The Intramural NIH study and the NIH Research Centers are a kind of dodge. Yes, they’re tasked with, and will provide, new insights into ME/CFS, but their real purpose is to do one thing: to get individual researchers to write more research grant proposals. That’s because most of the NIH’s money goes to individually funded grant proposals.
The problem, it turns out, is mostly us…
The ME/CFS community has long assumed that the problem is the NIH. The NIH IS a problem, but the truth is is that the real problem is probably us. A Freedom of Information Act request revealed that loading grant review panels with ME/CFS researchers did not increase the number of grant applications; in fact, it’s possible that the number of applications has declined. That was a shock, since for more than a decade, we’d assumed that poorly representative grant review panels were keeping ME/CFS researchers from applying for grants.
Until we crack the low grant application problem we’re going nowhere as a field. Check out the real problem with ME/CFS funding on the IACFS/ME website.
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I’m wondering if Ron Davis and some of the other preeminent researchers who have applied in the past might consider re-applying now. I sure hope so. It seems a terrible shame that NIH is now saying they will fund more grants if they have more qualified applications, and so few applications are being submitted.
The good news is that 10 groups applied for the research centers grant and only three will get funded. That’s actually not good news – but there is a silver lining – the seven groups that don’t get funded will should have at least 14 grant applications ready to go – so we SHOULD see a major uptick in applications and hopefully funded applications next year.
That’s a one-time event though. We need consistent increases in grant application rates over time.
Ron, perhaps because of the nature of his grant, applied to a different panel than the CFS review panel.
Why are only 3 getting funding, why not all 10? It is great to know that there is a ME friendly panel, thanks Cort.
You do such a great job, Cort. May we have you fighting for all of us for a long time!
Thanks Cathleen! I certainly hope so.
No the problems with CFS/ME Funding is No one including most Physicians think we have a real ILLNESS.
!!!!
Yes, Carole I agree – that is the REAL problem; if the NIH and doctors and researchers agreed that this is a real, serious illness – if they really got that – we would have funding…
Convincing them of that is key….
I take Leonard Jason’s comments at the IACFSME conference at face value. Leonard Jason is on all the important NGO and government ME/CFS committees in the US and Canada and is a prolific researcher. He said that by FAR the most NIH money for ME/CFS research is psychiatric. He should know; that is his specialty. Broderick’s as well. If you read Broderick’s webpage at NOVA, his research for CFS (note; not ME, not ME/CFS but “CFS”) is focused on a simple pharmaceutical pill which will hopefully change mind/body behaviour.
Any researcher who says “(whatever they’re researching) starts in the brain” is a researcher who focuses on psychiatric causes of ME even if they say they’re not. They justify denying they’re focusing on psychiatric by saying it’s not a mental illness, it’s the brain taking over the CNS and then the body because of “faulty” or “overreactive” or overprotective brain signalling. They keep inventing new gobbeldygook all the time and it’s time we wised up about so-called ME/CFS researchers. Even Nancy Klimas has pursued the theory that the body’s immune system can be hijacked by the brain.
Here’s a question to ask these ME/CFS researchers who focus on “VO2 max” and glia cells etc. Do they believe our brain is setting our VO2 Max or do they believe our muscles are not responding to us because of physiological reasons? Here’s a hint as to what their answer will be: they keep saying that our body is “preserving” itself when we fatigue.
That’s the brain, not a physical theory.
Please read the following article to understand what I’m saying.
https://www.theglobeandmail.com/life/health-and-fitness/fitness/the-brains-the-boss-when-it-comes-to-oxygen-uptake/article543438/
If ME/CFS researchers believed our muscles don’t respond for physiological reasons, their studies would be different. Instead they’re doing the same studies over again on different angles. They feel no reason to see if our cells are being poisoned by petrochemicals or if we have an underlying connective tissue disease, etc. which would be easy to study. They pay almost no attention to muscle weakness and diet, toxic exposures, etc. unless they’re looking at Gulf War patients.
Are you sure that’s what you heard? That most NIH money is for psychiatric research? If you check NIH funding for ME/CFS you’ll actually find that little of it is – https://projectreporter.nih.gov/reporter_searchresults.cfm
Actually the exercise research is starting to go in the direction of findings autoantibodies to the blood vessels.
I just don’t agree that brain research is automatically psychiatric. What about Alzheimer’s or Parkinson’s or multiple sclerosis? Lots of brain research there…Couldn’t ME/CFS end up being aligned with them?
I do not believe that there are no good scientists for ME/CFS. So why is the NIH not funding more research and larger research? Even their own intamural study is on only 40 patients and only the subset of a proven infection in the beginning while there is now a beginning evidence for other subsets. I have many questions about the NIH and their willingness to do really support regourus research.
Their willingness is better but its still not so great. I would love to know why. I don’t think we know actually. There’s a lot about the NIH and how it works that we don’t know. It would be good to find out, though.
It takes two to tango though and we really do need more researchers to submit research grant applications for this to work.
What about the fact that brilliant, highly-motivated researcher at Stanford, Ron Davis, had his grants stopped by NIH after 27 years of getting funding. His grants were criticized by an NIH official. He probably writes fantastic grants.
And his son is gravely ill and he is motivated to find causes, biomarkers and treatments. When he told NIH he was coming up with low-cost diagnostic fools, he was told that the agency doesn’t care about health care costs!!! Huh?
Then his grant funding was terminated when he is making progress.
I’d like to know the real story here, why Ron Davis and other scientists aren’t being funded, and why the amount allocated to ME/CFS research is so low.
Also, on the brain research, I hope it’s not for psychiatric research. But I’ll say that early on in my disease, I could not be near fluorescent lights or yellow or red colors. I got instant headaches. Now I have to worry about glare.
But I have a symptom that may be unique: I get instant headaches from seeing black-and-white geometric patterns in tile, clothing, on TV. And I can’t tolerate fast movie clips or flashing lights online, etc. I’ve been told these are manifestations of brain disease or malfunction.
So, if there is brain research, it may not be on psychiatric issues. Who knows?
Good questions. I can tell you that grant applications are very low – but why an acclaimed researcher like Ron Davis can’t get his grant approved – well, that’s a very good question.
Like my old friend Pangloss used to say, “Tout va pour le mieux dans le meilleur des mondes.”
Cort, please don’t ignore the 30 year history of why grant applications are low. Anyone who thinks the NIH is neutral let alone positive on ME applications should read the NIH records released — only after the Burmeisters risked $150,000 on a suit to enforce the FOIA Americans are entitled to by law — showing just how much NIH hates PWME and ME researchers. Don’t forget that Steve Straus sat on almost every review committee and rejected almost every ME paper for nearly 20 years — including holding up Dr. Komaroff’s crucial epidemiology study for 18 months and preventing NEJM from giving the important paper the wide circulation and high profile it was due. That’s just a few emblematic phenomena. To quote a certain brilliant NIH researcher at a 2013 conference “They Hate You.” And remember Oscar Hammerstein’s lyrics in the 1947 Broadway musical South Pacific — “You have to be carefully taught to hate.”