NIH Time Warp

Let’s take a quiz. I have a letter that was sent on behalf of Dr. Francis Collins, Director of NIH, to a person with ME, and I want you to guess when that letter was sent. Here’s an excerpt:

First, let me express my heartfelt concern for you and the millions of other men and women suffering from ME/CFS. This is a terrible disease and we must all work together, doing what each of us can, to find safe and effective treatments for ME/CFS and restore lives to health.

When do you think that was written? Ok, here’s another quote from the same letter:

It is through the receipt of meritorious research proposals that funding can increase.

Have I given it away? Here’s the last quote:

In early September, Dr. Collins reiterated NIH’s commitment to accelerating biomedical research focused on ME/CFS.

Ok, pencils down and all that. When did NIH send that letter?

Think carefully about your answer. I did give you a clue by saying it was sent on behalf of Dr. Collins, who became Director of NIH in 2009. Do you have a date in mind?

October 28, 2010. That’s right. The NIH sent this letter in 2010.

I asked you to guess the date because that letter could have been written yesterday. Very little has changed. NIH still professes to care deeply about people with ME. NIH is still pursing the strategy of waiting for research proposals to increase, rather than taking sufficient and meaningful action to stimulate research.

This letter was sent to Cheryl M. after she wrote to Dr. Collins to plead with him for more research funding. Cheryl’s letter and NIH’s response basically speak for themselves, so I have reproduced them in full here with only a few footnotes.

When she wrote to Dr. Collins, Cheryl had been bedridden for three years. Now, almost eight years later, she is still confined to a bed or recliner. Cheryl cannot leave her home more than a couple hours at a time, every few weeks. She has now been sick for 18 years.

NIH and Dr. Collins: you are brilliant at expressing sympathy. You are also brilliant at making it look like you are doing everything possible to help us. You are brilliant at telling us to be patient, and promising that you are going to fix this.

I think everyone with ME will join me in saying: It is time to fix this. Be brilliant at funding ME research. Be brilliant at finding creative ways to jump start this field, because it has languished for decades without the funding and serious attention that is desperately needed. Be brilliant at this, because Cheryl’s life is wasting away, along with at least one million others.

Here is Cheryl’s letter:

Dr. Collins,

Thank you for your participation in the recent conference on XMRV. It has filled me with much hope that our illness is being brought to light and hopefully treatments are on the horizon.

I have been disabled for 10 years due to CFS/ME and related illnesses. Due to misdiagnosis and taking a long time for an accurate diagnosis, my health deteriorated to the point of having to give up all the things that I previously did and enjoyed.

I was a very active woman before getting sick. I worked with special needs children and families, developed early childhood curriculum, was a workshop presenter/speaker for peers, volunteered heavily at my church and in the community.*

Now I am a drain on my families [sic] (parents included) finances and financial security. My illness cost my husband his job and he took a much lesser paying one to be closer to home and helping me more.

I have been primarily bedridden for 3 years. I long for the simple things in life like having the energy to walk around my block, go to church, go out with friends. Those days are gone but not forgotten.

I urge you to please fund XMRV/CFS/ME research generously. I pray for the day that I can continue an active life, as do all of the others that I know who are affected severely by this illness. So many have died by their own hands because they were too tired to keep on fighting. Please be a part of our solution. Please hear our cries for help!

Sincerely,

Cheryl M.

And here is NIH’s reply to Cheryl:

Dr. Francis Collins, Director, National Institutes of Health, has asked me to respond to your inquiry regarding National Institutes of Health (NIH)-supported research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

First, let me express my heartfelt concern for you and the millions of other men and women suffering from ME/CFS. This is a terrible disease and we must all work together, doing what each of us can, to find safe and effective treatments for ME/CFS and restore lives to health.

In early September, Dr. Collins reiterated NIH’s commitment to accelerating biomedical research focused on ME/CFS. It is through the receipt of meritorious research proposals that funding can increase. In FY 2010, the NIH provided approximately $6 million for ME/CFS and XMRV research** grants, contracts, and other types of awards to universities, hospitals and research organizations, including the Whittemore Peterson Institute. An additional $5 million was awarded to investigators studying aspects of ME/CFS, such as pain, neurological complications, genetics, blood pressure, retrovirology, and sensory processing.***

NIH is currently soliciting ME/CFS research applications through two Program Announcements. To help investigators prepare applications for research funding, NIH holds grant-writing workshops and assigns program officials to answer questions and assist with their application submissions. Dr. Collins recently asked the National Institute of Allergy and Infectious Diseases, one of the 27 Institutes and Centers at the NIH, to study a possible connection between XMRV infection and ME/CFS by using blood samples from patients diagnosed with ME/CFS.

The Trans-NIH ME/CFS Research Working Group (WG) is composed of experienced program officials highly committed to helping advance NIH supported research on ME/CFS at universities, hospitals and research institutions. The WG members serve as conduits to their respective NIH Institutes or Centers to facilitate communication between scientists and NIH leadership. The WG is hosting a major State of the Knowledge Workshop in 2011 to bring together scientists and clinicians to evaluate current ME/CFS data, propose priority areas that need further attention and then identify mechanisms for supporting such critical research.

Additionally, the NIH works with many Federal agencies and ME/CFS advocacy groups through the Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee. It is also expected that by cooperating in planning interdisciplinary initiatives, the NIH and its partners will increase support for multidisciplinary and interdisciplinary research with the goal of finding treatments and, hopefully, a cure as rapidly as possible.

Thank you again for your interest in the NIH efforts to increase ME/CFS research. We at NIH fully support your assertion that ME/CFS patients deserve the very best scientific information we can possibly produce.

Sincerely Yours,

Dennis F. Mangan, Ph.D.

Co-Chair, Trans-NIH ME/CFS Working Group

 

*I wish we knew what Cheryl could have been contributing to her profession and community if she had not been sick for the last 18 years.

**Of that $6 million, 29% went to XMRV and 6.5% was not related to ME/CFS, which means that in 2010 NIH actually spent $4.2 million on ME/CFS research. In FY 2011 (which had already started when this letter was written), NIH spent $4.6 million. And in FY 2012? $3.6 million. So funding was going down at the same time these sympathy statements were sent to Cheryl!

***I have no idea which grants this $5 million includes, but NIH has a pattern of claiming that research tangentially related to ME/CFS is directly applicable. This helps inflate NIH’s numbers but there is no way to fact check the statement in this letter.

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13 Responses to NIH Time Warp

  1. Cheryl says:

    Brilliantly done Jenny! Thank you for being a voice for all os us!

  2. Chris Heppner says:

    Jennie, great blog! Makes one despair–or urge the NIH to give up and just donate any available money to the OMF and Stanford, to Nancy Klimas’ team in Florida, to the Columbia team, to the Lights and Cindy Bateman, and the other centres that are doing their best for us. After their rejections of applications from Ron Davis and Ian Lipkin, I don’t know why serious researchers would bother to apply to the NIH. They have become just a sinkhole for the energy of those trying to help–including notably you!

  3. Eimear Forde says:

    A voice to who though? No disrespect but is this for patients to read? I know it can be used as ammunition by M.E Action but I just want to know the goal here. We know NIH aren’t helping us much. I don’t think I’m phrasing this properly but I’m sure each time some patients read these blogs, they feel a sense of hopelessness. I know I do. So where are we going, what is your goal with these blogs Jennie? Please don’t misinterpret this as a criticism, I just want to understand what the purpose is. We can’t keep beating a dead horse.

  4. Eimear Forde says:

    A voice to who though? No disrespect but is this for patients to read? I know it can be used as ammunition by M.E Action but I just want to know the goal here. We know NIH aren’t helping us much. I don’t think I’m phrasing this properly but I’m sure each time some patients read these blogs, they feel a sense of hopelessness. I know I do. So where are we going, what is your goal with these blogs Jennie? Please don’t misinterpret this as a criticism, I just want to understand what the purpose is.

  5. Laura Logan says:

    Great post, was flabbergasted the letter was from years ago.

    In response to the person who wondered what is the purpose of the blog when the situation always seems hopeless: to me, the blog is one of the best at succinctly organizing the stagnant timeline and giving some who are able to the information and inspiration for supporting advocacy for ME.

    I suspect that many are like me: once we get all fired up, we collapse. Thank goodness for those with enough energy to keep us being heard.

    • Jennie Spotila says:

      Thank you, Laura! My mission in writing this blog is to give advocates information they need to press the government to do more. For this post specifically, I wanted to show how meaningless NIH’s general expressions of sympathy are since they haven’t changed in a decade at least. What matters is their actions, not their words.

  6. billie moore says:

    I think Jennie’s point is – we are not being heard. We are being pandered to, patted on the head, and essentially ignored – for many, many years. But E. Forde makes a good point: what are we to do with this information THAT WILL BE EFFECTIVE, finally? (sorry for the caps – no italics).

    • Jennie Spotila says:

      There is no “finally.” NIH could fund $200 million a year and we would still have to advocate. My previous post had a number of suggestions on what individuals might do to move the ball forward.

  7. billie moore says:

    “Finally effective” relates to getting the NIH to commit that kind of money to the disease. It’s a testament to my faith in your intellectual and investigative powers, Jennie, that I thought maybe you had an as-yet-untried idea for achieving that end. But while all the ideas are good ones, they still take years of work. However, many good people are working hard at advocacy and research – more than in years past.

  8. Elise says:

    Very interesting posts on all of this.

  9. Liz Burlingame says:

    Keep writing, Jennie. This kind of information might be… sad? disheartening? But it’s also incredibly valuable. As ME/CFS patients, we are in a really bad place and it is up to us to say to the world, We are here, we need some help, and we’re not going away. I think that advocacy is tough for healthy people. For those of us who are totally debilitated by a chronic, disabling disease, it’s near impossible. But look at us go! Unrest is out there in the world and the Senate might just give us a little attention with S.R. 508 and at a state level, our GA House of Representatives passed H.R. 170 in 2017 recognizing ME/CFS for the first time. All this is cumulative. It will lead us to someplace better than we are today. And I have a similar letter, dated from 2007 from my then Rep. Tom Price. He also agreed we needed funding. No more. Now we demand action — and we have a history of broken promises to stand on.

  10. marcie myers says:

    ———- Forwarded message ———-
    From: Marcie Butler Myers
    Date: Fri, Jul 17, 2015 at 11:40 AM
    Subject: From Marcie Myers re: my donation to OMF.
    To: Katie Graceffa

    Dear Katie and Linda,

    I am both a CFS patient since 1994 and a patient advocate. I was forced to quit my position as Nurse Manager over 800 inmates at two SC Department of Corrections outpatient facilities in 1999. By 2000 my husband had initiated a divorce and I’ve been on my own since then but still standing financially thanks only to SSDI and early medical retirement from Corrections.

    I’d be more than happy to assist in any way possible. I remain in contact with Dr. Elizabeth Unger at CDC regarding her development of teaching modules for medical university students and continuing education for current practitioners, a subject I broached several years ago via phone testimony at the CFSAC meeting. In response, I received an email from Dr. Friedan, head of CDC, and an ongoing contact with Dr. Unger regarding this issue.

    Dear Jennie,
    Above is a letter to the OMF dated 2015 where I stated that several years EARLIER I testified regarding the need for education of current practitioners and medical students. It was on that date that Dr. Friedan instructed Dr. Unger to begin this task. Now, 2018, Dr. Unger states that she will make due with a zero CDC budget that was earmarked for educating physicians and students. No change on this front either. The Million Missing shall apparently remain such. Short of direct confrontation of our congressional representatives who are on the Appropriations Committee, I’d say we are scraping bottom in terms of options.

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