National Institute of Health (NIH) Director Francis Collins has said he will move aggressively on chronic fatigue syndrome (ME/CFS) – and not to expect small increases in funding either. With the current ME/CFS budget sitting at around $5 million a year Collins talk sounds like a tripling of the budget is a possibility.
All he needs is the money. It looks like he will have it.
Has the money for a big expansion in funding for the ME/CFS program been found?
For once ME/CFS appears to be enjoying spectacularly good timing. Reports suggest the NIH may get as much as $3 billion in new funding by the time the Omnibus Spending Bill is completed, probably this weekend.
If that happens, the money to significantly expand the ME/CFS program should be available. All Collins has to do it is grab it.
Is a major change on the way? Nothing is done until it’s done but right now the news looks very good for chronic fatigue syndrome (ME/CFS). Find out more about this surprising turn of events in
Hi Cort are you going to do a piece on Vernon et al’s just released study?
Very indicative of neuroinflammation at the core of CFS. Surprise surprise.
We need trials that address this NOW
I hope to – unless you want to..would you be interested in doing a blog on that?
Tripling from only $5M per year for NIH ME/CFS R&D to $15M is an improvement, but from totally pathetic funding to pathetic funding for disease that is more common than AIDS, worse than AIDS, that gets approx $3,000M R&D per year, still 200X less per patient. The target needs to be to ratchet up quickly at NIH and outside to $250M/year, which is still 10X less per patient for AIDS funding.
Yes, indeed. I think it would take widespread agreement in the NIH that ME/CFS was a crisis to really boost funding into the stratosphere. Funding boosts like do happen but it’s usually for something like anthrax which shows up and freaks people out. That said, it looks like Alzheimer’s is getting a huge boost s- advocates have apparently been working hard on that for years – and they have a lot of political support.
This is a bizzare article Cort. $15M is not a “major expansion”. It’s setting the bar very low. In years of lost life… i.e. essentially premature death… me/cfs is the worst of all diseases, especially for the patients at the severe end of the spectrum. So far whatever age i die at… you can deduct 4 years from that figure… and that was how long i lived. This disease ruins lives completely! If i do not get better my life ended in 2012. We cannot give anyone reason to think that $15M will be anywhere near sufficient let alone call it a major expansion. Are you kidding! Please never do any negotiating for me Cort. We need, at the very least $200M, for this very serious disease. Read the IOM report. It’s time to get some answers… $15M is not anywhere near good enough. It would not even be a start. Come on Cort… you have an influencial site.. i’m sure it is read by the budget makers.. you speak for the me/cfs community. Why are you giving them a reason to set the bar at $15M and permission for them to think it would even be generous. Solve this serious disease ans give a serious funding! Nothing else is acceptable.
USA has about 2.5 million in our military and spend $600,000,000,000 per year. We may have 2.5 million with ME/CFS, sentenced by neglect by Feds to the equivalent almost of life in prison, without eligibility for parole, but lack for major NIH funding. Fed can spend billions on AIDS or Ebola, but are grossly discriminating against millions of Americans that have done nothing wrong, are ill no fault of their own, and need help, not neglect. With great advances in medicine, this is the best time to tackle this disease, especially with the 21st century cures act and Brain initiatives, plus NIH finally giving M.E. a home in NINDS. Look forward to Francis Collins, NIH, NINDS giving real funding soon on order of $250 million (10X less than HIV, vs 1000X less at moment) and call for proposals for R&D from experts begging to do needed research incl Ron Davis, Ian Lipkin, Jason Leonard, the Zinns, Open Medicine and many others for biomarkers, biomes and perhaps Ampligen trials or other promising therapies. Pharma has made a lot of $ from HIV, and am surpised no one is pursuing the larger ill population with M.E./CFS. Hope Universities, pharma, clinicians, NIH can coordinate, cooperate can get serious about curing M.E.!
I agree that $15 million is not enough. What I’m saying is that really major expansions like add a hundred million dollars to a diseases budget so far as I can tell require one of two things – extensive lobbying and a NIH wide agreement that the nation as a whole has a major problem – or some sort of scare (like anthrax) that gets the public’s attention.
It looks like Alzheimer’s is going to get a huge increase in funding this year but advocates have worked for years to Congress on board and there’s widespread recognition that Alzheimer’s is a huge and growing problem.
Neither is true in the case of ME/CFS. We have done very little lobbying and there is definitely not widespread recognition that ME/CFS is a major problem.
A $10 million dollar increase would mean approximately 25-30 new grants – each of which could be built on in the following years. Then maybe next year there’s another 10 million dollar increase and so on as the field expands.
In five years we’re looking at some pretty hefty research funding.
I don’t believe that the NIH will spend much more money on ME but on Fatique. It is a politic game.
Like so many, prior to the onset of this crippling illness I was a contributing member of society…I worked as an R.N. in an incredibly rewarding career, was a foster parent and a dedicated student of Yoga. Fifteen years later, I am writing this from my bed, riddled with infections and horrific signs and symptoms. I overheard my adopted son ask my husband the other day if he was going to lose another Mom (his birth Mother being the first) because I am sicker than he has ever seen me. This illness doesn’t need a token and incremental increase in funds over the years…some of us may not have those years to live. I don’t know what will make Government Agencies see us with eyes wide open. We are human beings who do not deserve to be minimized.
Hang in there Joy! You never know what is around the corner…