NIH Pilot Program: Wait and See

  1. cort says:

    What a tour de force Jenny. Thanks to Denise for digging up “the plan”. Considering that it will take years for the Centers to actually start publishing anything – which the NIH then hopes will attract other researchers to the field – this is an anemic plan at best. It’s a long slow road to adequate funding.

    The big question is why the NIH won’t do better. My guess is that they’re relying on the Institutes in the Trans NIH Working Group to come up with the dough. We know how that went. It took Vicky Whittemore a YEAR to get the Institutes to cough enough money for three small research centers. Several of the purported supporters of ME/CFS didn’t in throw in a minimum amount ($250,000)

    There has to be another way. The NIH is sitting pretty right now with another boost in funding. Francis Collins and/or NINDS and/or NIAID could surely throw at the minimum another $5-10 million to produce an RFA aimed at individual investigators – our greatest need. They could sponsor a Fatigue Conference to get investigators outside the field interested in ME/CFS and get some collaboration going. I imagine there are many things they could do,

    • Jennie Spotila says:

      Cort, you are absolutely correct that there is SO much more NIH could do. Pressure on Dr. Collins resulted in his ordering of the Clinical Center study and the RFAs for the Centers. There is absolutely no good reason why the Trans-NIH group couldn’t have gone back to him and said they had high scoring applications for additional Centers and they need the funding. Collins could have made that happen. RFAs for biomarkers and treatment trials could happen. Even just a new Program Announcement for ME/CFS research could happen! There is absolutely no good reason for NIH to wait!

    • deboruth says:

      Please not a “fatigue conference.” Focus on “fatigue” will be the death of us, as it isn’t what’s wrong with us. “Fatigue” is a by-product of biological dysfunction in functions mitochondrial, immunological, neurological and gastroenterological, for starters.

  2. Laura Logan says:

    Thank you for this excellent summary of the sorry state of affairs, I appreciate how much work it took. Look forward to your next message on actions we should take.

    It would be a Herculean effort, but do you know if anyone has ever considered a class action lawsuit on behalf of ME patients? As for myself, I have been a poor advocate because all my energy has been spent just getting the groceries of life. But have improved greatly and from the helicopter view I see now, it sure seems like a ripe candidate for, I don’t know, dereliction of duty by the NIH. Yup, I must be feeling better if I can cognitively generate that concept. God bless D-ribose plus some things I found to quell brain inflammation.

    • Jennie Spotila says:

      Lawsuits have been discussed for years. But suing the federal government is complicated and expensive. I think that’s why it hasn’t happened yet.

      • Rivka says:

        Jennie, perhaps a State Attorney General could help us with a suit against the federal government.

      • Laura Logan says:

        As someone who has had years of experience in big corporate America, yes I know it’s onerous to consider how expensive and time consuming. I just wondered if it had even been kicked around. There’s probably someone out there with the necessary net worth that has been affected by this.

        Is there a specific mandate or responsibility that belongs to the NIH that they are not fulfilling in regards to ME? I have been too foggy these last years to do more than consider where the buck stops on this mess. It sounds like the NIH.

        I also have wondered why there is not a requirement of those on the front line to deal with this. How can Doctors maintain their licenses to practice without fulfilling some educational requirements for ME? Some time ago the government proposed that they should be educated. Time to put some teeth to that.

    • jimells says:

      The Rehabilitation Act of 1973 is a pretty big stick. Parents have successfully used this federal statute to force federally-funded state and local agencies to spend money on young people who need help in accessing education. Here is the relevant language from Section 504:

      “No otherwise qualified individual with a disability in the United States … shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance or under any program or activity conducted by any Executive agency…”

      The feds exempted themselves from the Americans with Disabilities Act, but they forgot to exempt themselves from the Rehabilitation Act. Oops…

      • Laura Logan says:

        Thanks for this great information. Now that I’m doing better, I have become more curious about the lack of progress, which goes hand in hand with a lack of accountability.

        I wonder who or what government entity is responsible for finding a solution for the debilitating health problem of, estimably, a million Americans. Who??

        • Laura Logan says:

          Dept of Health and Human Services, the Cabinet, The President. And I’m looking for accountability. I should look instead for an eyeroll emoji and let Julie carry on with her good work.

          I did call presidents office of the Kaiser Foubdation just now for fri s just to see if he could point us to a path around this deadlock. His assistant said that would be the NIH.

  3. Eimear Forde says:

    And therein lies the answer why patients lose hope and opt out. It is beyond depressing. How much more can severe patients take? It’s one thing getting through the day but with hope, one can endure an awful lot. When hope is taken away, there is nothing left. And that is exactly what NIH are doing, killing our hope.

    • Jennie Spotila says:

      Agreed. I feel it’s really important to balance this post with something more proactive. I will have some suggestions in the next post, but I would WELCOME ideas for severely ill patients.

  4. S D says:

    I know that you mean well and are trying so hard to make a difference. As a patient with ME/CFS/POTS and Fibro I have difficulties with cognition and retention. This article is so long there is no way I can read/absorb it.

    Thank You

    • Laura Logan says:

      And so it was for me for years. Here’s the gist:

      Congress recommends actions the NIH should take to move this along.

      NIH drags its feet, doesn’t do it.

      Another year goes by. Same routine.

      And more years.

      And here we are:

      We need to find their pain point to be inspired to take action, but we are too tired.

    • Jennie Spotila says:

      I really appreciate your comment SD, especially when the post wasn’t accessible to you. I know that my posts can be too much for some readers. Do you have suggestions on how I can make it easier? I would really like to make the information as accessible as possible. We can talk by email if that is easier for you: jspotila at yahoo dot com.

  5. Bettine Molenberg says:

    Thank you from Holland, Jenny, for all the work this must have taken. It is still pretty much nice words and nothing substantial at the NIH. I very much appreciate all your work; for in the end the solutions, the definitions, the subgroups, possible treatments will have to come from the USA. We are still battling CBT/GET😢 over here , and I believe one virologist has shown some interest. But the bulk will have to come from the US.

    It is quite difficult to understand how things work over there, with Congress and the NIH, so thanks for your clear blog post. I am sure many PwME are following and interested in what is happening in the US.
    Best wishes, and much success,
    Bettine Molenberg

  6. Mark Peterson says:

    Jennie,

    Great job! Amazing that you could put all of that together.

    We have been watching this game since 1998, not much changes does it.

    Keep up the great work!

  7. Sally Jones says:

    Thank you Jennie for another great article. I really like the idea of a lawsuit to force the NIH to do its job. Do you think it would be possible to raise the money to pursue the idea?

    • Jennie Spotila says:

      I think we need to lay some groundwork first. Because the federal government can be sued only in specific circumstances, we need to research whether we can make a case for those circumstances. The other thing to think about is suing an entity that is not the federal government.

      • Laura Logan says:

        Thanks to all for your attention to my query as to whether a class action lawsuit had ever been considered. I know they are a last resort and rarely a good or ready solution. A lawsuit would be a big distraction.

        I take it the answer is “nope, not even In our wildest pissed off dreams.” And I can see why. Just looking for that pain point that might make them take good action.

    • cort says:

      I imagine that a lawsuit wouldn’t work unless we could find language which commits the NIH to fund all diseases equably. Just the filing of one, if it didn’t immediately get thrown out, however, could cause a splash and if the lawsuit had teeth it would scare the hell out of the NIH because if it was successful it cause it to reorder how it does its funding for every disease. It would have to shift billions of dollars in funding around and incorporate burden of disease or need into its funding process. Just that fact would, one think, cause the NIH to increase ME/CFS funding dramatically to make the lawsuit go away.

      I would love to see what happens with one. 🙂 We have such a good case for willful neglect as do diseases like fibromyalgia and migraine which have high comorbidities with ME/CFS.

      • Laura Logan says:

        I like your perspective Cort, now that my D Ribose has kicked in this morning I’m back to thinking a lawsuit splash effect might be helpful. But I don’t want to distract from Jenny’s great piece and her follow up action suggestions.

        Btw, that D ribose is like a miracle for me. We all know that the solution seems to be different for each person, but supplying energy to bodies that look like outtakes from Salvador Dali paintings would seem like one of the first things Doctors would try.

  8. Anonymous says:

    ” FY2019 document called “Significant Items.” ”

    Just some grumbling — the index for this document still lists this disease as “Chronic Fatigue Syndrome (ME/CFS)”.

  9. Lynn Preis says:

    Thank you, Jennie. I’m also following the work that the Open Medicine Foundation is doing. It seems like they’re making progress on biomarkers.

    I’m in Minnesota, where we have the Mayo Clinic and the University of Minnesota. And yet neither one has much knowledge about ME/CFS. It seems like any research that’s happening is on the coasts.

    I look forward to your next post.

  10. billie moore says:

    Let’s remember how annoyed Nath was in being questioned about the study elements on a phone up-date call a year or so ago. And how Koroshetz is always shucking and jiving about how much time this all takes. Sounds very much to me as if they have a collective case of passive-aggressiveness. “Passive-aggressiveness, as the word indicates, is a tendency to engage in indirect expression of hostility through acts such as subtle insults, sullen behavior, stubbornness, or a deliberate failure to accomplish required tasks.” (Psychology Today, posted 11/13/16.) They don’t want to do OUR plan because it is not THEIR plan, and by god, they simply WON’T. As with many work situations, the attitude that is set for the organization comes from the top, and the underlings follow the pattern – for good or bad. So who’s the lead here – Collins or Koroshetz? If someone was in charge who really was an empathetic ally, we would see action. Anyway, as long as they are both in place (and it seems to me they are cemented in place in the NIH), we cannot expect change. Jennie, I look forward to seeing your thoughts on moving them, however.

    • deboruth says:

      Eureka! You are so right. One might throw in Nath’s UK appearance where he labeled his group “Team Tired.” Quite the double entendre — not only are they denigrating us by describing the disease as “Tired” aka “Fatigue” but they are sick and “Tired” of us, and not afraid to say so.

  11. Cindy Downey says:

    Thank you Jennie for your continued insightful analysis.

    Funding our own research Vs. a law suit. Yes, suing would perhaps bring action, and satisfaction, but when? Ten years from now? This might be as slow as the current process. And, what happens to NIH work and the incommensurate funds it provides while this is before the courts? Will all work and funds vanish? If the community can raise some funds for a court case, maybe it can raise a similar amount for more research.

    I am aware the community has already donated 10s of millions for biomedical investigations. So many live in poverty due to ME; governments’ neglect, and can’t afford to donate to anything. Adding another goal, a law suit, might further fracture private funding. But on the other hand maybe a class action law suit is the only way to stop the stalling by all governments.

    And, the case definition issue. Good grief! This doesn’t seem logical! NIH, and many outside researchers use the Canadian Consensus Criteria and/or the International Consensus Criteria to select patients. Why would one of these not be acceptable as the final case definition?

    At time of writing the 12 Canadian Consensus Criteria panel members said : “Based on the consensus panel’s collective extensive clinical experience diagnosing and/or treating more than twenty thousand (20,000) ME/CFS patients, a working clinical case definition, that encompassed the pattern of positive signs and symptoms of ME/CFS was developed.” (pages 9-10 of the CCC – available on the ME/FM Action Network website) Why not use this very experienced group’s expertise and case definition? Or the International Consensus Criteria? The work has already been done.

    In the 2014″NIH Pathways to Prevention Workshop: Advancing the Research on ME/CFS” report, the committee concluded: “that the ME/CFS community agree on a single case definition (even if it is not perfect),…” even if it is not perfect. Where does the ME community feature in NIH plans for discussion on a case definition?

    I have just re-read Dr. Melvin Ramsay’s 1986 book: Postviral Fatigue Syndrome The saga of Royal Free disease; ISBN: 0 906923 96 4. This book notes the first modern day ME epidemic was in Los Angeles in 1934 – 84 years ago! Dr. Ramsay writes about what was known by the mid 1980s about ME (e.g. immune system abnormalities, neurological dysfunction etc.) It’s heartbreaking what biomedical knowledge was available then, and astonishing that governments and the medical establishment have turned a blind eye for so long on this horrible physical disease.

    For anyone wanting a copy of this book, I understand the ME Association in the UK has copies: Myalgic Encephalomyelitis Association, P.O. Box 8, Stanford le Hope, Essex SS17 8EX.

    It is appalling that the world’s richest health research organization cannot muster an equitable funding response for a disease that affects so many, and has been on the radar for almost a century.

    Thank you Jennie for your ongoing commitment to our community!

  12. Patricia Wilson says:

    While this news is bad, your insights are acutely valuable.

    I’ve been ill 24 years now. Diagnosed at age 38, am now 62 and at age 60 moved into a senior apartment complex so I can transition to assisted daily living care when needed. It’s weird comparing my condition to folks in their late 80s and 90s but we are very comparable in activity levels and cognitive abilities.

    Waiting another decade or two for real progress in understanding and treating ME/CFS is heartbreaking to me.

    My congressional Rep., Dana Rohrabacher (CA38th) never bothered to respond to my advicacy that he sign onto Zoe Lofgren’s letter urging action on ME/CFS, but he is cheerleading for Trump’s anti-immigrant, anti-Islamic, anti-gun control, anti-reproductive rights agendas fulltime.

  13. deboruth says:

    Bless you Jenny. Thank you for your hard work. I look forward to part two.

  14. Jaime S says:

    Thank you as always, Jenny, for your incredible devotion and sleuthing.

  15. Pingback: The NIH Plan for ME is Dismal - #MEAction

  16. Debbie Iverson says:

    Thank you Jenny. Even bad news is welcome when it helps us focus on what needs fixing. As always, you put things clearly into perspective. I truly appreciate it.

  17. Anonymous says:

    Thank you. Jennie! Brilliant piece!
    To those of us who are in the severe camp, please hold on. We can’t lose hope! Maybe Koroshetz’s seeds will take years, but other seeds will bear fruit much more quickly.
    I love Terri’s posters — they are artistic and creative —- and remind me to take back the power! We are not powerless and we will find a way!

  18. Anonymous says:

    my congressman ask me “what is the NIH doing for ME/CFS?” I couldn’t answer accept to mention the Trans working group. I’m going to forward this article to him.

  19. Cindy Downey says:

    At base, I think an international class action lawsuit may be the only way to speed up governments and stop the discrimination; concerns aside about government research funding grinding to halt. “Democratic” countries have laws against discrimination, but they are blatantly ignored where ME and many other issues are concerned. As Cort says, a legal action would get noticed. The bar of proof keeps being raised. Just like other industry stalling tactics we have seen in the past. The ME crisis has gone on for decades. We have had enough scientific proof to treat ME as a very serious biomedical disease since at least 1969 with the WHO classification! New barriers keep being added – e.g. needing a new case definition, which will take years of research. It’s inconsistent (to put it nicely) that government bodies don’t fund based on disease burden. That is NOT scientific! As others have said, many more will be dead before governments get this in gear!

  20. What we can do now is ask every senator to become a cosponsor for Senate Resolution SR 508, by Markey of MA, that already has 7 cosponsors, but there is no limit to number of cosponsors – so lets seek 99 cosponsors, and give every senator a litmus test before the June 5th election:
    Are you:
    For M.E.
    Against ME

    If against ME, re-educate them until they change, or vote them out on Tuesday June 5th.

    Diane Feinstein in CA is now cosponsor, but need every CA ME advocate to ask Kamala Harris to also cosponsor SR 508 for ME.

    A list of current cosponsors is at: https://www.congress.gov/bill/115th-congress/senate-resolution/508/cosponsors

  21. You can contact Kamala Harris by e-mail or phone in DC and every CA office at:
    https://www.harris.senate.gov/contact

  22. Pingback: Vandaag op Perron4: De Fopspeen van de NIH

  23. Janet Flynt says:

    This comment may make some of you angry. I see things from a different vantage point because of my business and entrepreneurial background. I have worked bootstrapping a research center by marketing and conducting contract research projects, as a change agent getting safety standards implemented internationally in multiple product sectors, and as an angel investor in my own entrepreneurial company which I had to close due to this illness. I speak from the heart with experience. You are free to agree or disagree in part or in whole. Just know that I suffer along side of you. I do thank everyone for the progress so far.

    Lemma:
    If a convincing case had been made on ME/CFS we would have lots of funding by now.

    How do we make that convincing case? Borrowing the title of a good book – how do we do influence without authority?

    1. Change happens with a push and a pull. Yes pushing Congress. Yes pulling through UnRest and Books. We need pushes and pulls in more areas.
    2. A multi-tiered approach tends to work best – some beginnings are occurring but a strategic coordination among the various thrusts researchers, patients, government, philanthropists seems lacking.
    3. Where are the philanthropists who will match funds or better yet give to NIH? So NIH CFSAC can be strategic? Do we have a coordinated campaign to contact them? Wow how about someone doing what President Trump is doing? How about asking POTUS by requesting a group visit to the White House?
    4. Where are the promising mid-level researchers within NIH that see solving ME/CFS as a great challenge? Who are they and have we requested their championship to oversee intramural and extramural research projects?
    5. Where is the coordinated news thrusts that keep this topic in front of the press day in day out for the news media to pick up and to get national airtime. Me thinks thou doth protest too much. They are a start but we need lots of press releases. How about one regarding concerns about the blood supply? We don’t have a patient picture equivalent to a women with her throat rebuilt on the NIH website. We don’t have a picture of a real diseased brain from a patient with ME/CFS. I think anyone can post for free their personal story on the press sites -the release may or may not get picked up.
    6. Who is working Search Engine Optimization?
    7. Sick patients advocating for themselves only goes so far. How are we enlisting healthy volunteers?

    Again, I am not saying that progress hasn’t occurred – I just think we need more out of the box thinking and more energy to make this happen.

    • Jennie Spotila says:

      Your comment doesn’t make me angry. You ask really good questions, some of which have answers. Your key question is how do we influence without authority? We have the authority of our lived experiences and the research done so far. We use that authority to influence decisionmakers in positions of authority, especially authority over funding.

      1. Push/pull – Agreed.
      2. Multi-tier – Agreed. Strategic coordination across groups (including researchers) is necessary. There is more of that than there used to be, bit we still have a ways to go. And there are some situations where coordination is not possible or advisable. We are not monolithic, and we need diversity and independence.
      3. Philanthropists to match funds/give to NIH – A great deal of research, especially smaller studies, has been done with funding from donations. Multiple organizations have garnered support from philanthropic sources, and continue to fundraise. We had White House attention under Obama, which resulted in some pressure on NIH but nothing more than that.
      4. Mid-level researchers – your question seems focused on NIH, but it is a challenge outside NIH too.
      5. Media – We have so much more now than ever before, and I agree it needs to continue to grow. I do not understand your comments “Me thinks thou doth protest too much.”
      6. SEO – I’m not sure if you think this needs to be done by organizations or more broadly?
      7. Healthy volunteers – MEAction has done this better than anyone.

Comments are closed.