“I can put my fingers on 2,000 well-characterized patients. The work could be done, so why haven’t we done that yet? Because – every single one of the things I have just described – not one of them is receiving federal dollars.” – Dr. Nancy Klimas – P2P Workshop
The Federal Advisory Committee for Chronic Fatigue Syndrome (CFSAC) may finally be approaching real relevance. The committee’s role is to provide advice and recommendations to the Secretary of Health on issues relating to, as the website now says, myalgic encephalomyelitis and chronic fatigue syndrome.
Until last year, however, few, if any of the major recommendations from the panel (create COE’s, produce RFA’s), had ever been acted on. (The federal government acted on CFSAC’s highest priority – creating a definition – when it authorized the P2P and IOM reports.) CFSAC was more a place to file recommendations and educate patients about the government’s programs than to get really meaningful work done.
The two federally funded reports due out this year – the P2P report and the IOM report (due Feb 1oth ) – could shift that. Both will clearly endorse actions that patients, patient groups, and advocacy organizations have been clamoring for for years. The difference is that this time new recommendations are coming from inside the NIH instead of outside it.
These two projects are the NIH’s all the way. They created them in secret – no patient advocates involved – and they picked the experts, many of whom are outsiders, to sit on the panels. That’s enormously helpful – you can’t pin the results on ME/CFS advocates. The NIH has essentially created its own monsters: two groups that are going to tell it, politely of course, that virtually everything that it’s done to this point has been insufficient, and not just a little insufficient but grossly insufficient, to help the people with this disorder. It’s time for the NIH to finally get to work.
The P2P report calls for research networks, Centers of Excellence, National Biobanks, career paths, education outreach and other programs CFSAC has been recommending for years. I imagine that the IOM panel – with the many ME/CFS experts on it – seeing a strong P2P report – is going to go for the jugular and recommend massive changes as well.
That brings us to CFSAC, the mostly ignored but nevertheless potentially very valuable resource sitting in our laps. ME/CFS is one of very few disorders in the NIH, believe it or not, that has its own federal advisory committee. The P2P report was strong but needs tightening. Neither timelines nor numerical targets were ever mentioned.
That’s a bit scary for a community that’s received the runaround from the NIH time and time again. My feelings of unease at that were amplified after hearing Deputy Director Susan Maier suggesting, at the P2P Workshop, that ME/CFS researchers find money in other fields (that have money) and then castigating ME/CFS researchers for not applying for grants. (My guess is that hearing that someone like Ian Lipkin grouse about getting rejected twice probably isn’t going to spark much enthusiasm in that area. Funding high-profile researchers like Lipkin is probably a good thing to do if you want other researchers to participate.)
She’s right, though. You can’t win if you don’t play and ME/CFS researchers, by and large, have not been playing at the NIH.
But if Maier knows the history of the disease at the NIH, she knows that simply producing some RFAs will bring old researchers and new roaring into the field. That worked wonders about ten years ago and it would do spectacularly well now. But here we have her suggesting that researchers get money from other fields – the ones the NIH is willing to fund. Not only is that scary, but it’s also really old news: the NIH was suggesting that (fruitlessly) long before Maier stepped on the scene.
Maier’s statement may, however, simply reflect the horrible position ME/CFS finds itself in at the Office of the Director and Office of Women’s Research with no budget and no credible funding mechanism. We have big structural issues that need to be taken care of.
It’s going to be up to ME/CFS advocates – and that’s us and that’s CFSAC, SolveME/CFS Initiative, PANDORA, the Simmaron Research Foundation, and everyone else – to take advantage of these opportunities. How critical our voices are going to be was made clear when the head of the Office of the Director himself, Dr. James Anderson, whom one might think could with flick of his pen throw massive resources ME/CFS patients’ way, said, “ultimately it is the voices of the patients that will help advance research on ME/CFS.” The man appears to be saying he needs backup. You want big changes, you – the patients – have to push for them.
That brings us back to special CFSAC conference call tomorrow. The P2P report had holes you could run tanks through. Hopefully, they will listen to the comments from advocates and organizations (due by the 16th) but CFSAC is a Federally sponsored group; you’ve got to think that it’s recommendations are going to carry some extra weight.
Thankfully CFSAC got its act together and called a special session to produce its own recommendations for the P2P report. It will create those during a two-hour conference call from 1-3 pm EST. Anyone can listen in.
Call-in Number for the CFSAC Teleconference Call
- Tuesday, January 13, 2015 1:00 PM – 3:00 PM EST
- Participant passcode: 9898494
As the P2P and IOM reports come out, they will provide a window of opportunity that the ME/CFS community will — or will not — fully take advantage of. If we come together to produce core demands and come up with a creative strategy to maximize them, ME/CFS research could look very different in a year’s time.
Learn how a 67 year old retiree and his wife felt compelled to lace up his running shoes and get into action to support their son – and everyone else with this disease in A Run For His Son…and Everyone