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.
That’s splendid, Jenny. Thanks for sharing how we can help! It’s not nearly enough, but it’s a start. We have to start somewhere.
My rep/Congresspeople always tell me they will pay attention for when there is relevant legislation, so here is their opportunity. 🙂
Great to see, Jennie, thanks for posting.
People could make the point in their letter that MS, with a similar disability profile to ME, but that affects fewer than half as many people, gets $115m a year to our $5m: that is, nearly 50 times as much per patient: and that the direct and indirect costs to the US economy are over $19 billion.
http://report.nih.gov/categorical_spending.aspx
http://www.dynamic-med.com/content/7/1/6
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 does not 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 on 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.
“We must be heard! We must be. We are not crumbs! We should not accept crumbs!” -Larry Kramer
I should have been clearer. By:
“I am posting a comment asking for more info on this and who worked with Dr. Gutman on this,”
I meant to ask you, Jennie, who in the ME community worked with Dr. Gutman on this and do you have any more info.
My understanding is that it was a constituent of Representative Lofgren.
I oppose this project. I have spelled out my reasons on a post on MECFSForums, located here: http://www.mecfsforums.com/index.php/topic,19855.msg160918.html#new
Patricia Carter
Just to respond to a couple of the points you raise, Patricia:
You said this letter has CAA fingerprints on it, and suggest that I’m acting as some sort of front for the CAA. I have had no conversation or discussion with CAA about this, nor have I received any information about it from them. The information and request to publicize it came from an advocate who is not linked to the Association. If they are involved, then I am completely unaware of it. My understanding is that this letter was initiated through a constituent of Representative Lofgren. I learned about the letter last night and immediately posted the letter to get the ball rolling.
You asked if money NIH is already spending on ME/CFS research could be counted towards this RFA (if it was issued), meaning that it would not be $7 million of new money. My understanding is that an RFA is set aside, guaranteed money. Right now, ME/CFS applications like Dr. Lipkin’s go in under a Program Announcement – which means there is no guarantee of how much NIH will spend on the research. It could be $0, it could be $10 million. But with an RFA, NIH is saying “here is $7 million set aside for ME/CFS research.” Applications then come in under that RFA (if the investigator wants). NIH would not be able to count money it is already spending against that set aside money.
Can you suggest the best way to do this by e-mail, for those who have difficulty making phone calls?
Yes, an excellent point! Go to the directory of Representatives (thanks for posting that, John), and find your Rep. Use the “Contact Me” link on your Rep’s profile page and you should be able to email the right office.
This is awesome, thanks for sharing Jennie! Sasha thanks for suggesting some talking points, I always get flustered when I get asked about ME/CFS and can’t explain the need concisely.
Also, many reps are up for election this year so it’s a great time to ask what they are doing for us!!
Jennie – will we be able to see the letter as it is updated with names so that we can track our representative’s actions?
I’ll try to provide updates as I hear them. I can’t guarantee my list will be complete, because I’m not the centralized collector of updates to the letter, but I will do my best.
Below are links to a map to find your representative + a directory to get their contact info-
Find a Senator or Representative-
https://www.govtrack.us/congress/members/map
Directory of Representatives-
http://www.house.gov/representatives/
I just called my Representative’s office and it wasn’t bad at all. First I got it in my head what I wanted to say (taking heavily from Jennie’s talking points; thanks Jennie!) and then I called them up and explained what I was asking. The whole thing took less than 5 minutes.
When I called, I asked to speak with a staffer, then explained that I wanted to ask if my Rep. would consider signing a Congressional letter requesting an RFA for ME/CFS research. I explained that ME/CFS is a crappy name for a severe disease and research is severely underfunded and an RFA directing specific funds to ME/CFS is much needed. The staffer gave me her email address to send the letters to and asked me to include my contact information at the end. That was basically all it took. I asked if I could contact them back in a few weeks if I didn’t hear from them and she said absolutely.
Below is the text of the email I sent. If you don’t feel able to call and want to send an email instead, just write and say that you would like to ask if your Rep. would consider signing a Congressional letter asking for an RFA for ME/CFS research at the NIH because ME/CFS research is so underfunded. Be sure and attach the two letters to your email-
Congressional letter – Dr. Collins – March 2014-
https://dl.dropboxusercontent.com/u/57025850/Congressional%20letter%20-%20Dr.%20Collins%20-%20March%202014.pdf
Dear Colleague 2 – letter – March 2014
https://dl.dropboxusercontent.com/u/57025850/Dear%20Colleague%202%20-%20letter%20-%20March%202014.pdf
———————————–
(my email)
Hi xx, thank you very much for taking the time to talk with me. Attached to this email are the letters we discussed. The first is the Congressional letter to NIH Director Dr. Francis Collins (already signed by 11 Members of Congress) asking for an RFA for ME/CFS research and the second is the letter from Congresswomen Lofgren and Eshoo to other Congresspeople asking for their support.
I am also including links to a recent article about how funding is so scarce for ME/CFS research that noted virologist and 2014 Mendel Award winner Dr. Ian Lipkin is forced to try crowdfunding to raise money for ME/CFS research because there is so little spent on the disease by the NIH.
Thank you very much again for speaking with me and I hope to hear back from you soon.
Regards,
(your name)
(address)
(phone number)
With Significant Advances But Little Money, Chronic Fatigue Syndrome
Research Tries Crowdfunding-
http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome-research
The CII’s Ian Lipkin Recipient of 2014 Mendel Medal-
http://cii.columbia.edu/blog.aspx?cid=iqJLMA
OUTSTANDING! Thanks for doing this, and for sharing your email. Including those two articles was a great touch!
@John
Thanks John. The letter originated from two Representatives, Lofgren and Eshoo, so that’s why the majority of signers are Representatives — it’s a “Dear Colleague” letter so it would go to Representative colleagues.
But please share this with your Senators as well. Having a sponsor in the Senate is important too when it comes to getting anything passed.
As there have been some questions raised and I was one intermediary party on this, let me clarify a couple things:
1) The majority of Congressional signers so far are Californian. This is because many Californians have lobbied their Congressional members for years and years — visiting/ e-mailing/ faxing/ calling — to get attention for this medical condition. I’m sure others in other states have too but this is what we have in front of us right now.
2) The patients and advocates lobbying for this run the spectrum from supporting the CFIDS Association for America, to being neutral about it, to being opposed to it; however, this was one action they could support together.
3) One does not get someone, like Dr. Collins or most people, to change their mind by insulting, being condescending, or degrading to them. Hence what some would see as obvious praise is partly a diplomatic move. [Read up on emotional intelligence.]
4) The amount of money requested stemmed from CFSAC 2011 and 2012 recommendations. While I personally would have asked for much more, this amount has the “backing” of a federal recommendation.
5) An RFA is one item ME/CFS researchers have been asking for specifically for a long, long time.
5) Politics is the art of compromise. If you have ideas and more importantly, CAN CARRY IT THROUGH, to get more funding for ME/CFS, more power to you and I hope you succeed. However, please do more than just complain. I see too much talk and too little action.
Anonymous, can you clarify if there is any time frame associated with awarding and spending an RFA’s money? I am very curious how this would impact yearly spending.
I understand that a member of Congress probably would not want to insult Dr. Collins for our sake and also that it may not be the best way to get him to change his mind. My opinion is that use of language like ‘applaud’ goes too far especially if written by patients. It sounds like your group wrote that language. Is that right?
I ask for the sake of transparency for you to tell us who you and your group are.
Justin, I allow anonymous commenters on this site. I do not inquire into the identity of those commenters, nor those who post under pseudonyms. Our community is filled with people who act anonymously or under aliases for one or more reasons – and I can point to other strategic efforts in the last year that were wholly or partially conducted by people whose names were not publicly associated with those efforts. If Anonymous wants to disclose his/her identity, that’s fine. But transparency is not always possible or desirable for those who post without using their real names.
Jennie, you said “Our community is filled with people who act anonymously or under aliases for one or more reasons – and I can point to other strategic efforts in the last year that were wholly or partially conducted by people whose names were not publicly associated with those efforts. ”
Yes, people post messages on forums and blogs anonymously. However, it is one thing to post an opinion anonymously and it is quite another to ask us to request our Senators and Congressmen to get money allocated without disclosing who is asking us to do this. You and this anonymous person are asking us to put our own reputations–with our own names being attached to our requests–without telling us who is behind this project. I do not recall one such instance of this during the time I have been involved in ME/CFS projects.
If this person who started this project is serious and wants this project to succeed, then why does he or she not disclose his or her own name? We are being asked to involve our names and reputations; why should the initiator of this project not disclose his or her name?
Actually, I can think of a couple efforts that did not have full disclosure or transparency for all the people associated with it.
Is transparency better? Absolutely! Is it a prerequisite to the effort being worthy? That’s up to people deciding whether to participate. If someone is not comfortable acting on something without that transparency, it’s his/her right of course. If transparency is a deal breaker, then apply that standard across all advocacy projects. This project has the advantage of a finished letter (which I’ve posted in full), already signed by Congressmen. The letter is moving forward, and people can support it by seeking more Congressional signatures, or they can move forward with their own efforts, or they can boycott the whole thing.
Trust is a big issue in the advocate community, and I understand why. Act as you see fit.
Thank you, Jennie for making us aware of this effort. Regardless of who the initiators are, this is a commendable endeavor. Regardless of how exactly this funding will be used, having more government funding for ME/CFS is a positive initiative and worth taking the time to try to get some more signatures for those who have the energy/capability to do so.
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.
@Justin Reilly
I wouldn’t worry too much about psych vs. non-psych ME/CFS research at the NIH. Sometimes the NIH funds psych research that’s not really important but IMO they haven’t really funded the balls to the wall kind of psych nonsense that the UK MRC (used to?) funds. From what I’ve seen, the NIH mostly funds really good biomedical research by well respected people in the field (ie Klimas, Fletcher, Baraniuk, the Lights, Shungu, Natelson, etc).
Here’s an example of the type of research the NIH funds in ME/CFS-
NIH 2009- http://report.nih.gov/categorical_spending_project_listing.aspx?FY=2009&ARRA=N&DCat=Chronic%20Fatigue%20Syndrome%20(ME/CFS)
NIH 2010- http://report.nih.gov/categorical_spending_project_listing.aspx?FY=2010&ARRA=N&DCat=Chronic%20Fatigue%20Syndrome%20(ME/CFS)
NIH 2011- http://report.nih.gov/categorical_spending_project_listing.aspx?FY=2011&ARRA=N&DCat=Chronic%20Fatigue%20Syndrome%20(ME/CFS)
NIH 2012- http://report.nih.gov/categorical_spending_project_listing.aspx?FY=2012&ARRA=N&DCat=Chronic%20Fatigue%20Syndrome%20(ME/CFS)
NIH2013- http://report.nih.gov/categorical_spending_project_listing.aspx?FY=2013&ARRA=N&DCat=Chronic%20Fatigue%20Syndrome%20(ME/CFS)
I also agree with Justin, it’s probably worth including in letters/emails that a NIH RFA is part of the CFSAC Highest Priority Recommendations list-
“CFSAC recommends: that you instruct 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.”
Highest Recommendations from the Chronic Fatigue Syndrome Advisory Committee-
http://www.hhs.gov/advcomcfs/recommendations/cfsac-recs513.pdf
@John
Sorry, forgot to add- IMO the NIH generally funds quality biomedical research in ME/CFS, it’s just that they don’t fund near enough of it, which is the point of the RFA.
TRUST . . . ??
Yes, this is hard to come by in the ME/CFS community–and for valid reasons–both current and historical.
HHS, CDC, NIH and the politics played are/have long been discriminatorily ‘housing’ ME/CFS at the bottom rungs of the governmental ladder of budgetary medical hierarchy — directly preventing and standing in the way of the freedoms and rights of persons (approximately one million in the US) with ME/CFS–preventing us from attaining a return to good health and being able to participate in life as productive active members of society–in short–to live life.
Is it any wonder that stolen lives are speaking up in anger and with questioning trust? Is it any wonder that we are not necessarily impressed with what amounts to pittance ‘coming our way’ maybe ? It is incumbent upon us to ask the questions to get to the answers below the surface.
There are so many trying so hard to work as they can for the cause–to get to the justice we so deserve in funding and backlog in funding to lead to biomarkers and bona fide treatment for persons with ME/CFS. We continue to fight hard for our rights and equality!
@Justin Reilly
Not just to Justin but to others as well.
Yes usually there is a time frame and a limited one at that for RFAs in the sense that if an RFA may call for all applications to be submitted quickly but this varies depending on the RFA:
http://grants.nih.gov/grants/guide/description.htm
And to clarify, as I had already said, I am an INTERMEDIARY — I did not write the letter. Read Jennie’s post — Dr. Ben Gutman at Rep. Lofgren’s office did — but if you are going to criticize his letter, be cautious. It took a lot of effort to get this far and people who craft legislation, while heeding constituent input, also have their sense of what will fly and what may not.
Why stay anonymous? Some people who support this effort work and may lose their jobs or be at the risk of losing their job/ promotions if they disclose any chronic illness/ disability (this applies to any illness, not just CFS); others may be considered “insiders” to the process and be prohibited from helping by their employers if they reveal themselves; a third group have children affected and want to maintain their kids’ privacy; finally, it may shock you to know this, but in this age of the Internet, some of us still value our privacy in general, health-related or not! It seems sort of ridiculous I have to explain but there it is.
As Jennie says, it is up to you and everyone else how you want to act. I would urge you to concentrate on the action itself rather than where it originated from.
I’m not sure asking for an RFA is such a good idea until we see how the IOM decides to define the illness. You could wind up getting 9 million dollars that will be going to study people that are just “tired” or have depression. That would be a complete disaster.
I believe any advocacy effort should be used to get the government to cancel this IOM effort and get the government to recognize the CCC. Once that get accomplished then push for an RFA.
First things first..
@Keith Baker
Well said,
“I believe any advocacy effort should be used to get the government to cancel this IOM effort and get the government to recognize the CCC. Once that get accomplished then push for an RFA.
First things first..”
Goes to the bottom line and the crux of ME/CFS.
@John
John, I’m not that worried that this will be make things any worse than they are now, but why go through all that effort to end up with no change?
And I do realize that NIH’s psych research is generally of the not-so-damaging Fred Friedberg variety, but why encourage NIH to spend as it pleases when that will result in wasting more millions on (at best) useless psych research? Simply as a taxpayer, I don’t want millions more wasted on useless research. Even CFSAC specified in its second recommendation the types of biomed research it wanted done.
There is a pernicious side effect to this too: researchers start or continue to recommend CBT and GET or fail to criticize it because that is where NIH spends its money and the researchers want to get on NIHs good side (I think this is the reason behind Klimas, Bateman, Friedberg and Komaroff’s recommending CBT and GET).
I agree with Keith. I urge everyone to focus on getting the IOM contract cancelled.
We have researchers just mentioned who have compromised for years
so they can get NIH funding. This compromise has kept us with a name that has given us no credibility.
They may have thought they were helping us, but they really haven’t.
Research of any substance has actually been done by the researchers that haven’t received NIH funding, but anonymous donors or generous patients.
In reality, this illness parallels HIV/AIDS, it just takes us longer to die,
so why would anyone want to continue this “compromise.”
If we did help with this letter effort, would we have a say where this research money goes
if we were to receive it?
The people who receive and evaluate the grants applications are biased,
we probably would have no say to where the money goes.
7-10 million research dollars is really nothing, this is actually a distraction that takes
attention off of the IOM.
The real question is, what “vested” interest does the actual writer of this letter have because this letter comes at a questionable time.
Maybe if the writer “upped the ante” by a few zero’s, there would be an overall better response….
Many of the giants in our field are NIH funded: Dr. Klimas, Dr. Broderick, Dr. Baraniuk, Drs. Kathy and Alan Light, Dr. Jason, Dr. Fletcher – just to name a few. Some of those grants came after private sources helped those investigators collect preliminary data. But the bottom line is that NIH is where the big money is. Private sources will NEVER be able to provide the investment needed over time to crack this illness.
The question of the bias among grant reviewers is an important one. I’ve been investigating some of that, as I’ve noted elsewhere. But it is difficult to get access to the documents that will prove or disprove it.
In terms of the vested interest of the letter writer, this letter came from the request of a constituent of Congresswoman Lofgren.
We also need to push for the another part of that Highest Priority Recommendation list, specifically in regards to “establishing a dedicated standing committee for ME/CFS at NIH”. That thing about Lipkin’s grant being denied on the grounds of ‘psychogenic illness’ in ME/CFS is so completely unacceptable.
Research
CFSAC recommends:
• establishing a dedicated standing committee for ME/CFS at NIH.
• that you instruct 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.
-Highest Recommendations from the Chronic Fatigue Syndrome Advisory Committee http://www.hhs.gov/advcomcfs/recommendations/cfsac-recs513.pdf
Thank you Jennie for letting us know about this effort and many thanks to those who initiated it. An RFA for ME/CFS should have been issued years ago, for example in connection with the SOK workshop – it would be great if we could finally have one!
I agree that a lot of important studies have been funded by NIH. I also agree that they need to do much more, put much more money in, secure proper review panels for ME/CFS, of course focus on biomedical research only, etc. I see this as a good step in the right direction.
(I’m outside the US so I can’t help, but I’m cheering!)
Easy advocacy: retweet my twitter posting:
Kelly K Hallman @k_hallman
Congress! Support Chronic Fatigue RFA http://goo.gl/yzPt1E . Disability profile like MS but 2x affected 1/50 funding http://goo.gl/mnlfgO