Occupy CFS blogpost "Congress: We Need an RFA"

[justinreilly]

http://www.occupycfs.com/2014/04/02/congress-we-need-an-rfa/

I am very happy to report that an effort is underway to secure Congressional support for a $7-10 million RFA for ME/CFS funding at NIH. And there is something YOU can do to help!

Representative Zoe Lofgren (D-CA) and 10 of her colleagues have signed a letter to Dr. Francis Collins, Director of NIH, asking him to follow the recommendation of the CFS Advisory Committee and allocate $7 to 10 million for an RFA. This would be money set aside for ME/CFS research (currently no money is guaranteed to ME/CFS). I’ve posted a copy of the letter for you to read and take to your own Congressman/woman.

What you can do:

• Read the letter, and if your Representative has already signed then call his/her office to say thank you! This is very important because these offices track the feedback they receive. So call your Congressman’s office, and say: “I (my family/friend/etc) am a constituent, and I want to thank the Congressman for his/her support of research into the medical condition myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).”
• Thank Dr. Ben Gutman, the aide in Congresswoman Lofgren’s office, for making this happen. Email him at ben.gutman AT mail.house.gov.
• If your Representative has not signed the letter, then ask him/her to do so! Call the office, identify yourself as a constituent, and briefly tell them why ME/CFS research is important to you. Then ask that your Congressman/woman read the letter and consider signing. You can share both the letter and the introductory email (which begins “Dear Colleague”) with the office, because that email provides the context and contact information if they have questions. Do not worry if you only speak to a staff person and not your Representative. Congressional staffers are influential. Tell them that you will call back to follow up in 2-3 weeks – and then remember to do it.
• Report results. If your Congressman/woman signs the letter, then please let me know. Just post the name, state and Congressional district here. And if he/she did not sign, politely ask why and report that reason and the Representative’s name here, too.

I’m not responsible for getting this ball rolling, but it’s nice to see. I’ll be calling my Congressman tomorrow, and I hope you will too.

 

[justinreilly]

I think Patricia Carter has some valid points and questions here:
http://www.mecfsforums.com/index.php/topic,19855.msg160917.html#msg160917

Namely-
Who worked with Dr. Gutman to come up with this letter?
No requirement that research be biomedical.
Don’t really like all the thank yous and applause for Collins’ efforts on ME.

I also believe (correct me if I am mistaken; does anyone know about this?) that an RFA can be funded over more than one year, like Fred Freidberg’s NIH grant which is spread over around 4 years. So, even if Collins does this, it could be $7M over several years, on psych research, less than we are getting now.

Also, I recall that Pat Fero’s report said that while NIH claims around $6M per year in recent years (now going down to $5M), that the actual spend was something like $3M once you took out the fake stuff such as on a totally unrelated computer program called “CFS” which
stands for something unrelated to Chronic Fatigue Syndrome.

I am posting a comment asking for more info on this and who worked with Dr. Gutman on this.

I also don’t think asking Collins for an overall plan is a great approach. They should present one to him (the broad outlines of which we have done already)- it could be as simple as just spending $300M next year on biomedical CCC-defined ME research focused on biomarkers, biomedical diagnostic tests and state-of-the art pathogen detection.

Sure, I don’t expect the members of congress to agree to this much spending, even though we deserve even more than that because of “back pay.” But I am not going to waste my time on trying to get my members of congress to request something that, even if followed to the letter could result in less than the approximately $3M per year we get now. I am totally welcome correction if I am wrong about any of the facts here. Maybe Dr. Gutman would be amenable to drafting a new letter.

 

[Chris]

As a Canadian, I don't really know what is involved with this RFA thing, but I guess we should be happy at anything we can actually get; though maybe funding of Ian Lipkin's study should have been made part of the request? It really is outrageous that a relatively modest (by NIH standards) request from perhaps the premier virologist in the US was turned down, and in effect passed on to us. But short of Obama stepping in personally and firing some of the top brass at NIH--which he is not going to do just now--I am not sure what can be done to really alter the situation, lamentable and even criminal though it is. Chris

 

[*GG*]

As a Canadian, I don't really know what is involved with this RFA thing, but I guess we should be happy at anything we can actually get; though maybe funding of Ian Lipkin's study should have been made part of the request? It really is outrageous that a relatively modest (by NIH standards) request from perhaps the premier virologist in the US was turned down, and in effect passed on to us. But short of Obama stepping in personally and firing some of the top brass at NIH--which he is not going to do just now--I am not sure what can be done to really alter the situation, lamentable and even criminal though it is. Chris

Yeah, good one. Obama is a community organizing clown! He hasn't even fired that hack that is heading up Obama(Really doesn't)care (about us piss ants, they are insulated), Kathleen Sebelius! Destroy one of the greatest health care systems of the world, just to help thousands of people with pre-existing conditions, it's all a ruse, they just want to control the whole system, so then they can control most of us, except for the rich, they will always have options! Our health care system could have been reformed in other ways, but they don't want to do what works!

GG

 

[justinreilly]

Chris, you may know that going to Congress is, imo, the way to go, though they're going to have to care a lot more than they do now and not put out such wimpy requests. I think it will take a long time to make the progress we deserve, but as you say, anything is better than what we have now and I think we can get some meaningful change at some point in the next few years if we focus.

 

[Ren]

From the original letter: "We applaud your efforts to support the Trans-NIH ME/CFS Research Working Group, and in hosting the ME/CFS Research Workshop in April 2011."

Is the P2P "thing" - created to "inform" the IOM ME/CFS panel - part of the Trans-NIH ME/CFS Research Working Group?

Upon first reading the letter, I too though that funding should be designated biomedical only.

I think the requested funding sum should include back pay. I see ME/CFS most often compared to MS funding, so shouldn't we ask for this number at least, while reminding officials that such a sum represents equality at this moment in time only, and is very generously not asking for full back pay. Perhaps we could then come to an agreement to address partial back pay funding over such and such period of time?

I think we need to ask for what is ethical, and then the officials can bully the number down from there. Otherwise, it seems officials will at best throw peanuts to us, and later use such peanuts to underscore how they gracefully relented to public pressure but evil patients still aren't happy, blah, blah, spin.

What about writing to congress and saying that you (general you) support increased funding but according to terms different from those laid out in the current letter? What are the chances of a different congress person drafting a new (improved) letter that addresses and corrects the current loopholes?

 

[jspotila]

Is the P2P "thing" - created to "inform" the IOM ME/CFS panel - part of the Trans-NIH ME/CFS Research Working Group?

The P2P meeting was proposed by the Trans-NIH ME/CFS Research Working Group, and the proposal competed against other meetings proposed by other Institutes/Groups at NIH. The meeting is being funded by the Office of Disease Prevention at NIH, a different pot of money than ME/CFS research grants.

FWIW, I think it's important to note that this letter from the Congressmen to NIH already has signatures. It's going forward. If people want to write to Congress or NIH separately, or work with their own Congressmen, that's fine (and great, actually). It's always good to look at how an effort can be improved, and then make that happen, but just be aware that critiques of the letter can only inform future action at this point.

 

[Seven7]

@jspotila As a side note: My concern is not even getting money at this point, I think first we need to correct the issue of ME being viewd as Psycopsomatic by reviewers, no matter how much money they approve if they can reject all applications. So what can we do in that sense? Just a thoguht.

 

[Nielk]

@jspotila As a side note: My concern is not even getting money at this point, I think first we need to correct the issue of ME being viewd as Psycopsomatic by reviewers, no matter how much money they approve if they can reject all applications. So what can we do in that sense? Just a thoguht.

I agree with you Inester7 that where the money is spent is crucial, but at this point, if we have an opportunity to help raise the total funding for ME/CFS, I think it is a worthwhile endeavor. It does not stop us from at the same time, pursuing the very disturbing fact that Lipkin was refused his request for funding as well as many others.

We can tackle this on two fronts.

 

[justinreilly]

The thing is, I am not clear on if this proposed RFA will actually raise funding at all. From how I understand it, funding could be lowered and still grant everything requested in this letter. I have asked about this on occupycfs, but haven't gotten a real answer.

 

[justinreilly]

Here are the CFSAC recommendations cited by anonymous:

May 2011:
2. CFSAC recommends to the Secretary that the NIH or other appropriate agency issue a Request for Applications (RFA) for clinical trials research on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

November 2012:
3. Research
CFSAC recommends:

• Establishing a dedicated standing committee for ME/CFS at NIH.
• Instructing the NIH to issue an RFA (funded at the $7-10 million range) for projects to establish outcomes measures for ME/CFS diagnosis, prognosis and treatment which would include but not be limited to biomarker discovery and validation in patients with ME/CFS.
• Allocating specific funds to study patients with ME/CFS from past cluster outbreak.
• Allocating funds to study the epidemiology of patients with severe ME/CFS.

So, the language in the CFSAC recommendation is a bit better than the language in the letter, since as it is written in the letter, all the funding could go to psych research and none to "biomarker discovery and validation."

I think it is a good point to try to pick recommendations that have been backed by CFSAC and other authoritative bodies. If you limited it to that you could have found better things to recommend, such as the adoption of CCC as the official 'permanent' definition of ME by HHS- the recommendation that I believe was made at the last CFSAC meeting (the recs from 2013(!!!) have not been posted in the recommendations section and 2014 have not yet been posted anywhere on the CFSAC website yet).

I think there was a recommendation to raise funding to levels "commensurate with the disease burden." That is not explicitly a hard number. But it would not be difficult to translate that to a hard number, say $250M+ per year.