All The Time and None At All

Dr. Francis Collins, in answering a question about ME research on April 20th, said that NIH recognizes and empathizes with our suffering and our “frustration that so little is known.” Then he dropped some knowledge.

Dr. Collins said, “Research, done correctly, takes time.” Thank you, Captain Obvious.

We KNOW research takes time, Dr. Collins. That is why we have been pleading with NIH to invest appropriately in ME research for more than thirty years.

We have felt every second of those years go by, as the sands dropped grain by grain through the hourglass like so many drops of blood. I have personally watched the last 8,603 days (and still counting) of my life dissolve behind me, along with the dreams and plans of the healthy twenty-six year old woman I was before ME derailed my life.

In fact, there has already been plenty of time. Time for me to contemplate the wreckage of my life and try to build something new. And plenty of time for that research – being done correctly – to find some answers. Can you imagine, Dr. Collins, if there had been more research over the last 8,603 days? Don’t you think that more would be known?

Of course, research – done correctly – takes more than time. It takes researchers and research subjects. It takes money. But you know that, don’t you? Because when the President asked you in March 2017 to direct the resources of NIH towards the opioid abuse epidemic, you didn’t tell him that you empathized with his frustration and that it would take time. No, you formed thirty new partnerships in 10 months to find new addiction treatments and alternatives to opioids.

And last month, when Congress gave NIH an extra $3 billion over last year’s funding (instead of the 22% cut proposed by that same White House), you didn’t say No thanks, we just need more time. Not at all. Instead you personally thanked the House Appropriations Subcommittee for the “incredible increase,” as you assured them that, “NIH has immediately set to work to invest those additional resources into groundbreaking research.”

I am not suggesting you should ever bite the hand that feeds you, Dr. Collins. You would not have lasted a quarter century at NIH if you did. But I don’t think you ask every person with a disease to simply bide her remaining time on earth while research can be done correctly.

In one interview, you talked about your long-term family friend from Michigan who is participating in an NIH trial. She has survived more than three years with glioblastoma thanks to immunotherapy. You said, “She’s never been herself since the surgery and the radiation, but she’s alive. I don’t know how to balance those things off. Her husband thinks it’s great that she’s alive, and I can’t argue with that.”

I can think of some people who would be grateful if their loved ones with ME were still alive. Did you tell your friend Dr. Ian Lipkin that Vanessa Li should have drawn comfort from the fact that research was being done correctly, even if it was taking time? Would you say that to the family of my friend Anne Ortegren, a woman who understood that science requires more than time? I can also think of some people with ME who might run out of time. Have you told your friend Dr. Ron Davis that you empathize with his family’s suffering and frustration, but after all, research must be done correctly and that takes time?

So how about we cut the condescending crap. We all know research takes time, as well as money and researchers and innovative thinking. For most of the last thirty years, NIH has only offered us time to watch the grass grow around the ME sinkhole. NIH has had plenty of time, while I have had none at all.

Don’t pat my hand and tell me you care. Don’t tell me that you empathize with my suffering while NIH does a tiny bit of research – correctly, of course.

Stop wasting my time. Do your job.

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58 Responses to All The Time and None At All

  1. It’s so unlikely that he’ll see this and respond correctly – grrr!

    People who are not weathervanes don’t keep their jobs. You are so right about the opioid crisis, which is more about lack of hope and jobs than it is about getting high.

    I’m tired of waiting my turn because I’m too ill to do anything about it and must depend on the ‘kindness’ of government.

  2. robertwijbenga says:

    wow…. would that he’d read it….

  3. Janet Dafoe says:

    Great letter! Nail on his head! Thank you, Jennie! I hope he sees it. I’m going to ask Rin to email it to him.

  4. Tina says:

    So well said. I have been sick for 10 years. I just woke up one day unable to lead a normal life and the medical community just yawned. After all, I was just a stay at home wife and mother. I wasn’t even losing a job, just my ability to participate in life. In two weeks my oldest graduates from high school and my children cannot remember me not being ill. They do not know the person I was before the “rebuilding.”

    There have been just enough crumbs to keep me going; the IOM report, Ron Davis, etc. You think the needle is finally going to move, that doctors will start believing you. But nothing seems to change.

    • Jennie Spotila says:

      Thank you, Tina. I agree that our ability to participate in life doesn’t seem to rate very highly.

    • Tina says:

      I would also like to add that Cort Johnson has been a part of the “crumbs” that keep me going. He is tirelessly positive.

      For me Jennie represents the “fire in the belly.” She keeps it real, very real. 🙂

  5. Mary Dimmock says:

    Great post, Jennie. Thank you!

    Reminds me of this quote from a Brown University professor regarding Gulf War Illness

    “Although science does indeed take time, it takes varying lengths of time depending on who the stakeholders are in the formation of the dominant epidemiological paradigm and what sorts of institutional, political, social and other barriers impede challenges to [that paradigm]”

  6. Denise says:

    Dr.Collins – The time is NOW!!

  7. Cort R Johnson says:

    Wow. Very powerful!

    Well said.

    ME/CFS researchers needsto assist us here as well. According to a recent FOIA ME/CFS researchers submitted all of 12 research grant applications to the CFS SEP over the past year. That’s just incredibly pitiful! I don’t know what to do with that.

    We need support from both ends. We could dearly use a RFA that funds individual researchers and we need researchers to submit applications so that they can get funded. I’m worried that the NIH is in a chicken and the egg situation. They’re not going to fund RFA’s until they see more interest and they won’t get more interest until they fund RFA’s. Hopefully that’s not the case. They got a good response for the Research Centers grant.

    My analysis of past applications did not, by the way, indicate that ME/CFS grant applications were approved at lower rates than the norm.

    Hopefully we will get more applications in as the losers in the Research Centers contest send theirs in. In the meantime I think a push for an RFA to stimulate individual researchers is in order.

    • Jennie Spotila says:

      The chicken and egg situation is of NIH’s own making. I’m sure you remember Dr. Glaser’s powerful comments at an old CFSAC meeting. I agree that we need an RFA for individual investigator projects. But there are many more things that NIH can and DOES do to stimulate interest in smaller fields. They have not brought all their tools to the table, and the pace of their plan is too damn slow.

    • jimells says:

      Why should researchers waste their limited resources on submitting applications when NIH managers have stated on multiple public occasions that they have a policy of rejecting 88% of the applications?

      The NIH campaign to improve their image in regards to this disease has been extremely successful. Their public relations people should be proud, I suppose. Meanwhile the Policy of No Research for ME continues and patients continue to suffer and die.

      I wonder if the public relations people are proud of that, too.

  8. Chris Heppner says:

    Great post, Jennie! Your command of just the right tone is superb, as always.

  9. Stephanie Davies says:

    Amazing , thank you Jenny.

    9,125 DAYS here!

  10. Mary says:

    Jennie – Such good words…. I am 75 now and time is really running out after nearly 20 years of CFS/ME. I too will never have these years again.

    I hope that the words do reach Dr. Collins. He needs to hear directly from the page the force, the anger and the sheer frustration with which you write so effectively.

    So glad that you wrote this piece.

    Mary uk

  11. Nancy Sadja says:

    Thank you Jennie for speaking up for those of us in this very large yet grossly and negligently underfunded community. Having ME is truly being invisible to the medical community at large and the NIH in particular. Thank you for demanding that we be seen!

  12. Eimear says:

    Jennifer, excellent piece and so true, God can the man not just do more, what does it take.

    • Jennie Spotila says:

      Yes, what will it take?! Asking us to sit patiently while they crawl along like snails is not acceptable.

  13. billie moore says:

    Time looks infinite to those who are healthy. They do NOT feel our pain.

    A letter I wrote along these lines will be held until mid-May. Hope everyone will sign and send individually.

  14. Kenneth J. Friedman, Ph.D. says:

    It took approximately 10 years for the Federal Government to discover AIDS and develop a treatment for it. It was only partly a matter of time. Other factors included, a sufficient amount of funding to solve the problem, the creation of the perception that the illness was a crisis that needed to be solved, the development of prestige for anyone working on the disease, and the acceptance by both the biomedical and academic communities that investigators of this disease were performing acceptable work and should be permitted to do so.

    ME/CFS has not been granted these characteristics. Not only has funding been dismal but it remains dismal. The latest N.I.H. increase is but a fraction of what the CFSAC requested. The CFSAC requested 12 twelve centers funded at a minimum of $2 million each. Even that is not what I wrote in the justification for centers. Due to the difficulty of patients accessing care, I asked for one center in each state. That seemed reasonable to me then, and seems reasonable to me now!

    As for researchers performing research on ME/CFS, the numbers are far fewer than needed. It is not only a matter of money. It is a matter of researchers being permitted to do the work and for being appropriately compensated. Those issues were presented at the N.I.H. State of Knowledge Workshop in 2011, and I have yet to see any attempt at resolving those issues: clinicians being told by their chairpersons not to see such patients, researchers being told that such research will not be accepted for promotions, or, in my case, banned from the workplace as, “unprofessional.”

    Until all these issues are addressed, progress in understanding the etiology of ME/CFS will be slow, there will be little incentive for drug development, and the thought of a cure will remain just that: a thought.

    Advocates need to broaden their domain of advocacy if they want to see results.

  15. Bazia says:

    👊🏼U nailed it!
    Wish I had more energy to expand!
    But at least I have time.🤢
    Thank you!

  16. CathK says:

    #TimesUp

  17. Samuel says:

    kenneth, do you have specific actions in mind for these problems that you think can be done?

    mlk wrote this in longhand from a jail: “I have almost reached the regrettable conclusion that the Negro’s great stumbling block in his stride toward freedom is not the White Citizen’s Counciler or the Ku Klux Klanner, but the white moderate, who is more devoted to “order” than to justice; who prefers a negative peace which is the absence of tension to a positive peace which is the presence of justice”

    officials seek that negative peace, but could be an active part of the solution. the story of nih’s response to my open letter is here [today’s post]: http://thekafkapandemic.blogspot.com/2018/04/nih-reply-to-my-open-letter-and-legal_24.html

  18. geoffrey keith brown says:

    i cannot understand when people say little is known about Myalgic Encephalomyelitis,Ramsey – Dowsett-richardson-Byron Hyde and Jodi Bassett’s book explains it all with the exception of information about ion channels not available in 1985 this can be found on the NCNED site.It is only when the nothing CFS term is added that confusion reigns people like xxxxxxx use this confusion to make money, it sickens me

    • Jennie Spotila says:

      Edited to remove an individual’s name. Please read my Blog Policies. No personal attacks here. Thank you!

  19. Pingback: All The Time And None At All – The York ME Community

  20. Jim Mills says:

    Jennie,
    Thank you for your powerful statement expressing the frustration that we all feel.
    I am writing to Dr. Collins, Dr. Koroshetz, Dr. Whittemore, and Dr. Nath expressing my personal frustration and enclosing a copy of this post.
    I am going to ask them to read, reflect and act on your words.

  21. Anil van der Zee says:

    Sublime!

  22. Matina says:

    Like I always tell you…You Rock! you rock!!!!

    Great example of opioid crisis and let’s not forget about the cancer moonshot. (Just FYI). Sorry not doing so good wordfinding stinks.

    And I would like to add studying one patient at a time is not standard clinical trial practice. And not being able to meet recruitment is just outright unjustifiable! Yes recruitment is hard in general but not for this tiny study. It’s all unacceptable

    So thank you for your rant! Bc know one should have to live like this! Oh and to the point of his friends cancer! The point is they have the best care and they have treatments to fight! We don’t! As you know.. so thank you as always!-

  23. deboruth says:

    Loud and wide, Dr. Francis Collins for years has proclaimed himself an especially devoted Christian. I don’t understand. Is sabotaging research progress with inattention, disinterest, and fakery — for a disease that kills more Americans annually than AIDS — the way of a Christian? Is denying the vast base of knowledge that waits to be built on, in order to mislead politicians, journalists and public from seeing truth and acting on it — was this what Christ taught? To withdraw funds from a brilliant scientist, one who is making huge advances for mankind, in an act of vengeance — because he spoke up for the sick and the weak — is this how one serves the Lord?

  24. Laurie P says:

    Thank you, Jennie, for this, another much needed blog, among all of the much need blogs that you’ve written for us over so many years of advocacy.

    Dr. Collins needs to imagine having 10 years crossed off of his Curriculum Vitae. He needs to imagine having 20 years crossed off of it. He needs to imagine having 30 years or more crossed off of it. Dr. Collins needs to imagine having his wife crossed off of it and his children crossed off of it.

    Dr. Collins needs to imagine his work and the fruits of his work and the joys of what his health has allowed him to do as having NEVER EXISTED for decades or maybe even since childhood.

    Dr. Collins needs to imagine decade after decade after decade waiting for medical care that never comes to ease his profound unending suffering, help him to function, and relieve his caretakers; if he is fortunate enough to have any. He needs to imagine waiting decade after decade after decade for an end to the stigma of disbelief that the health care system and puppet media have created. He needs to imagine waiting at home, or in a nursing home, or hospital, with years of fighting for meager disability benefits and health insurance benefits, or being homeless, institutionalized or already dead from ME.

    As Director of the NIH, Dr. Collins will have to answer for many things, including how the lack of research, discrimination, sexism, neglect, abuse and stigmatization of people with ME could have happened. Dr. Collins will have to answer for “Team Tired”, researchers who believe people with ME have a psychosomatic illness and are catastrophizing, and an invited speaker who believes ME is a “delusional somatization”. Dr. Collins will have to answer for all these things and so much more.

    At the resent “FY 2019 House of Representatives Budget Hearing – National Institutes of Health” https://directorsblog.nih.gov/2018/04/17/fy-2019-house-of-representatives-budget-hearing-national-institutes-of-health/, ME was never even mentioned. While certainly not all diseases were mentioned, this was a particularly egregious oversight since we had a terrible flu season this year; which was discussed, and most people who develop ME; most of the estimated 1 – 2.5 million women, men and children in the United States, become sick after an infection with a flu-like illness or another infectious illness.

    The attention the millions of missing people with ME are now getting is only going to continue to grow. Furthermore, David Tuller has surpassed his crowdfunding goal and will be able to do much more reporting and outreach for another year. He did a fabulous job in his recent TV appearance and I hope that more TV appearances will follow. PACE-Gate is now at a level where Member of Parliament, Carol Monaghan, said about the PACE trial, “I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century”.

    The coming years are going to bring much inquiry and investigation; and hopefully many major motion pictures, about how people with ME have been treated. Dr. Collins will not be able to escape his part in creating and perpetuating this PUBLIC HEALTH CRISIS. Dr. Collins can change things for us now or he in his time as Director of the NIH can be permanently written into history as part of the overall scandal.

  25. Alex Young aka alex3619 says:

    When first facing a probable ME outbreak, the LA County Hospital outbreak of 1932-34, the US government responded with a long, well researched report for its day. When the CDC investigated the 1984 Lake Tahoe outbreak, at least one of the investigators took time out to have a good time. The US government CAN get it right, they have just failed to do so. This is not so much about the science, as it is about the medical politics. It goes far beyond just medical politics though, but nobody has done an in-depth analysis or investigation of other factors including changing ideologies in economics and government. There are more factors then just those of course, but I don’t want to get into those here.

    This letter articulates what I hear from patients all the time. Its not an abnormal position, its the most common position I hear. Thank you, Jennie.

  26. Kathy D. says:

    You rock, Jennie! Right on target as always!

    This post should be made into a flier and given out at all May 12 Millions Missing events.

    I’m trying to figure out what to do with it in addition to sending it to my ME/CFS Phone Support Group.

    I so wish we could have an ACT-UP. The person who wrote about getting funding for AIDS omitted credit to ACT-UP. In my city and in D.C. and in California, that group did everything to get research and a treatment found. It was intense. It was good. It got the attention that it needed to get the work done.

    Thanks, Jennie.

  27. Simon McGrath says:

    “when the President asked you in March 2017 to direct the resources of NIH towards the opioid abuse epidemic, you didn’t tell him that you empathized with his frustration and that it would take time. No, you formed thirty new partnerships in 10 months to find new addiction treatments and alternatives to opioids.”

    That’s a very powerful point. The question is:, how can we change things? Brian asked very nicely, net had some of that. Patients had been taking the NIH to task the years, and maybe that’s had some effect as well. Certainly, the NIH now has a bio medical perspective and recognises that there is a big problem.

    But it is clearly unable or I’m willing to commit any more funds. I’m assuming the President isn’t going to have a word in Collins’s ear , so is lobbying Congress the answer? I know several people have suggested it. I’d be very interested to hear what you think.

    • Jennie Spotila says:

      There is an ongoing effort to lobby Congress underway. Different groups are coming at it in different ways, which is excellent. Lobbying Congress is an essential piece of this effort.

      But I also think that pressuring Dr. Collins is a piece of the effort as well. Brian’s open letter was excellent, and clearly had an effect. But it was effective in part because his science journalist colleagues picked up the story. I lost count of the number of tweets and retweets of his letter, tagging Dr. Collins. So Collins HAD to respond, especially in the wake of the IOM and P2P reports.

      We cannot let up on Collins now. What he has done is not enough. He has the power to do more. He should do more. We have to require him to do more.

  28. Lisa says:

    Bravo! I couldn’t agree more. Thank you for the sacrifices you make to keep us informed.

  29. Noomi says:

    Thank you. Last week another one of our Swedish ME-sufferers died with the help of a clinic in Switzerland. We don’t have time for this bullshit. We need adequate founding and hope for a bettet future now!

  30. jimells says:

    The Policy of No Research was established long before Collins was promoted to NIH Director. Like any good bureaucrat, he knows not to upset the apple cart. It doesn’t matter how many angry emails we send him. After all, that’s what the Delete Button is for!

    In this case, the apple cart is owned by the disability insurers. As long as the current policy saves them from paying out billions to us “useless eaters”, it won’t change. UNUM is a known corporate criminal and has been forced to pay millions in improperly denied benefits, but is still allowed to cut off ME patients after two years by claiming that ME is a “psychological disease”.

    We desperately need a tobacco industry style class action against the insurers. Over the past few years researchers and journalists have joined our struggle. Now it’s time for the lawyers to step up (and I don’t mean lawyers with ME).

  31. Laurie P says:

    As of today, I’ve been sick for 35 years. That’s 12,775 days that I’ve been sick because of this PUBLIC HEALTH SCANDAL.

    I was a horse owner who rode dressage and competed, a pet owner, a bicyclist, a hatha yoga practitioner, a hiker, a camper, a photographer with my own darkroom, a wife, a homeowner, a graduate student and so much more.

    At the rate the NIH and CDC are going, I’ll have to wait for science to figure out how to resurrect the dead and invent a time machine to transport me back to the life I should be living now instead of this endless bedridden suffering.

    People with ME deserve EQUALITY and JUSTICE.

    • Mary says:

      Thats just how I feel too :-))…… Oh well – Today we have sunshine in the south of England and it is a beautiful morning.

  32. marcie myers says:

    Did he respond to your plea for action? Let me guess. Of course he didn’t. He never does which makes your excellent letter and its points moot. Grrrrrr. MEAction is planning another stage show somewhere. And SOLVE? I honestly don’t know what they’re doing. We have more orgs than ever yet lack modules for medical students agendas. This very task was assigned to Dr. Elizabeth Unger some years ago by Dr. Friedan during a CFSAC meeting. And I have proposed a well thought out PSA now that we have diagnostic criteria and need a non-profit org to back it, both MEAction and SOLVE stated they had too many irons in the fire already. I wasn’t even asking them to do the work; I simply need a “backer”. And, so like you, 30 years later here I lie, wondering what I might have become had I not lost the developmental stage known as middle age. I approach my senior years knowing one thing for sure…not in my lifetime. How sad. Thank you for your always brilliant analysis. Marcie

    • billie moore says:

      Marcie, would you be able to find the date (and time if possible) of that statement by Friedan to Unger about the medical student modules? That could be very useful to those working on getting better medical education to med students and practitioners.
      Thank you.

      And Tina, where do you live? And what medical facility do you go to – or do you go to private practioners? As Jennie says, WOW! Not only do your doctors know about ME, they know sources for information!!!

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