Overview of NIH grants for ME/CFS research

I'm looking forward to the muscle biopsy data that Wust et al are analyzing and whether muscle pain is a contributing factor to the development of post-exertional malaise. My understanding is that 30% of pwME don't experience pain. I don't.

 

Are your muscles tender to touch, especially during PEM? Pain is also not one of my major symptoms, but if I'm in bad PEM I can barely palpate some of my muscles, particularly in certain areas.

 

No my muscles are not tender to touch in delayed PEM, never in 33 years and no matter how severe I am. They might at times burn and feel a little sore though when I stand up for too long. Only sometimes they feel a bit sore when I'm feeling 'viral' after overdoing, not necessarily in PEM but that could be a separate issue.

 

@InitialConditions That list of similar projects is interesting. There are even more if you scroll that window.

It would be nice to highlight currently funded projects by NIH. I don't have the energy to properly document these in the right thread unfortunately, and sum up the total spending. There are two projects highlighted with a UK PI.

* Lipkin's Colombia University ME/CFS Center (multiple entries)
* Hansons Cornell ME/CFS center (multiple entries including muscle study with Systrom & Wust)
* HHV6B LSHTM study (UK ME Biobank team)
* Development of humanized microbiota mouse models of ME/CFS, Vincent Lombardi, University of Nevada, Reno
* Red Blood cell study, UC Davis collaboration with Stanford.
* Correlating neutrophil function and plasma cytokine profiles with progression of ME/CFS and Long-Covid/PASC, Mass General Hospital
* ATG13: A new player in ME/CFS, Simmaron
* Genotypic Analysis of ME/CFS, Chris Ponting, Colombia
* Cerebral Energy Metabolism in ME/CFS with and without PASC, Mount Sinai
* Altered T Cell Responses in Myalgic Enchephalomeylitis/Chronic Fatigue Syndrome (ME/CFS), Selin
* DMCC for ME/CFS, Research Triangle (almost $800K)
* Mechanisms of Cognitive Control Impairment in ME/CFS and PASC-ME/CFS, Mass General
* A Cardiovascular Analysis of Post-exertional Malaise., Naatelson, Icann
* Maintenance and Incidence of ME/CFS following Mono, Jason, DePaul
* Stress effects on virus protein induced inflammation and sickness behavior, Ariza, Ohio (Year 15!, EBV & HHV6 in ME/CFS)

It looks like Jarred Youngers 5 year R01 grant for neuroimaging expired in 2023.

 

Perhaps we need a general NIH awards/grants thread, if we've not got one already.

 

I’m generally in some type of low to moderate pain but very occasionally it’s disappeared (when medicating for something else painful) it’s really strange (to me) to feel fatigue with no pain. And weirdly, disappointing to still feel so rubbish despite having no pain. I doubt either of us has it worse than the other you know, just different flavours of the same poison.
On topic - this all looks very promising.

 

I am resurecting this thread to keep track of NIH grants/awards following discussions in another thread. Perhaps we can move this thread to the 'ME/CFS research news' subforum and use it to keep track of NIH awards....??

 

I've tried to make an overview of ME/CFS studies that received NIH funding in 2024. I've only included studies whose primary focus is ME/CFS - it's likely that ME/CFS is included in other projects such as those on Long Covid or other related conditions.


EDIT: This post has been updated. I originally missed some studies and some were counted twice.


Although the number of projects has increased, I think the funding amount has not because some the ME/CFS centers have disappeared except for the one at Cornell University and Columbia. Adding up the funding for the projects listed below, I got a total amount of 10.1 million (the NIH lists 13 million as estimate for 2024, which probably includes studies where ME/CFS is more of a side-project or control group). In 2020 I made a similar overview and got a total of 11.7 million for ME/CFS research.



The colours are used to highlight funding going towards the same institution.

EDIT: plan on writing a blog post/Twitter summary on it if health allows.

 

Thanks, @ME/CFS Skeptic - good to see that Chris Ponting got some money off them!

 

Seems like I overlooked some projects, will update the list later on.

 

Thank you for doing this @ME/CFS Skeptic and updating the list with missing projects

 

I wonder what happened to the Shungu NAC clinical trial at Cornell. It is meant to be a 5 year study but didn't receive it's 5th year of funding in 2024.
Mechanistic Assessment of N-Acetylcysteine as an Antioxidant Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Through Dose Response and Treatment Target Engagement

Study completion is meant to be April 2025
https://clinicaltrials.gov/study/NCT04542161 (Study status updated May 2024)

EDIT : Report from IACFS/ME conference:

 

Made a summary blog post here:
https://mecfsskeptic.com/nih-funding-for-me-cfs-in-2024/

Social media summaries:
https://twitter.com/user/status/1860307848137228617

https://bsky.app/profile/mecfsskeptic.bsky.social/post/3lbmkj6ux632t

 

Excellent post. It really highlights how little basic biomedical funding there is for ME, while still showcasing some fascinating studies we will get results from in the coming years.

To see the whole of basic biological research summarised well in such a short article, really highlights the sort of drop in the bucket, we are getting funding wise, compared to what is needed.

 

I think the list also shows that an NIH grant is a realistic goal. It's not like EU Horizon Europe grants that only go to big consortia with top institutions from multiple different countries involved. Avik Roy got funding for a speculative mouse model with only some very preliminary data and he is located at a small institution like Simmaron Research. The same applies for Lombardi. Lacerda got funding even though she is located in the UK.

 

I have no personal experience with this but I think that the most effective use of charity funding for ME/CFS research in the US would be to lure and support scientists in applying for these bigger NIH grants.

You can use charity money to help them get preliminary data and in writing many proposals but one of the main targets should be to eventually get grant funding from the big funders like NIH. If they get rejected, you can try to keep the research team afloat by charity funding but IMHO getting bigger grants and funding from elsewhere should always be one of the main goals.

I think Solve ME/CFS works like this, for example, with Yared Younger getting an NIH grant for work that they supported. Not sure if OMF works the same way. Sad to see no NIH grants for the Stanford group this year. I hoped they would get funding for a ME/CFS research centre now that the one at Jackson Laboratories stopped.

 

Yes Solve ME seems to do stuff like this. They also hire annual lobbyists to the US government. I think they are the most institutionalised and therefore connected ME charity to the government/NIH.

Although they have (I think) funded dodgy studies in the recent past, the “stem cell therapy” for example.

 

This is from a Health Rising article interviewing Vicky Whittemore from NIH about two new funding opportunities NIH intends to publish that will be open to ME/CFS research:

Links for intent to publish documents:
https://grants.nih.gov/grants/guide/notice-files/NOT-NS-24-105.html
https://grants.nih.gov/grants/guide/notice-files/NOT-NS-24-108.html