“The problem is that you need a champion in Congress who’s going to go ahead and say, I want money allocated for chronic fatigue syndrome research. That’s the way it gets done. That’s the way HIV got done, that’s the way breast cancer got done, and so on. It has to be somebody who has some ability to influence the purse.” Ian Lipkin
Funding went up a bit last year for Chronic Fatigue Syndrome at the NIH but only big money is going to the move the needle on your health. Two efforts are underway to add $50 million dollars to ME/CFS research at the NIH over five years. That would triple funding for this disease.
Why focus on Congress and the NIH? Because Congress is the ONLY way to bring big money to this disorder. That’s what Dr. Lipkin said – and he would know – he tried to get funding and failed. If he can’t get it, then who can?
The definition of insanity is doing the same thing over and over again and waiting for a different result. We should give up hope that the NIH is going to turn itself around. They had a prime opportunity to provide a big grant for ME/CFS with the State of the Knowledge Workshop and didn’t take it. They’re spending less money on ME/CFS adjusted for inflation than they did twenty years ago. They need to be forced to pony up some money by the people who hold it’s purse strings – our Congressional representatives.
We have a good start.
Pennies for Paupers – the NIH is spending less, adjusted for inflation, than it did 20 years on ME/CFS, but things may be changing.
Recently eleven Congressmen and women urged Director Collins of the NIH to follow the recommendations of NIH produced State of the Knowledge Workshop and his own federally appointed panel for ME/CFS (CFSAC) and provide a $7-10 million dollar ‘Request for Applications (RFA) for ME/CFS. (Congressional letter – Dr. Collins – March 2014 (1) (After you click on this link click on the Pdf to see the letter)
The IACFS/ME Association followed that up with a strong letter asking the NIH to provide a five-year RFA for $7-10 million that would more than double funding for this disorder. They stated
“We are tantalizingly close to gaining an understanding of potential biomarkers, genetic traits, brain dysfunction, cytokine abnormalities, autoimmune responses, neurological disorders, and treatments” for ME/CFS.”
With their 30 billion dollar budget, a 7-10 million dollar RFA for ME/CFS is not a stretch…
RFA’s are the best funding mechanism the NIH has to offer. In contrast to the abysmally low level of grant applications the CFS grant review panel receives (@6 per session), RFA’s bring applications flooding in.
So far as I can tell, Chronic Fatigue Syndrome has had one RFA in it’s history; a $3 million RFA that followed the Neuroimmne Workshop in the early 2,000’s.
It wasn’t easy; it took several years and Senator Harry Reid smacking the NIH upside the head before they finally provided what ORWH director Vivian Pinn called ‘the smallest RFA’ possible, but that little RFA still made quite a difference, supporting work by Dr. Light, Dr. Fletcher, Dr. Baraniuk and Dr. Theoharides.
The resources are going to have to come because people push their representatives to provide that kind of support. That’s the only way it’s going to happen. Dr. Ian Lipkin
Now with signs that the federal government is beginning to ditch its Scooge-like approach to ME/CFS, it’s past time for an RFA. With International ME/CFS Awareness day tomorrow, let’s build on these efforts, force our way into the NIH’s piggybank, and finally get ME/CFS some real money.
We have the support of 11 congressmen and women to build off of. We have our professional ME/CFS organization stepping forward. Now it’s time for the ME/CFS patients to step up to the plate.
Is the federal government starting to drop its Scrooge-like approach to ME/CFS? Let’s find out!
Support this effort by asking your Congressional Representative to sign onto the letter asking the NIH to triple research funding for ME/CFS. (See the Congressional letter here)
1) If your Congressional Rep. has signed the letter, contact them and THANK them for their support. Something as simple as “Thank your for your attention to and support of research into the medical condition myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS).” They get little positive feedback so everything helps. Please thank Dr. Gutman for starting this atben.gutman@mail.house.gov.
2) If your Congressional Rep. has NOT signed the letter, contact them and ask them to do so. Remember that peer pressure works on them as it does for other people. Seeing their colleagues sign helps.
Tell them you are a constituent (i.e. you vote in their district), tell a bit of your story, why more research is important, and ask the Congress person to read and considering signing the letter endorsed by the eleven other Congresspersons.
(If you email use this link to link to the Congressional letter). If you phone do not be put off by speaking to staff only and not the Congress person; staff are influential. Remember also, they work for you so don’t be shy!
Then say (write) “I’m going to call you (write) back in 2-3 weeks to follow-up, is that OK?” to confirm if they signed or did not sign the letter. Get a paper copy of the signed letter if possible. If they did not sign, remember to ask why and post the reason along with the Rep.’s name.
Find Congressional members phone numbers and email contacts by going here.
- Tomorrow on Int. ME/CFS Day in Pt II of the Fifty Million Dollar Research Funding Campaign we acquaint the new Secretary of Health with ME/CFS!
The ME/CFS Champions Who Have Signed include:
- Anna Eshoo (Mountain View, Palo Alto, Saratoga, along the coast)
- Zoe Lofgren (most of San Jose)
- Mike Honda (Sunnyvale, Cupertino, Santa Clara, Fremont, Newark, North San Jose, and Milpitas)
- John Garamendi (Sacramento, Fairfield)
- Sheila Jackson Lee (Texas, Houston)
- Suzan Delbene (King County, Washington)
- Eric Swalwell (Los Gatos, Cupertino, San Jose parts)
- Scott Peters (San Diego, Poway)
- Daniel Lipinski (Chicago suburbs, Illinois)
- John Lewis (this is *the* John Lewis, the Civil Rights leader, from Atlanta, GA)
- Eleanor Holmes Norton (Washington, DC)
————————————————————————–
See what the IACFS/ME wrote below.
The IACFS/ME Letter
Dear Dr. Collins:
On behalf of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME), we thank you for your attention to ME/CFS, and encourage the NIH to continue and strengthen research on this debilitating illness.
Last month, the IACFS/ME held its biennial research and clinical conference, attracting some 400 professionals and patients to discuss advances in biomedical and behavioral research on the diagnosis, pathophysiology, genetics, and treatments for ME/CFS. The overwhelming consensus from the attendees is that the research efforts, largely supported by NIH, are paying off. We are tantalizingly close to gaining an understanding of potential biomarkers, genetic traits, brain dysfunction, cytokine abnormalities, autoimmune responses, neurological disorders, and treatments. However, we need a special “push” at this time to solve the mysteries of this illness.
We call on you and Directors of key Institutes at NIH to collectively work together to issue a Request for Applications (RFA) calling for R01 and R21 projects related to ME/CFS. At a level of $7-10 million annually for five years, an RFA would double current funding and bring talented investigators into the field for the first time. The ME/CFS RFA would also dovetail nicely with ongoing NIH initiatives including those related to the brain, big data and transformative research.
We realize the substantial reductions in the NIH budget over the past decade have made it hard to issue RFAs. This is even more reason that we must focus our support on specific targets that are poised to make significant progress in the near future. With ME/CFS related to so many other medical diseases and conditions, support for research on ME/CFS will add to, for instance, our understanding of chronic pain, viral/ bacterial infections, sleep disorders, fatigue, autoimmunity, and cancer. In this regard, ME/CFS research already has aided knowledge of Gulf War Illness, fibromyalgia, retroviruses, and Lyme disease.
The Trans-NIH ME/CFS Research Working Group members have been helpful in coordinating awareness of the disease at the NIH. However, without financial support, their efforts to enhance applications to study ME/CFS are limited to oral encouragement. We all know that is not enough. The State of the Knowledge Workshop on ME/CFS in 2011 concluded that there is a need for interdisciplinary research, coordination of research, centralized data sharing, and recruitment of additional qualified investigators. The ME/CFS RFA could address those needs as well as the longstanding CFS Advisory Committee appeal for such an RFA.
The IACFS/ME is the largest professional organization in the world with a mission to promote, stimulate and coordinate the exchange of ideas related to ME/CFS and fibromyalgia research, patient care and treatment. Since 1990, IACFS/ME has been advocating for biomedical and behavioral research to develop ways to diagnose, prevent, and eventually cure this disease. Never before in our 20+ years have we seen such advances in research as what was reported at our recent conference. Bioinformatics, systems biology, high throughput technologies, and the microbiome provide new data and approaches to the study of ME/CFS. We are motivated with numerous possibilities, but troubled with the reality of underfunding to reach these goals.
We call on you with a united voice to set aside FY2015 funds at a level of $7-$10 million for an RFA on ME/CFS. Please let us know how we can help you make this happen.
Sincerely,
IACFS/ME Board of Directors
- Fred Friedberg, Ph.D., President
- Kenneth Friedman, Ph.D.
- Lily Chu, M.D., M.S.
- Staci Stevens, M.A.
- Dennis Mangan, Ph.D.
- Rosamund Vallings, M.B., B.S.
- Sonya Marshall-Gradisnik, Ph.D.
- Julia Newton, M.D., Ph.D.
Let’s push together and make something happen!
Cort, the instructions on what to do are not entirely clear to me. For example what do you mean by saying, “If they did not sign, remember to ask why and post the reason along with the Rep.’s name.”
Post the reason along with the rep’s name here in the comments?
I will email my rep for the Sacramento area a Thank You for having signed onto that bill (even though I vote in Germany, not here ;).
Also, what exactly did Dr. Gutman start? The letter to Dr. Collins?
Yes, Dr. Guttman apparently started the Congressional letter to Dr. Collins asking for the RFA.
Yes, the comments are the best place to do that.
Cort like a number of your readers I’m in the UK. However I’m very much aware that more research gets done in America than here (although the Newcastle team are doing some of the more interesting stuff). I’m grateful to anyone in America who tries to get research done – is it worth uk residents emailing the man who started this?
I think it is…I think he would love to know that people around the world are grateful for his efforts.
Just before reading your post, I read this: http://www.cfscentral.com/2014/05/candid-conversation-with-dr-ian-lipkin.html#comment-form .
In the Lipkin interview he makes it very clear that research funds are allotted to different illnesses by congress.
I remember the beginnings of research funding for HIV/AIDS, breast cancer, and autism. It really did begin with families advocating for their loved ones. I watched people do it. It can be done.
The only way to beat ME/CFS on a grand scale is with systematic, high level research. It appears that this is beginning to fall into place. All we need now is funding.
If you are sick maybe you can follow the steps outlined here. If you are too sick and confused, ask someone to help you contact your representatives. If you are well, do it for your loved ones, help them to do it, and ask everyone you know to do it.
We can do this!
It’s a great interview 🙂
I also just read Mindy’s interview with Dr Lipkin in which he argues that pushing in Congress is, from his experience of the same thing for AIDS and autism, the only thing that’s going to work to increase NIH funding. I strongly recommend reading Mindy’s terrific interview and then acting on Cort’s message.
Great stuff, Cort!
Hopefully, this endeavor will find some success, but with this Congress??
I’ve been thinking, perhaps an alliance with the Autism, M/S, research groups, we would stand a better chance, united, as the underlying cause is probably the same, or nearly so.
The Neurodegenerative Disease Alliance, for example? Include Lyme? RP
I’ve just been watching an ad for a movie coming out called “The Normal Heart” with Julia Roberts, about the early struggles of those with AIDS. I sure wish a movie about our struggles/ lack of funding would get to the big screen. Maybe in 30 years…….
We do have two documentaries underway – Canary in the Coal Mine and the Blue Ribbon Campaign – both look to be very professionally done 🙂
I sent the letter to Senator David Vitter and asked him to sign.
Cool – thanks. It’ll be interesting to hear what he has to say.
The vertical jumping of the http://www.cortjohnson.org page caused by the changing messages of various length in the red box happens in firefox but not IE. Use Internet Explorer for http://www.cortjohnson.org until Cort fixes the site.
Thanks Paul. I didn’t realize that was still happening. The site works fine in Google Chrome – at least for me.
Thank you Cort, awesome efforts by all!
Lets do this!
The websites at http://www.senate.gov and http://www.house.gov allow you to send emails to your individual senators and representatives, but apparently do not allow you to attach the pdf letter to the email. How do we send them a copy of the letter so they know what we’re asking them to sign?
Good question Pat – we’re all learning here.
This link should take you to the PDF on the website – http://www.cortjohnson.org/wp-content/uploads/2014/04/Congressional-letter-Dr.-Collins-March-2014-1.pdf – I’ll put that in the blog. Thanks for bringing that up.
Dear Cort
Just to let you know that after reading your comment in reply to taff, I have e mailed Dr Gutman to thank him.
Thank you taff for your question to Cort