Overview of NIH grants for ME/CFS research

Does anyone have a good overview of grants from the National Institutes of Health (NIH) for ME/CFS research and how much money each grant is receiving?

If I recall correctly, Jason/Katz got funding to follow up on the adolescents who got ME/CFS following EBV, and Younger got a grant to test his preliminary results on a bigger scale. But there must be others.

I thought it would be useful to get a quick overview of these grants. Grantome seems to be a useful tool for this. https://grantome.com/search?q=chronic fatigue syndrome

 

This could be useful https://projectreporter.nih.gov/reporter.cfm

 

I can't suggest anything, but I have been trying to get the NIH categorical spending webpage up for some time now, but there's always a message saying "temporarily unavailable". I guess most of us are only on this planet temporarily, so it could be quite a few years yet.

 

The quickest way to get an overview of the ME/CFS research the NIH funds is probably to go to the categorical spending overview and click on the latest year for 'Chronic fatigue syndrome (ME/CFS)'. Here is the overview for 2019:
https://report.nih.gov/categorical_spending_project_listing.aspx?FY=2019&ARRA=N&DCat=Chronic Fatigue Syndrome (ME/CFS)

As noted by Jennifer Spotila, there is a problem that the NIH includes studies in this list that aren't really about ME/CFS.
For the year 2019 total funding is approximately 15 million but this includes a 2 million dollar study titled "Pathophysiology of Involuntary Movements and Volitional Disorders." This is a study of - what authors call - "functional (psychogenic) movement disorders". Only at the end of their abstract do the authors note:

"In collaboration with other groups, we are also studying the pathphysiology of mirror movements, ataxia in SCA7, and Chronic Fatigue Syndrome."​

So probably only a small portion of that grant money goes to actual ME/CFS research. In 2018 the NIH did something similar by including a study on catecholaminergic neurodegeneration where ME/CFS was only one of the many conditions studied. Probably only a portion of the grant money went to ME/CFS research, while the NIH listed it all under ME/CFS research. There is also an intramural study on fatigue that the NIH lists as ME/CFS research.

I suspect the total funding that goes to ME/CFS research will be more around 13 million than 15 million for 2019.

 

I've tried to make a preliminary overview of NIH grant funding for ME/CFS research in the year 2020. The short overview looks something like this (funding for intramural NIH studies is not included). A longer overview, with a short explanation of each study, is provided in the attached pdf document.



Only the first three are new projects that were submitted in 2020. So it's basically Jason's application to follow-up on his cohort of adolescents who experienced mononucleosis and Shungu's study of N-acetylcysteine as a treatment for ME/CFS. The third one was only 35.000 dollars to help organize the recent IACFS/ME conference.

All the other grants have been submitted earlier, often many years ago. The study by Marshall Vance Williams for example started in 2010, the one by Nacul in 2013, the one by Unutmaz in 2016. 6/11 of the researcher initiated research grants listed above (representing a third of the money) end in 2021 or sooner. The funding arrangement for the collaborative research centers runs until 2022 and will need to be renewed then. So I think there's a danger that funding will decrease in the future because long-running grants are not being renewed fast enough.

 

https://twitter.com/user/status/1304609922705842176

 

@Michiel Tack

It is possible that the "rocking-bed" study

https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=1R21NS108094-01A1

may lead to a study on it as a treatment for sleep disturbance in me/cfs or me/cfs with fm, depending on the results of the first study.

Of course, it's a bit of a stretch, but I'm trying to be optimistic.

Almost all studies report the possibility for biomarker study, however, I'm not particularly optimistic for any of them treading new ground. Maybe someone could explain what the Nacul study will add that hasn't been explored already. The lipidomics study looks interesting (Abdullah, works with Klimas on occasion), while the Howard univeristy fmri study I couldn't quite figure out if BPS would take it and run with it. The Younger study is interesting as well, although it looks like it will take a looong time before we see results from it.

 

@Michiel Tack Nath's project now appears. The 2020 number is $2,666,736
https://projectreporter.nih.gov/project_info_history.cfm?aid=10265885&icde=31258613

 

Huh, that's like a $2M increase in one year. Guess they were really busy last year? Which is strange because you think they wouldn't have seen a lot of patients.

 

Also per a @wigglethemouse tweet, they funded a Stanford James Lab' Study in early January on brain and whole body inflammation around $100k. (I don't know if this in addition the neuroimaging study James Lab tweeted about last summer, which sounded completed but hasn't been published).

 

The thread and details of grant are in here
https://www.s4me.info/threads/stanford-neuroinflammation-study.6052/#post-315660

The grant is for "Imaging Inflammation In The Whole Body And Brain Of Me/Cfs Patients" and not just the brain.

 

I assume the increased spending reflects the processing of stored samples. They wanted to process them together to minimize variations in batches. Brian Vastag has said that publications are in process.

https://twitter.com/user/status/1349827597346095104

 

1) Had a quick look at new NIH grants for ME/CFS research in 2021. Seems like there are three new projects:



One study at Stanford University is doing PET imaging using radiotracer [11C]DPA-713 for translocator protein 18 kDa (TSPO) which is an established imaging biomarker of inflammation.
https://reporter.nih.gov/search/yRt6xcKZp0uEl3CiqgghbA/project-details/10107645

Another study hopes to dig deeper on T-cell responses in ME/CFS. These researchers from the University of Massachusetts want to study CD8 T cell exhaustion and antigen driven clonal expansion of T-cells in patients with ME/CFS.
https://reporter.nih.gov/search/yRt6xcKZp0uEl3CiqgghbA/project-details/10185392

A fourth study led by Benjamin Natelson at Mount Sinai will conduct the 2-day exercise testing protocol on 80 ME/CFS patients. They hypothesize that ME/CFS patients have reduced total blood volume leading to a reduced stroke volume.
https://reporter.nih.gov/search/yRt6xcKZp0uEl3CiqgghbA/project-details/10211169

 

Merged thread

Xuanhong Cheng joins a global team funded by NIH to study cellular changes in muscle tissue, aiming to develop diagnostic tools for CFS and long COVID

https://www.eurekalert.org/news-releases/1065515

News Release 20-Nov-2024
Can electrical signatures help diagnose Chronic Fatigue Syndrome?

Lehigh University researcher Xuanhong Cheng joins a global team funded by NIH to study cellular changes in muscle tissue, aiming to develop diagnostic tools for CFS and long COVID

Grant and Award Announcement https://reporter.nih.gov/search/1u1EMRDAXEi6MB5HeUbWbA/project-details/10951972
Lehigh University

Spoiler: Large image of Xuanhong Cheng

image:

Xuanhong Cheng is a professor of bioengineering and materials science and engineering in Lehigh University's P.C. Rossin College of Engineering and Applied Science.

view more


Credit: Courtesy of Lehigh University

Chronic fatigue syndrome (CFS) is a complex and long-term illness characterized by extreme fatigue that doesn’t improve with rest, and can worsen with physical activity. The exhaustion is severe enough to limit a person’s ability to carry out daily activities like cooking, showering, or even getting dressed. Additional symptoms can include muscle pain, joint pain, memory issues, headaches, sleep problems, and sensitivity to light or sound.

There is no known cause or cure for CFS, which affects an estimated 3.3 million people in the United States, according to the Centers for Disease Control and Prevention.

There’s also no specific diagnostic test.

“It’s a mysterious disease,” says Lehigh University researcher Xuanhong Cheng, a professor of bioengineering and materials science and engineering in the P.C. Rossin College of Engineering and Applied Science. “There are no single biological indicators that can be used to diagnose chronic fatigue syndrome, and so doctors are forced to diagnose individuals by ruling out other symptoms and conditions.”

Cheng is part of an international team of researchers who recently received funding from the National Institutes of Health to explore molecular- and cellular-level changes in muscle tissue that could potentially lead to better diagnostic tools and therapeutic options for both CFS and related conditions, such as long COVID.

“The symptoms of CFS are very similar to that of long COVID,” says Cheng. “But one of the most consistent symptoms across both diseases is muscle pain. Our collaborator [Tiziana Pietrangelo of Università degli Studi "G. d'Annunzio" Chieti – Pescara, in Italy] has studied CFS for more than a decade, and she’s found that people with the disease also have elevated oxidative stress in their muscle tissue, which contributes to why the muscle is so easily overworked.”

The team is taking a multidisciplinary approach to determine if there are biological indicators within the muscle that could potentially be used to diagnose—and potentially treat—individuals with these conditions.

Pietrangelo will explore the physiology of the skeletal muscle tissue and muscle stem cells, and the role oxidative stress may play in their functions. Stefano Cagnin, a professor from University of Padova in Italy, will study gene expression in muscle fiber and muscle stem cells, comparing the results of healthy populations with those of people who have CFS, to uncover molecular changes linked to the disease.

Cheng will examine the electrical signature of skeletal muscle stem cells. Using a technology she co-developed called broadband electrical sensing, she will examine characteristics at the cellular level that could reveal if a cell is healthy or diseased.

“We’ll try to see whether those signatures are specific enough for us to diagnose the disease,” she says.

Electrical measurements could become a valuable diagnostic tool because they are easier and less expensive than molecular analysis. However, the researchers must first establish how these electrical changes correlate with underlying molecular abnormalities, which will be revealed through the work of the other team members.

It’s a novel approach in several respects.

“When it comes to CFS, researchers have focused on a range of different tissues, organs, and mechanisms, but we’re one of the first teams to look specifically at changes in skeletal muscle stem cells,” says Cheng. “And we’re using a multidisciplinary approach so we can look at those changes from the molecular level, the subcellular organelle level, and the cellular level.”

By integrating their data, the team hopes to develop a more comprehensive understanding of how CFS affects muscles and determine whether such changes could be used as diagnostic markers or therapeutic targets.

The long-term goal, says Cheng, is to create noninvasive diagnostic tools.

“For example, using an electrode at a certain frequency could allow you to see some kind of abnormal output indicating pathology in their muscle,” she says. “This could be used as an indicator for diagnosing CFS.”

Additionally, by pinpointing the molecular changes that contribute to the disease, the team hopes to eventually explore therapeutic strategies, which could, for instance, alleviate oxidative stress and improve patients’ symptoms.

While such advances are a long way off, any progress will be welcome news to the millions who suffer from a disease that has long been misunderstood—and often maligned.

“Because CFS has been so poorly understood, the people who have it were sometimes called lazy, or told their symptoms were all in their head,” says Cheng. “I think long COVID has, unfortunately, made people more aware that these symptoms are actually very real, and they can arise after a viral infection. We’re happy to see that change in thinking, and we’re looking forward to helping these people restore their health.”

About Xuanhong Cheng
Xuanhong Cheng is a professor of bioengineering and materials science and engineering in Lehigh University’s P.C. Rossin College of Engineering and Applied Science. Her research focuses on developing innovative micro- and nanoscale technologies for disease diagnosis and treatment, particularly in point-of-care diagnostics and biosensing. Cheng’s interdisciplinary work, leading the Lab of Micro- and Nanotechnology for Diagnostics and Biology, bridges engineering and biology, aiming to create tools that improve healthcare delivery in resource-limited settings. She has published extensively in leading scientific journals and collaborates with researchers across various fields to advance biomedical research.

Cheng earned her PhD in bioengineering from the University of Washington, where she specialized in biomaterials and nanotechnology. Her work encompasses areas such as the development of biosensors for pathogen detection, lab-on-a-chip systems, and microfluidic devices for rapid diagnostics. She is committed to translating cutting-edge technologies into real-world applications and has been recognized for her contributions to both the engineering and biomedical fields.

Related Links

• Rossin College Faculty Profile: Xuanhong Cheng
• NIH: "Transcriptional profiling of proliferative skeletal muscle mononucleated cells coupled with broadband electrical..."
• Lehigh University: The Cheng Group
• Institute for Functional Materials and Devices

 

i think this link needs fixing as it currently goes to a generic page.

The NIH grant is here: https://reporter.nih.gov/search/1u1EMRDAXEi6MB5HeUbWbA/project-details/10951972

 

I just copied and pasted it.
Anyway I have now added in the link where you thought it would be useful for it to be added.

 

Ah, I see. In that case it's not actually wrong, as it's an internal link for the website indicating what class of news release the article is. Just a bit confusing.

 

Treating oxidative stress has helped restore my muscle function.

My brain didn't benefit as much.

 

There are lots of related grants listed on the NIH link. Wonder if these have been discussed here...?