For a while there it looked like ME/CFS was headed for a breakthrough at the NIH.
ME/CFS was looking pretty darn good a couple of months ago.
Led by Vicky Whittemore and Joesph Breen from the NIH, and Lucinda Bateman and Maureen Hanson, ME/CFS experts spent hundreds, if not thousands, of hours over the past year painstakingly preparing an 8-part Roadmap series and a 148-page document for the NINDS Advisory Council (NANDSC), which it signed off on.
The Roadmap emphasized the complexity of ME/CFS, how the “debilitating and severe nature of the disease” called for “urgent recommendations for additional research, small exploratory trials, larger controlled trials”, etc., and described dozens of research opportunities.
A 3-day December NIH ME/CFS conference was produced. Next, the Nath Intramural Study achieved its purpose when it identified (and validated) numerous pathways for future research. The project gave the NIH the strong footing former Director Francis Collins said it needed to more forward rapidly on ME/CFS.
Meanwhile, two CDC studies underscored how big of a threat ME/CFS is. One showed that ME/CFS was much more prevalent than thought and the other indicated that infections other than COVID-19 are producing roughly the same number of people with ME/CFS.)
The new NIH Director, Monica Bertagnolli, even came down from her Director’s perch to do a Q&A on long COVID and ME/CFS with Betsy Ladyzhets, a long-COVID investigative journalist.
It seemed like we were finally set up for a big win.
Expectations Derailed
Suddenly, ME/CFS is in worse shape than before.
We weren’t. The intramural study Collins said the NIH needed to move forward rapidly on ME/CFS produced no new funding opportunities. Then, one of the three ME/CFS research centers was dropped, apparently because the reviewers felt none of the applications made the cut. Now we were down to two.
Finding out how many applications were received for the research centers is apparently privileged information (?). if memory serves Nancy Klimas, who has received bountiful funding from the Dept. of Defense for GWI, has developed GWI animal models, successfully tested her models using them, and is in the midst of a large placebo-controlled trial, applied. If Klimas – one of the few ME/CFS researchers to also consistently get grants – did apply, how she missed out on getting a research center is beyond me.
It’s much worse than the loss of a single center, though. On paper, the funding for the 2 remaining research centers remains the same ($1.2 million) as when they started 7 years ago. Figuring in a 28% inflation rate, though, the ME/CFS research centers now have only a fraction of the resources they did when they began.
Keeping pace with inflation would have required funding of $4.7 million/year for all three centers. With the demise of one center, and no increased funding for the remaining two – the NIH’s ME/CFS research centers program is now getting $2.4 million/year – in real terms, it’s a 50% cut for the NIH’s flagship plan for reinvigorating ME/CFS research. This, in a research center’s program that was already considered so underfunded that several researchers felt it was not worth applying for.
Why couldn’t NINDS/NIAID at least bring funding for the remaining centers up to level? Was it money woes at NINDS (the National Institute of Neurologic Disorders and Strokes)? With the Brain Initiative losing funding, NINDS does have some money issues. It’s hard to believe these billion-dollar institutions care that much about a couple of million dollars that would go to support what everyone agrees is a struggling, vastly understudied disease – but read further.
Funding for some neurological disorders are predicted to drop in 2025, but the drops are small (Alzheimer’s -2%, Alzheimer’s related dementia -0.5%), and many neurological disorders are predicted to get more funding (Brain Disorders +5%; frontotemporal dementia (FTD) +2.5%; Huntington’s Disease +8%; Lewy Body dementia +1%; Parkinson’s Disease +3.6%; traumatic brain injury +5%). With NINDS dropping one center, it clearly had enough money to keep funding for the remaining centers up to par but chose not to.
The NIH does not project a drop in ME/CFS funding next year ($13 million), but the loss of one center’s funding ($1.2 funding) is equal to a 9% loss in total funding.
Drip, Drip, Drip
The history of ME/CFS at the NIH is of small wins, followed by a slow and steady erosion of support.
The pattern is a familiar one: the NIH does something once every ten years or so, trumpets how much it cares about ME/CFS, and then the interest and funding fades. It’s no wonder the field hasn’t grown. How could it? The NIH has never consistently committed to this disease.
After a couple of years of work, Anthony Fauci, in the early 2000s, closed NIAID’s (National Institute of Allergy and Infectious Diseases) 3 small ME/CFS research centers and cast the ME/CFS program out of NIAID, thereby rendering it homeless in the NIH
About 15 years later, Francis Collins reinvigorated ME/CFS research by launching three new ME/CFS research centers and Nath’s intramural project. It was a nice shot in the arm for an ME/CFS program that – at $6 million/year in funding – was at the lowest in decades. While Collins’s initiative about doubled funding, few noticed that he only brought ME/CFS funding to levels it had reached before. Collins was a big help, but he was no savior.
With Collins retired, the “Collins Effect” was over. Even though long COVID was raging – and ME/CFS had been closely tied to it – the next round of funding for the ME/CFS Research Centers saw roughly half the supporting Institutes stop funding it – leaving NIAID and NINDS to pick up the slack. As that happened, NIH funding for ME/CFS dropped by 25% over the past four years.
This wasn’t the only recent cut. In 2018, stating that its mission had been accomplished (?), the NIH ended the 15-year run of the one group that provided oversight for ME/CFS research at the NIH – the Chronic Fatigue Syndrome Federal Advisory Committee for ME/CFS (CFSAC).
Strangely Harsh Reactions
The GIST
- ME/CFS was looking pretty darn good a couple of months ago. ME/CFS experts spent hundreds, if not thousands, of hours over the past year painstakingly preparing an 8-part Roadmap series and a 148-page document, which the NINDS Advisory Council (NANDSC) signed off on.
- The Intramural study, which former NIH Director Francis Collins said was needed for the NIH to move forward more rapidly, provided strong leads. Two CDC studies greatly increased ME/CFS prevalence and suggested that anyone with an infection was at increased risk for the disease.
- The Intramural study, however, produced no new funding opportunities. Recently, one of the three ME/CFS research centers was dropped because the reviewers felt none of the applications made the cut.
- Because the NIH did not keep pace with inflation and eliminated one center, funding for the NIH’s flagship program for reinvigorating ME/CFS research – the research centers – is now down by 50% – essentially crippling the effort.
- The pattern is a familiar one: the NIH does something once every ten years or so, trumpets how much it cares about ME/CFS, and then the interest and funding fades. It’s no wonder the field hasn’t grown. How could it? The NIH has never consistently committed to this disease.
- Anthony Fauci closed 3 ME/CFS research centers in the early 2000s, and even worse, cast the ME/CFS program out of the NIAID and into the wilderness. Funding, not surprisingly, tanked and tanked until it reached its low point ($6 million/year) just before Francis Collin’s reinvigorated ME/CFS research.
- Collins did reinvigorate ME/CFS research but only to a point it had reached before. When Collins retired, the “Collins effect” disappeared and in the next round of funding, about half the Institutes stopped supporting the centers. Over the past 4 years, NIH funding for ME/CFS has fallen by 25%, yet the NIH has done nothing to reverse that trend.
- In 2018, despite what must have been its miniscule funding, the NIH suddenly shuttered the 15-year federal advisory committee on ME/CFS.
- Despite the fact that the NIH saved money by eliminating one ME/CFS research center, it failed to boost the funding for the remaining 2 centers, leaving them even more resource poor. With the loss of one center and reduced support in real terms for the other two centers, the NIH’s big effort with ME/CFS – the research centers program – is a shadow of its former self.
- This comes on top of the dramatic reduction in the size of the other leg of Collins’s effort – the Nath Intramural study – which started small and got much smaller when the pandemic hit. Does the NIH recognize how much it has overpromised and underperformed for the ME/CFS community?
- There is some good news: an upcoming blog will show that NINDS will soon launch a new grant opportunity that includes long COVID, ME/CFS, fibromyalgia, POTS, and other illnesses, and Vicky Whittemore is working on a funding opportunity for ME/CFS. Time will tell how much funding they will come with.
- Overall, the news is not good regarding long COVID and the NIH either. Left to itself, the NIH rode out the first years of long COVID without producing any funding for it. Funding did shoot up to $70 million and then to $130 million recently, but most of it is not going to study the ME/CFS-like long-COVID subset.
- Only 30 of the 160 long-COVID projects might help us understand ME/CFS-like long-COVID biology. The studies are scattershot, with several major areas of research (autonomic nervous system, exercise physiology, metabolism) not or hardly represented.
- Instead of proactively addressing long COVID, I could find only one grant package focused on it, and the NIH has produced only 9 actions related to it. Compare that to the nearly 500 actions produced for diabetes and HIV. One would never know a disease of long COVID’s scope had occurred by looking at the NIH’s activity.
- The situation regarding ME/CFS and long COVID, though, provides clarity. Moving rapidly with these diseases will require going outside the NIH to Congress to force the NIH to meaningfully address them.
- Thankfully, that is happening with the $10 billion/10-year-long COVID Moonshot bill that would give long COVID, ME/CFS, and other post-infectious diseases the kind of steady and significant support needed to move them forward. Absent that, we’re on a 20-30-year glide path with the kind of support the NIH is currently providing.
- How to support the Moonshot effort will be the subject of a future blog.
You have to wonder what about ME/CFS has triggered such strong reactions and such harsh steps. Its funding, after all, is infinitesimally small – essentially a rounding error – on these Institute’s billion-dollar Institute budgets. (NINDS and NIAIDS budgets this year were $2,698,925,000 and $6,562,279,000.)
Did NIAID really have to kick ME/CFS out and close down all three research centers some twenty years ago? That’s a drastic move. As Fauci surely knew it would, it doomed ME/CFS funding at the NIH for the next 15 years. (Fauci now calls for much more ME/CFS funding (lol)). Why did the NIH feel the need to tank CFSAC – the longstanding ME/CFS federal advisory panel – in 2018? It’s funding must have been minuscule.
Now with the loss of one center, and reduced support in real terms for the other two centers, the NIH’s big effort with ME/CFS – the research centers program – is a shadow of its former self. This comes on top of the dramatic reduction in the size of the other leg of Collins’s effort – the Nath Intramural study – which started small and got much smaller when the pandemic hit. Does the NIH recognize how much it has overpromised and underperformed for the ME/CFS community? Does it have any sense of the historical record?
There is some good news. Bronc’s next blog will show that NINDS will soon launch a new grant opportunity that includes long COVID, ME/CFS, fibromyalgia, POTS, and other illnesses, and Vicky Whittemore is working on a funding opportunity for ME/CFS. We don’t know what kind of funding is involved, but that’s a good trend and we’ll see that it involves. Right now, though, the NIH’s ME/CFS research effort has once again been hobbled.
Warning For Long COVID
Warning: Left to itself, the NIH has done little for long COVID.
If people with long COVID somehow think the ME/CFS saga doesn’t apply to them, think again. It ALL applies. The NIH, almost certainly unintentionally, is built in such a way as to reward big, well-established illnesses and thwart new or emerging illnesses.
That’s clear given its remarkable underfunding of long COVID’s sister diseases: ME/CFS, fibromyalgia, irritable bowel syndrome, migraine, post-treatment Lyme disease syndrome, endometriosis, postural orthostatic tachycardia syndrome, and other women-dominated complex illnesses. As with long COVID, these diseases produce high levels of fatigue. pain and disability but often don’t kill.
In “An Open Letter to the Long COVID Community from a Person with ME/CFS” in early 2020, I warned the long-COVID community not to make my mistake and assume that if I was young and healthy and had a bright future ahead of me – and then suddenly got really sick – the NIH would be there for me. I asserted that the long-COVID community needed to aggressively advocate for support and it did.
Long COVID, ME/CFS, and other disease communities did band together and got Congress to pass the $1.15 billion long-COVID bill which produced the RECOVER Initiative. Five years later, the Biden administration added $500 million to the pot. Everyone pretty much knows how RECOVER has worked out thus far, but what few people know is what the NIH, left to itself, did for long COVID.
The NIH and long COVID Without Outside Support
Left to its own devices, it did little. This is what long-COVID research at the NIH looks like four years after long COVID emerged.
Like ME/CFS, long COVID is still homeless at the NIH.
Long COVID is still homeless – Long COVID, like ME/CFS, remains homeless at the NIH; i.e. it is not the responsibility of any Institute at the NIH. This is serious business. The heart institute (NHLBI) is responsible for heart disease, the immune institute (NIAID) is responsible for AIDS and multiple sclerosis, the arthritis institute (NIAMS) is responsible for rheumatoid arthritis, etc. Being ensconced in an institute is not a panacea (look at fibromyalgia funding) but until long COVID is ensconced in an Institute, it will never get the support it needs.
Low Funding – the NIH, not surprisingly given its history, had a late start to long-COVID funding. As other countries quickly poured money into long COVID, the NIH sat on the fence. No long-COVID funding was listed for 2020/2021, but long-COVID funding got a big boost in 2022 ($70 million) and then another in 2023 ($132 million). Funding is predicted to decline to about $110 million in 2024/2025, but one hundred and ten million dollars is a nice chunk of change.
Unfortunately, a deeper dig into the funding indicates things aren’t looking so good if you have the ME/CFS-like kind of long COVID. Many of the studies emanate from researchers concerned with the effects of COVID-19 on their diseases or conditions. Studies on long COVID’s effects on diseases like HIV/AIDS (3), Alzheimer’s (8), asthma, obesity, rheumatic diseases, the elderly (3), pregnancy (3), alcoholism (3), kidney disease (2), diabetes, and cancer litter the long-COVID funding.
Many other studies focus on aspects of long COVID that don’t concern the ME/CFS-like subset such as lung, kidney, and heart damage.
Of the 160 projects listed, I found only 31 that might increase our understanding of the ME/CFS-like subtype of long COVID. That’s a drop in the bucket compared to what’s needed to understand this complex disease. The funding was scattershot with large areas of long COVID (autonomic nervous system, metabolism, exercise physiology, lipids, genetics, microbiome) hardly or not addressed.
Little Infrastructural Support – The NIH invites researchers to apply for specific areas using Requests for Applications (RFAs). RFAs are popular with researchers because the NIH provides set-aside funding with them.
By now, given the impact long COVID has had, one would think the NIH would be overflowing with RFAs that invite researchers to explore the roles the nervous system, the autonomic nervous system, the cardiovascular system, the immune system, pathogens, etc. play in long COVID, yet I could find only one RFA, “Understanding Neurological Effects of COVID-19 and Post-Acute Sequelae of SARS-CoV-2 Infection (R01 Clinical Trial Optional)“, focused on the biological aspects of long COVID. (Another one from NINDS is expected to be published in the next month or so.)
Similarly, the “Acting Funding Opportunities and Notices” list provides a snapshot of how active a role the NIH plays in a disease. Compare the 9 (mostly notices) actions for long COVID to the 915 for diabetes and 949 for HIV/AIDS. Nine funding opportunities/notices are not a sign of an institution that is in any way actively engaged with long COVID. A historian charting the history of disease in the US would never guess that a disease affecting 10 million people, and costing the U.S. economy $3.7 trillion, was sweeping across the U.S.
That’s what you get from the NIH absent Congress telling it to get its act together and shoveling it a lot of money.
Clarity!
The situation provides some clarity: if we want rapid progress, we have to go to Congress.
ME/CFS and long COVID’s situation at the NIH may not be a happy one, but it does provide a certain clarity – don’t count on the NIH if you want meaningful and consistent support. Maybe the NIH will get there at some point, but right now it’s on a 20 or 30-year glide path for success. To get to the promised land in a time frame that is anywhere close to acceptable, we’re going to have to go outside the NIH – and that means going to Congress – to make the NIH move on these diseases.
Thankfully, that is happening. Two bold and game-changing efforts are underway to finally get long COVID, ME/CFS and allied diseases the resources they richly deserve.
The $10 billion Moonshot bill is an incredible effort to provide $1 billion/year for long COVID, ME/CFS, and other post-infectious diseases. It would give long COVID, ME/CFS, and allied diseases the kind of funding that people with ME/CFS, in particular, have yearned and fought for for many years but have never had. Passing the bill would constitute a seminal moment in the history of these diseases. Health Rising recently provided an overview of the Moonshot bill – next we will provide a way to support it.
The effort to produce a Center for post-infectious disease research would, likewise, allow researchers, for the first time, to tackle these diseases in an organized fashion. The NIH, after all, doesn’t willy-nilly study heart disease – it houses its heart disease research in one Institute. In order to get moving, we need to develop a similar kind of organized approach that fosters collaboration and creativity.
- Next Up – how to support the Moonshot bill.
Cort, you’re an excellent journalist, and I think you should explore how a small team from UCSF has achieved more in basic science than a $1.5B NIH program with hundreds or even thousands of researchers.
It’s remarkable that this team will be the main guests at the RECOVER-TLC meeting later this month. It really highlights how having clear, focused goals can outshine being “too big to fail.”
They’ve also announced plans to extend their research to ME/CFS, showing how much progress can be made when the right people lead the way. It’s a compelling story.
I would LOVE to interview them! I’ve done a couple of blogs on the LIINC team and they are exciting indeed. Thanks for the tip about the conference – I just signed up. You’d think I’d be in the loop with all this stuff but I’m amazed at how out of the loop at times – I had no idea it was happening.
may i ask what/who UCSF is? I am from Belgium…
Probably University of California at San Francisco.
thanxs!!! but how muct one university/clinic solve all the deseases? that is just impossible…And they will not have much money to…
Yes, one of the best medical universities in the States.
Whatever happened with ARPA-H, was hoping that would bring change but haven’t heard about it in a while
Aside from that one Long Covid bill from May this year I couldn’t find much about ARPA-H and Long Covid or ME
ARPA-H seems to have disappeared from the discussion, that’s for sure.
I actually interviewed with them to run an ARPA-H Long COVID program earlier this year. They were super interested, but my program didn’t “gain traction” on the hill.
I’m not very qualified as I’m in tech, but they mentioned that sometimes cross-industry is very successful.
I have high hopes for RECOVER-TLC to play this role. The right people seem to now be involved 4 years later.
NIH is performing exactly as expected.
NIH doesn’t work for ME/CFS patients. They work for Swiss Re and Unum.
As an ME/CFS patient, we live in a world where people in authority tell lies about us all the time.
The best thing you can do for yourself is to not lie to yourself about who is on your side, and who is not on your side.
ME/CFS needs a diagnostic blood test and successful clinical trials in order to succeed with FDA votes for treatments.
We need Congress to pass a bill that boxes the NIH into funding a diagnostic blood test for ME/CFS – because of LongCovid.
We need Political Advocacy to push Congress people to write and pass such a bill because millions of ME/CFS patients and LongCovid patient won’t stop writing them asking for Extramural NIH funding for a diagnostic blood test for ME/CFS – cause it’s never going to come from inhouse.
While I would never wish harm or illness on anyone I’ll bet the NIH would be a lot more proactive towards CFS/ME and long COVID research if the NIH admins were to be stricken by these diseases…
I’ll be that has been responsible for so much of the movement in this disease: a family member or friend gets sick. We probably go the $1.15 billion for long COVID because of Tim Kaine’s experience with it.
Forget about NIH, they don’t care and these public agencies only research what insurance companies and doctors allow them to research.
Privately funded research usually gets much better results, in shorter time and with a smaller amount of money.
Yet with private Foundations there’s much, much less funding – particularly with ME/CFS where wealthy donors are hard to find. I can only think of one offhand – the ARAM Foundation.
If you have a chronic illness there’s no getting away from the need of the NIH”s support. Even at the present low levels it’s still easily the biggest funder of ME/CFS research and most of it is very good indeed – look at the all the work Hansen’s Cornell group has done – to explore what’s going on during exercise.
As always, thank you Cort for the amazing job you do at keeping this community informed.
Relying on the NIH for funding has proven to be a path of continuous disappointment for too many years. In order to move this needle, there absolutely has to be more political advocates taking charge. There is power in numbers. The US Congress does, at times, listen to its constituents. There needs to be an organized and well thought out effort to contact Congress members in every state. It needs to be easy directions for ME/CFS patients and their friends and family members to follow so that every Congressman receives letters/phone calls/emails regarding NIH funding needs. I would be honored to help work on this initiative but don’t know where to start or who to contact. I was the former Head of Drug Safety at one of the largest pharmaceutical companies in the world prior to ME/CFS. I have skills that may be applicable (on good days that is) and I want to help.
Contact Solve ME (https://solvecfs.org/advocacy/) or ME Action (https://www.meaction.net). Solve ME hosts an annual advocacy week where patients do things like meet with their representatives. There is already a lot happening, I’m sure they would be glad to have your help and experience.
Thanks!
I am looking for this!
“There needs to be an organized and well thought out effort to contact Congress members in every state. It needs to be easy directions for ME/CFS patients and their friends and family members to follow so that every Congressman receives letters/phone calls/emails regarding NIH funding needs.”
and haven’t found it yet. From what I heard the campaign is just now really beginning to start up and is being led by the many organizations that have signed up to support it. (Health RIsing is one of them but we don’t have the capacity to smoothly run and advocacy campaign). There is no central organized effort unfortunately.
Solve ME said they put our an alert and #MEAction put one out recently. I hope we’ll see more of that. This bill has the potential to cure our longstanding funding woes – I’ve never seen anything like it.
Thank you Jill! That’s exactly the type of help we need to get this before Congress. If we don’t act as a large cohesive group we’ll never have enough sway to get Congress to act!
Thanks again Cort for keeping us well informed on NIH’s indifference to our debilitating illnesses. OMF just released videos of 1st International Conference on ME/CFS and Long Covid in Portugal. Talks include Systrom, Hanson , Berquist, Bateman etc.
I am curious who at NIH makes the decision on which grants are accepted for these debilitating illnesses.
it is all so sad, 30 years of severe illness (ME/cfs), decades also for others, other deseases… the researchers are there but the money, the NIH, etc not… takes miljons, billions for a desease and verry long time, look at breastcancer…
The belief that we will one day uncover the definitive cause of ME/CFS may be an illusion. Hope keeps us searching in the unknown, but it has never been enough to solve medical mysteries. Real progress must come from clinical professionals committed to thoroughly examining patients for the 1,881 diseases potentially related to ME/CFS. Even with such dedication, we may only end up treating individual symptoms while the root cause remains elusive.
https://www.malacards.org/search/results?q=ME%20CFS
This blog is a confirmation of the previous topic. Hope doesn’t pay a bill and doesn’t solve anything. Hope is disappointment deferred.
I used to be naive about the political process until two things happened: 1) my husband was a lobbyist for the public school system for nine years and 2) A bill was signed into law in 2016 requiring the VA to fund studies on birth defects in the children of Vietnam and Gulf War veterans.
When I went to our state capital to see how things worked and what my husband was working on, I learned the sad truth. You could tell which way a state senator or representative was going to vote by seeing the awards on their walls. A bill to inform farmworkers about the pesticides they were going to be exposed to in the fields was soundly defeated. Another bill for a license tag to support public education took three years to pass and only after other issues were attached to the bill.
Bills are one thing, but you would think a law has teeth. Not so, if the powers that be don’t want to do what it mandates. The Toxic Research Law signed by former President Obama in 2016, said that the VA should fund studies on male-mediated birth defects. Two scientific panels were appointed to evaluate this and both recommended the studies. But, nothing has been done because too many children are potentially affected and the cost would be too great to help them.
Now think about ME/CFS. If they determine a cause and develop a blood test, the costs to the insurance industry and Medicare could be catastrophic. These agencies have power and can subtly influence issues in ways you can’t imagine.
But all is not lost. The organization I direct got a drug that was causing children to be born with missing limbs off the world-wide market We also helped a community with a cluster of cleft palate cases. Solvents buried in an unlined landfill were leaking into the water supply that was connected to the main community water well. After collecting data and contacting the EPA, the landfill was capped and the source of water was moved. The CDC also confirmed the cluster we had found.
In addition, we discovered a rare cranial facial birth defect in the children of male veterans from the first Gulf War. (This increase was later verified by a DOD study.)
In 2009, we presented a report to a national autism conference suggesting that maternal acetaminophen might be the triggering agent in many cases of autism. By 2013, there were 16 published studies confirming this association. Another study just was published.
We have done all this on a very small budget. We didn’t wait for the to government do it. We created a national research project with a team of scientists and we dug in and did the research ourselves.
Hi Cort, I’m supposed to be in 3 days of NIH zoom meetings on the future of RECOVER between Sept 23-25. I appreciate your exposition here. I’m also open to other thoughts on how RECOVER can… um recover from the missed opportunity of spending a billion dollars and finding out comparatively little. Can you share where you found and reviewed the 160 projects on Long COVID? Were you using https://clinicalstudies.info.nih.gov ? I chaired an advisory committee for PCORI for two years and saw clearly that their rare disease mandate and their comparative effectiveness research mandate were at odds and impeded research into rare diseases. So I can see how no institute at NIH owning Long COVID could leave us forever scrambling. I’m open to hearing from you or any other thoughtful voice before I go in to these meetings — since I intend to pass along the concerns I have and those I hear about. Thanks for your thorough and helpful body of work! Doug
Hi Doug – thanks and good luck!
I went to Project Reporter – https://report.nih.gov/funding/categorical-spending#/ For some reason the page only goes down to the A’s right now (lol) then down to PASC. Then I clicked on the link for the number of projects this year.
Hopefully you have read Ryan Turner’s articles including https://www.lymedisease.org/ryan-prior-new-nih-office/
Also check out Solving MS’s Accelerate Regenerative Medicine Act (ARMA)
Whitepaper on
Legislation to Address the National Emergency of Infection-Associated Chronic Conditions, Autoimmune Disease and Neurodegenerative Diseases
From: info@solvingms.org SolvingMS a patient-led 501(c)3 nonprofit
Date: May 09, 2024 Updated: Sept 18, 2024
Subject: Patient-Led Legislation to Accelerate Regenerative Medicine and Clinical Trial Support for the Infection-associated Chronic Illnesses of Long Covid and Autoimmune Diseases.
Link to share this whitepaper: https://bit.ly/Accelerate_Regenerative_Medicine_Act
Can there be legal pressure on the NIH to fund women’s health equally? Nature showcases how unequal funding is for men and women, outside of ME/CFS too: https://www.nature.com/immersive/d41586-023-01475-2/index.html. Has this been tried in the past? It surely can’t be legal?
NIH recently added a new office the Office of Research Women’s Health!!!
“To accelerate progress in this area, in 2022, the U.S. Congress directed NIH to establish an Office of Autoimmune Disease Research within ORWH…”
Read more about this new office here:
https://orwh.od.nih.gov/OADR-ORWH
More about the mission to promote research in Women’s Health:
https://extramural-diversity.nih.gov/ic-pages/office-of-research-on-womens-health
New NIH Director, Monica Bertagnolli is less than useless – just like the entire NIH.
She sat giving bold faced lies in front of congress and senators who expect results from her specifically in Long Covid after the embarrassment of the RECOVER Act. She’s absolutely abysmal and won’t last long.
We must put our focus and efforts on supporting other countries. Only hope we have.
I am confused?? I was thinking the 3rd center was Stanford’s group. But how come there is a center dropped? I understand Cornell and Columbia still stands.
Yes, Cornell and Columbia still stand: apparently the applications for the 3rd center did not pass muster – something that astonishes me – according to the review panel.