USA: NIH annual funding for ME/CFS research (discussion)

Andy

Andy

Retired committee member
NIH Funding for ME in 2020: Falling Flat
NIH funding for ME/CFS research should be increasing each year. Everyone agrees that this is needed. Instead, 2020 funding has flatlined. Worse yet, we are in danger of falling off several cliffs looming ahead.

The 2020 Numbers
Based on currently available numbers, NIH spent $11,696,985 on investigator-initiated grants and the Collaborative Research Centers in FY2020.** That is basically flat with 2019 and 2018 spending. Here is how 2020 compared to 2019. (I have previously covered the details of 2019 spending and a subsequent fact check).
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http://occupyme.net/2020/11/06/nih-funding-for-me-in-2020-falling-flat/
 
Collins lied to us. As is tradition.

My feeling is that there's just too much internal opposition to do any more than this but frankly that's not our problem, sort out your internal politics crap by yourselves, it shouldn't impact people's lives, this is completely unprofessional.

Remains to be seen how long it will take for Long Covid to have an impact but one thing that's been made perfectly clear is that until a pandemic causing a massive indisputable influx of cases we would have remained stuck buried in the shed behind the building. Nothing was going to happen until then. No one was willing to do anything to make any bit of progress. Not anyone in a position to do something about it anyway.

Biggest failure of expertise in human history. And growing. Not an easy feat, frankly. That takes incredible ideological dedication.
 
Yes, the explanation that seems to make sense is that too many at the NIH don't believe ME is a legitimate or important area of research. They've had enough time to set up a credible research program.

The intramural study to me seemed like the NIH wanting to see for themselves whether ME was real or not.

I'm not sure how anyone who is sufficiently informed can doubt that ME is not a natural entity (as sopposed to a diagnostic construct that attempts to describe something which does not really exist).
 
rvallee said:
Collins lied to us. As is tradition.

My feeling is that there's just too much internal opposition to do any more than this but frankly that's not our problem, sort out your internal politics crap by yourselves, it shouldn't impact people's lives, this is completely unprofessional.

Remains to be seen how long it will take for Long Covid to have an impact but one thing that's been made perfectly clear is that until a pandemic causing a massive indisputable influx of cases we would have remained stuck buried in the shed behind the building. Nothing was going to happen until then. No of progress. Not anyone in a position to do something about it anyway.

Biggest failure of expertise in human history. And growing. Not an easy feat, frankly. That takes incredible ideological dedication.
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I agree completely. I know some people are pessimistic about long-covid, but the research situation for ME/CFS is currently so neglectful that it barely takes anything to improve the situation significantly.

Europe and America have completely screwed up the handling of Covid to a almost unthinkable degree. The amount of people who will develop long term effects from this autumn and winter is going to be outrageous and now there are established long-covid communities, knowledgeable science journalists and curious researchers to pick them up and run with the ball.

Even if every single case of long-covid somehow ends up having nothing to do with ME/CFS. Then we'll still be able to leech off of research into concepts like fatigue, PEM and brain fog which are all symptoms that have been neglected by medicine. Not to mention all the incredible coverage we have gotten, thanks to amazing ME advocates, ME organisations, excellent journalists and empathetic long-covid patients. I mean we had a positive comment in Theguardian criticizing CBT and GET, a paper that for the past 5 years has been aggressively anti ME/CFS.
 
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"Notice of Correction to Specific Areas of Research Interest for PAR-20-168 "Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (R21 Clinical Trials Not Allowed)"
Notice Number:
NOT-NS-21-013
Key Dates
Release Date:
November 5, 2020"

Related Announcements
PAR-20-168 - Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (R21 Clinical Trials Not Allowed)

Issued by
National Institute of Neurological Disorders and Stroke (NINDS)

National Center for Complementary and Integrative Health (NCCIH)
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The purpose of this notice is to inform potential applications of a change to the Specific Areas of Research Interest for PAR-20-168 "Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (R21 Clinical Trials Not Allowed)". The Specific Areas of Research Interest have been modified to remove the IC-specific language for the National Center for Complementary and Integrative Health (NCCIH). This information was erroneously published in the FOA. NCCIH remains signed onto the companion FOA, PAR-20-165 "Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (R01 Clinical Trials Not Allowed)". This notice is effective for the February 16, 2021 receipt date and subsequent receipt dates. Please see changes to the FOA in Italics below.
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Section I. Funding Opportunity Description

Specific Areas of Research Interest

Areas of interest where scientific opportunities exist to meet the objectives of this funding opportunity cut across many disciplines. Proposed research should have relevance to the research priorities of the Institutes, Centers or Offices sponsoring this funding announcement. Specific considerations are listed below

National Center for Complementary and Integrative Health (NCCIH) - NCCIH will accept applications investigating the mechanisms by which complementary and integrative health approaches may improve ME/CFS treatment and/or ME/CFS comorbidity management. The proposed research may include basic and mechanistic studies in cellular systems or model organisms, as well as clinical mechanistic studies to develop improved complementary intervention strategies for ME/CFS and its associated comorbidities. Complementary and integrative approaches may include mind/brain-focused practices (i.e., meditation, hypnosis), body-based approaches (i.e., acupuncture, massage, spinal manipulation), meditative exercise (i.e., yoga, tai chi, qi gong), or natural products (i.e., botanicals, dietary supplements, probiotics), in isolation or in combination with conventional medical treatments. NCCIH will not fund applications examining clinical efficacy and/or effectiveness through this PAR.

National Institute on Alcohol Abuse and Alcoholism (NIAAA) -The mission of the National Institute on Alcohol Abuse and Alcoholism (NIAAA) is to generate and disseminate fundamental knowledge about the effects of alcohol on health and well-being, and apply that knowledge to improve diagnosis, prevention, and treatment of alcohol-related problems, including alcohol use disorder, across the lifespan.

Modified to Read:
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The bit in italics has been completely removed.
https://grants.nih.gov/grants/guide/notice-files/NOT-NS-21-013.html
 
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Regarding the "Notice of Correction to Specific Areas of Research Interest for PAR-20-168 "Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (R21 Clinical Trials Not Allowed)"

Is it a loss to not have studies on yoga, acupuncture, probiotics and the like? Probably not.
 
The hundreds of millions wasted on NCCIH continue to to eat our lunch, breakfast and dinner. That project has discovered on invented zero new, effective treatments for any disease. It’s an attempt to place a stamp of government approval on various forms of BS at the whim of Tom Harkin, an honest description of whom I can’t post in this forum. He was a US Congressman ... well, that’s bad language also, but the filter allows it ;-).
 
This seems misguided.





https://grants.nih.gov/grants/guide/notice-files/NOT-TR-21-013.html

NCATS is National Center for Advancing Translational Sciences, which seems very relevant here.

It's really weird how, of all professions, in medicine it's perfectly OK to just decline to do your job without a valid reason, especially when your job is very relevant to the issue. The dysfunction is incredible.
 
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Moved from this thread:
Possibility of ME or PVFS after COVID-19, Long Covid

Just want to mention about something that could be pretty significant. Joe Biden has announced a major change to the high-level breakdown of the US government, elevating a science office to cabinet level, giving this office far more influence than it would normally have. And a lot more in discretionary budget.

Forgot the name but the person named to the post is reportedly a famous geneticist. I would be surprised if he does not know of Ron Davis. There could be an open door to get friendly ears that can connect to mouths that can make a lot of things happen. I doubt there would be that much interest in ME itself or the chronic illness crisis, but Long Covid is still largely unheard of, a very minor topic that barely anyone thinks about. This could change things and snowball into bigger things.

Something for OMF and SolveME to work together on, perhaps. The payoff could be massive.
 
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I had the same thoughts. Eric Lander directed the Human Genome Project. There's a good chance he knows who Ron is and will listen to him.

The massive failure to contain the coronavirus will also create so many long haulers that it won't be possible to ignore the problem of infections causing disabling chronic illness in adolescents and younger adults. The harm caused by the false psych theories will be undeniable.
 
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"It is time, once again, for my annual NIH funding fact check. And, once again, NIH’s numbers do not add up. NIH claims to have spent $15 million on ME/CFS research in 2020. In reality, NIH spent slightly under $13 million.

Every year, NIH publishes its internal calculation of how much it spent on research in over 200 categories. These numbers are generally accepted as accurate and authoritative by Congress and the public alike. Over the years, however, I have found that the reported amount for ME/CFS does not stand up to closer examination as can be seen in this graph."

http://occupyme.net/2021/08/09/the-2020-nih-funding-fact-check/
 
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