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NIH’s Dismissive Response to Mary Gelpi’s 50K Petition

Last month, Mary Gelpi sent a petition with more than 50,000 signatures to the director of the U.S. National Institutes of Health (NIH), Francis Collins, asking the NIH to increase funding for ME/CFS to 100 million annually.

Mary’s friend, Matt Tyler, who sent a letter accompanying the petition, received the response below from Walter J. Koroshetz, M.D., who chairs the Trans-NIH ME/CFS Research Working Group. In his response, Koroshetz fails to acknowledge the scale of the health crisis nor commit to increasing funding, but rather points back to the current work and processes that the NIH is doing for ME/CFS, which is far from enough.

Mary published the post below on Change.org to update the community. She is continuing to collect signatures. Sign the petition.

Hi friends,

As usual, I apologize for taking so long to post this update. It’s been a very rough Fall. Strangely I crashed roughly a week after sending the package. It’s like I have some disease that continuously knocks me down as soon as I begin to improve and it causes this chronic pain and clouds my brain and makes completing simple tasks obnoxiously difficult. Just completing that sentence took two weeks! Good grief.

So, the important stuff. The NIH responded to our package. Great! I feel the need to premise my posting their reply by pointing out the response was sent to Matt (by email), not me (LOSER). I do get a shout out when they give an apology on behalf of hearing that Matt has a friend with MECFS. She is me! Me is she! Anyway, I’ll save further elaborations for the end. As you’re about to see, there’s a lot to digest here. But I just wanted to give credit where it’s due, be honest about how this correspondence occurred and provide yall with the details. I’ll begin by posting the letter Matt wrote (rubber-banded to mine) followed by the response from the NIH. Here goes.

Matt’s Letter

Dear Mr. Collins,

My name is Matt Tyler. Until just a few years ago, I had never heard of anything called Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. And that’s kind of what’s so crazy about the disease. It’s hidden from the majority of us. It wasn’t until I ran into an acquaintance from my younger years, someone who had sort of disappeared from my circle of friends when I was in my mid-twenties. I just assumed she had relocated, had become consumed with beginning a family or a career. You know, normal late-twenties life stuff. Turns out she was dealing with ME/CFS. She had faded into the background not because she had other things in the background to do, but because she was forced to recoil into a bed by a mysterious disease that most of us had never heard of.

I’ve grown very close to her recently and in turn have grown very close to the life that suffering from Myalgic Encephalomyelitis brings with it.  She’s not even on the most severe end of the spectrum, but it still baffles me how she’s able to get up every day (most days, some days just have to involve being in bed all day) and deal with the pain and exhaustion that she feels just because she’s awake. Because she made a sandwich and then walked to the couch.  Because she needed to bathe. And she never complains or whines about her circumstance. She has every right to, but instead she fights however she can. She does things like create the included petition. She exerts the very limited supply of energy she has to give a voice and some hope to the millions of people suffering with this debilitating disease. The millions of people who have been robbed of years of their lives.

You once lived a life where you searched for hidden genes responsible for these types of things. I remember reading once that you would put a sticker on your motorcycle helmet every time you discovered a gene responsible for a disease. I’m sure it was a proud moment applying the sticker representing Cystic Fibrosis. I know that’s not the life you live anymore. Now you get to direct and inspire young versions of yourself. Young scientists trying to make a change in the world. That’s why we need your help. Your influence. Your voice.

The reason for this petition is simple: Allocate more funds toward the research of Myalgic Encephalomyelitis. That’s what we are asking. That’s what the people behind the more than 50,000 signatures are requesting. But I’m sure you understand more so than most of us that by doing that, you are immediately impacting all those millions of people who have been pushed into shadows. If this increased funding happens, not only will the impact happen long term with better diagnostic tools and possible treatments, but you’ll give the people suffering an injection of hope. Hope that they can return to their jobs. Hope that the life they once had and enjoyed is not forever lost. Someone with as much prominence in the scientific world as you making a decision to increase research funding and speaking out about ME/CFS spreads the word about the disease. It might inspire some grad student somewhere to decide this is going to be something they want to attempt to tackle. Some blossoming scientist might decide they want to put a dent in or even end this terrible disease.

I understand that giving more funds to ME/CFS research likely means another diseases’ funding might be reduced. I don’t envy you having to make those decisions. But I can say this. I would imagine in the world where your career exists, the phrase “return on investment” is not foreign. I run a small family business and it’s something I have to consider almost daily. I’m sure it’s a much more difficult metric to calculate in the domain where you must apply it. But I’ll leave you with this: any additional money put towards ME/CFS research, especially if some sort of formal announcement or press release is attached, will yield an exponentially higher return on investment than most other diseases. Because outside of simply robbing people of their careers, health and happiness, ME/CFS robs people of hope. And a life without hope is no life at all.

You have the chance to not only bring about scientific change to help millions of people in need, but the chance to reinvigorate them with hope.

Thank you for your time,

Matt Tyler

P.S.  If you do decide to do what is being asked for in the petition, I will design, make and hand deliver a sticker representing ME/CFS for your motorcycle helmet in hopes that in the very near future you’ll be able to apply it.

The NIH Response

Dear Mr. Tyler:

Thank you for your letter to National Institutes of Health (NIH) Director Dr. Francis S. Collins concerning myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).  We appreciate your kind words about his work.  Dr. Collins requested that I respond to you on his behalf.

I am sorry to learn that a friend of yours has ME/CFS.  Your description of her experiences underscores the devastating effects of this disease.  With your letter, you included a petition that asked the NIH to increase funding for ME/CFS research to $100 million.

We at the NIH understand the necessity of improving diagnostics and finding effective therapies for ME/CFS as quickly as possible.  We agree that there is a tremendous need for quality research in ME/CFS.  It may be helpful for you to know that the NIH system is open for any researchers to submit their best ideas for funding excellent science in ME/CFS.  The NIH grant system primarily funds work performed in individual laboratories or clinics by teams of scientists working at academic, medical, and other biomedical research institutions, including industry.  Individual investigators interested in pursuing ME/CFS research can submit detailed proposals through their institutions to answer a broad range of research questions.  Proposals can be submitted three times per year.  Proposed projects undergo a rigorous peer review process at the NIH and are then considered for funding.  Investigators receive critiques of their proposals and have the option to revise them and resubmit.

The Trans-NIH ME/CFS Working Group recognizes the acute need to cultivate more research and investigators to work on ME/CFS.  In pursuit of this goal, NIH plans to bring scientists together with patients and ME/CFS advocacy groups in April 2019 to discuss the opportunities in ME/CFS research.  We also plan a meeting intended to engage early-stage career scientists in ME/CFS.  More information about these meetings is available at https://www.nih.gov/mecfs/events

In addition, the NIH is conducting a study on ME/CFS at the NIH Clinical Center in Bethesda, Maryland.  This study, led by renowned neuroimmunologist Dr. Avindra Nath, is exploring the clinical and biological characteristics of ME/CFS following a probable infection to improve understanding of the disease’s cause and progression.  Recruitment of healthy volunteers and people with ME/CFS is underway.  The study is currently recruiting patients who have had ME/CFS for 5 years or fewer.  You can read about the study at this website:  https://mecfs.ctss.nih.gov/index.html  The following site provides a contact email address and the telephone number for the NIH’s Office of Patient Recruitment:  https://mecfs.ctss.nih.gov/contact.html

Please be aware that the NIH generally does not stipulate the amount of funds for specific diseases.  There have been times when Congress provided funds to the NIH for specific purposes, but those instances have been rare—HIV, cancer, Alzheimer’s disease, and more recently, the crisis resulting from opioid overuse disorder.  In special cases there are NIH-driven exceptions, for example, when one or more NIH Institutes set aside funds by issuing a Request for Applications (RFA).  The RFAs for the ME/CFS Collaborative Research Centers (CRCs) and Data Management and Coordinating Center (DMCC) are examples.

As a result of the RFAs, in September 2017, the NIH awarded four grants to support the creation of a ME/CFS research consortium composed of three CRCs and a DMCC.  These centers will help to build a strong foundation for expanding research on ME/CFS.  The CRCs will each conduct independent research but will also collaborate on several projects, forming a network to help advance knowledge on ME/CFS.  The data will be managed by the DMCC and will be shared among researchers within the CRCs and more broadly with the research community.  You can read about the awards at https://www.nih.gov/news-events/news-releases/nih-announces-centers-myalgic-encephalomyelitis-chronic-fatigue-syndrome-research  We hope that the new centers and other NIH efforts will attract researchers from other areas to propose research on ME/CFS and increase the number of young investigators entering the field.

The awards are just one result of the NIH’s efforts to advance research on ME/CFS with the goals of identifying its cause and finding biomarkers to study disease progression and monitor response to treatment.  You can read about these plans in the following NIH news article from October 2015:  https://www.nih.gov/news-events/news-releases/nih-takes-action-bolster-research-myalgic-encephalomyelitis/chronic-fatigue-syndrome  As part of these actions, the NIH has renewed the focus and efforts of the Trans-NIH ME/CFS Working Group, which is carefully exploring the gaps in our knowledge and identifying the opportunities for research on ME/CFS.  The Working Group will continue to discuss next steps to attract more researchers to this field and expand research on this disease.  You may wish to visit the Trans-NIH ME/CFS Working Group website at www.nih.gov/mecfs  The NIH continues to post research funding opportunities related to ME/CFS in the “Funding” section of that site.  In addition, the information at the “Resources” section of the site may be helpful.  If you would like to receive periodic updates about NIH activities related to ME/CFS via email, please go to that website and click on the link to “Join our listserv” at the bottom of the left sidebar.  The NIH hosts regular telebriefings with the ME/CFS community to provide updates on our activities and answer questions.  Announcements about upcoming telebriefings are emailed via the listserv.

In addition, the National Institute of Neurological Disorders and Stroke, which is the lead Institute for the Trans-NIH ME/CFS Working Group along with the National Institute of Allergy and Infectious Diseases, has recently formed a working group of its advisory council to provide scientific guidance on how best to advance ME/CFS research at NIH.  The working group includes basic scientists, clinicians, Federal partners, advocates, and people with ME/CFS.

We hope that the steps the NIH has taken over the past 2 years and the future progress of the Centers will grow into a major scientific effort in ME/CFS research funded by grants submitted to NIH.  We look forward to working with the community to gain further insights into ME/CFS that will lead to the development of effective treatments and improve the quality of life for people coping with this disease.

Sincerely,

Walter J. Koroshetz, M.D.

Chair, Trans-NIH ME/CFS Research Working Group

And there we have it. So, what do we think? 

I’ve read it a dozen times. Maybe more. I started out optimistic, reaching far down for hope that there was something substantial or new here. But every read thereafter I became more enlightened and discouraged by what I was to ultimately understand. Trust me, I was not expecting a letter that said, “Yeah, this seem legit. OK, we’ll put up the hundred mil kid. Well, good luck. Bye!” But I think I was expecting more acknowledgment of MECFS as a crisis. This felt more like a brushing the petition under the rug, and a brochure for the things we already knew the NIH was doing.

At first I found it a bit odd that they wrote to Matt and not to both of us. But as Koroshetz stated, Collins instructed him to write a letter to Matt specifically. Is it strange not to include or also address the author of the petition that you’re writing about? Not to acknowledge the 50,000 people who signed it, or the thousands who shared their feedback and stories, or the millions who are suffering? The millions missing?

If my email address was too difficult to find, fine. I truly was glad a response was sent at all. But I also think, OK, the guy then apologizes to Matt for his friend with MECFS—does he not know she is the petition author? Her name is on the 350 pill bottles adorning the 1,300 pages of signatures in the box. I just can’t figure out if it was an oversight or on purpose. I guess it doesn’t matter. But then I think, maybe it does matter. Not because I care about a name mention, I can’t emphasize that enough. But because this petition is ours. As in the millions of dismissed sick people fighting for our lives and their loved ones. The story I share on the petition helps represent those people in this country and all over the world who have lost their livelihood. This is why a half-hearted apology in a letter written strictly to Matt about his friend somehow just feels tone-deaf.

Lastly, I can’t help but feel a kick in the girl nads when I read paragraph six. The one that starts with Please be aware that the NIH generally does not stipulate the amount of funds for specific diseases. There have been times when Congress provided funds to the NIH for specific purposes, but those instances have been rare—HIV, cancer, Alzheimer’s disease, and more recently, the crisis resulting from opioid overuse disorder. 

To say they “generally don’t stipulate the amount of funds for diseases” lacks any kind of serious meaning. There is nothing general about MECFS or the circumstances surrounding it. Unless it’s the norm for their agency to deal with a disease affecting 3 million people with no cure, no FDA treatments, a general medical establishment in the dark about even the name and a literal handful of specialists who know how to treat it exist, then we can agree this situation is rare. Oh, and it’s costing us between 20-24 billion a year economically. Call it general, but follow up with the words health crisis behind it.  Surprisingly this disease is not technically rare, but it’s medical, historical, and political reality are. So there’s not a lot of meaning in “general speaking.” Most petitions aren’t written because generally things are being handled well in a situation we might call normal.

But wait. He follows this statement of what they generally don’t do with, well, sometimes we dobut only in rare instances. OK…so you do then. But the implication here is obvious. We do this, but only when the situation is considered dire or a crisis. Yours isn’t. It’s clear here that MECFS patients don’t fit their criteria for rare or dire, but patients, specialists and advocates know, no other disease in the last three decades compares with the remarkable neglect of funding and research for a disease with the numbers that MECFS holds across the board.

To me, he said everything in that letter with that one paragraph. They don’t see the reality surrounding MECFS as a health crisis, even though it could be defined in no better terms. In other words, they don’t see the reality of the disease or the millions suffering from it with any urgency at all. Despite our quality of life being calculated as lower than those with Cancer and AIDS, both of these diseases make the rare instances list deserving of the action we’re calling for. But for us, no cigar.

The crisis resulting from opioid overuse is another rare instance he includes. As a chronic pain patient due to MECFS, this was a second kick in gut. For one thing, it’s easier for me to buy ten guns, heroine, or meth than it is to fill my legal prescription due to the legal scrutiny cemented for doctors and patients by people who chose to abuse this medicine. Secondly, why does this qualify as a crisis but not MECFS? One kills you 6 feet under, the other kills you but leaves you above ground. There’s a reason MECFS is referred to as a living death. I suppose this is the difference.

It feels as though he’s saying “These other diseases and disorders are worth well more than what you’re asking, but what you’re describing, well, that’s just going to take time. And far, far, far, fewer funds. We did stuff in 2015 and 2017! We’ve got meetings scheduled in 2019 and committees we’re making!” Why then, I wonder, was the CFS Advisory Committee slashed in September without real reason or warning after 15 years? So it’s great to have a Trans-NIH ME/CFS Working Group, but didn’t you already have that? Now we’re starting over again? Might this be why 40 years have passed, and we are still waiting on a treatment? We are still sick.

I apologize for sounding bitter and my intention is not to spread a hopeless message. I am actually really happy they responded because it tells us in their own words just how much perspective is lacking on their end in regards to how they perceive MECFS. I try to look at this response purely as information. And I also see it as concrete evidence to keep fighting, keep pushing, and not take no for an answer or accept a brochure-toned letter about all the good things they’re doing as enough. It’s not enough. I hoped for some kind of possible optimistic news that I might be able to infuse into the community by way of an NIH reply, but that was my romantic side and I forget I’m dealing in the political domain. It doesn’t help that funding for MECFS actually declined this year, so all the talk about RFA’s and implementing programs to help fuel progress is really hard to take seriously when the funding at the end of a year speaks for itself.

I still believe the NIH can help us, seriously, and I said this much in my letter to Collins. It was extremely positive and repeatedly punctuated by my belief in his ability to help solve this thing. This challenge was also an opportunity, I reiterated, and expressed my firm faith that he was up to the task. This convoluted mess was long and twisted and not his fault, but it had, for whatever reason, landed in his lap, and so now a real chance for change presented itself. I told him again I believed he could help make the needed changes, and I was reaching out to him as an ally. (I will continue to do so.) I expressed that I wanted to help and was available to be a part of any effort aimed at progressing this work forward. But, as they say, no dice.

Maybe he didn’t like my letter, I’m not really sure. And I acknowledge that he’s not necessarily in an easy place either. All of this just shows me the work we have to keep doing: We have to continue speaking up, telling our stories, shouting if we have to, fighting for justice and being there for one another while we endure the battle. It’s easy to get discouraged and I fight it all the time. But I have to believe in the power of our voices, and I’m not going to give up, ever, on prodding these institutions with Prius-sized packages, growing the petition, songs, letters, singing telegrams in pink gorilla suits, or whatever it is. We’ll keep fighting until we can rest.  Clearly, we’ve got further to go, and that’s OK. Onward we march! (Or lie down. I mean I’m lying down right now…)

I could go on analyzing each paragraph but everything hurts and I need to collapse a while. My eyes hurt from rolling. Kidding. These are just my initial thoughts and it’s not unlikely I might be missing something.

Thank you all. Thank you Matt—an incredible example of how important healthy loved ones and allies are who help fight on behalf of the sick. We need you! Everyone please feel free to leave your response to the letter below. Perhaps I’ve missed out on seeing something more…hopeful? Either way, it’s good to hear from all of you. I will keep fighting as so many others are, and together, we’ll get there.

Health, Hope, and Happy Holidays, Healthy or Sick 🙂

Mary, Monty & Co

***

P.S. I am on Twitter @fibromyawesome

The NIH is on Twitter @NIH 

Francis Collins is on Twitter @NIHDirector 

If you found that this response and the actions of the NIH in 2018 in general to be #notgoodenough I think we need to let him/them know that. In my opinion, this reply to the petition wasn’t. I’m not stopping until I see the all so rare Stipulation of Funds of #100MElliondollars go toward MECFS Research and I’d like them to know that the #MECFS voices are only going to grow louder, just so we’re clear. We’re not gradually going to disappear, the way we did from our lives. If you liked the letter, you can let them know that on Twitter too 🙂

As always, I can be contacted by email and am always open to ideas/input at theothergelpi@gmail.com. Mr. Collins, Mr. Koroshetz, you can reach me there!

Categories: Advocacy, All News, Featured news, NIH, United States

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3 comments on “NIH’s Dismissive Response to Mary Gelpi’s 50K Petition
  1. Misty Pulcine says:

    I was almost a part of that study in Bethesda, but i didn’t qualify because of a medicine i’m on. The docs are really nice and will talk to you personally to see if you qualify – and it’s paid. Anyone reading this, healthy or ME, should look into being one of their lab rats. Their research is important, they just need qualified volunteers.

  2. Mary says:

    Bless you, and, thank you. I’ve only read the letter once. I will reread it many times over the next days. My first thought/reaction is … Political maneuvering. This is blatant political side stepping. Collins having someone else write the letter for him. Politicians do that all the time but at least they read it, make changes and sign their name to it. Writing to Matt and not to you… Another side step maneuver. Collins has given some vague acknowledgement to having received the package, but he is not involving himself directly with the petition or the lead petitioner. You can be certain that he consulted his law team. With advocates such as yourself and Matt, we keep pushing forward. We send another box. We keep the chatter going.
    I agree with your insights re the letter. And yes, paragraph 6 got my attention. HIV, cancer, Alzheimer’s…legitimate fatal diseases. Opiod crisis? You mean the big pharma opiod crisis? Also, big pharma is deeply immersed and making big bucks off of persons with HIV, cancer and even Alzheimer’s now. We, pwME, are not fiscally strong for big pharma’s bottom line. We know that big pharma influences NIH, Congress, the country. Until they can make money off of ME/CFS, we are on our own, brushed aside.

  3. Erik Johnson says:

    I was in the NIH’s 1999 “Original CFS cohort follow up study”
    conducted by Dr. Peterson in Incline Village.

    The NIH knows exactly what evidence and illness they are supposed to be studying,
    and where to find it.

    For them to feign confusion in this matter betrays their disingenuous agenda.

    They tried to behave as if the study was a sign of their sincere desire to solve the illness
    but all it really for was to find out if we are all dead from cancer and they should start panicking.

    Since we weren’t, the NIH felt safe in continuing to act as if they don’t know anything
    about CFS.

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