Solve ME/CFS Initiative: Ramsay Grant program 2019 awards

Andy

Andy

Senior Member (Voting rights)
2019 is our biggest year yet! We have over 30 researchers working across seven projects. The group represents 12 academic centers and organizations. Three of the studies will be done collaboratively, integrating scientists from different labs.

“Altered T cells in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)“

Liisa Selin (PhD) and Anna Gil (PhD)
University of Massachusetts Medical School


“Possible class II MHC deficiency in patients with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS)”

Bruno Paiva (PhD)
University of Navarra, Spain
Collaborators: Manuel Ruiz Pablos, Rosario Montero Mateo (MD), Aintzane Zabaleta Azpiroz (PhD), Diego Alignani (PhD), Idoya Rodriguez Serrano, Sonia Garate Luzuriaga


“Defining the postural contributors to post-exertional malaise (PEM) in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)”

Shad Roundy (PhD)
University of Utah
Collaborators: Cindy Bateman (MD), Turner Palombo, Andrea Campos


“Extensive characterization of the ME/CFS blood and CSF microbiome + virome ”

Nikos Kyripides (PhD), David Paez-Espino (PhD), Kris Fobes
Berkeley University DOE Joint Genome Institute; GeneSavvy
Collaborators: Amy Proal (PhD), Jonas Bergquist (MD, PhD), Robert Moir (PhD)


“Unraveling endothelial function in ME/CFS”

Francisco Westermeier (PhD)
FH JOANNEUM University of Applied Sciences, Austria
Collaborators: Nandu Gowami (MD, PhD), Nuno Sepulveda (PhD), Monika Riederer (PhD), Bernhard Wagner (PhD), Jennifer Blauensteiner (PhD)


“PARsing post-exertional malaise: does post-exertional autonomic recovery (PAR) impact post-exertional malaise?”

Kegan Moneghetti (PhD)
Stanford University
Collaborators: Lily Chu (MD), Jeffrey Christie (PhD), Donn Gavert (MS), Tullia Lieb


“Brain perfusion changes in chronic fatigue syndrome before and after exercise challenge”

Michael Van Elzakker (PhD) and Kenneth Kwong (PhD)
Massachusetts General Hospital, Harvard Medical School
Collaborator: Suk-tak (Phoebe) Chan (PhD)

Visit https://solvecfs.org/smci-ramsay-grant-program/ to learn about each individual project.

Also, watch out for a video I recorded with Allison Ramiller and Dr Sadie Whittaker from Solve where we briefly discuss each of these projects. I'm still editing it at the moment but hope to be able to release it soon.

ETA: The video mentioned above is now available here, https://www.s4me.info/threads/video...their-ramsay-grant-program.12004/#post-212816
 
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Way to go SMCI!

This is what can be done, as opposed to government research granting agencies who say they don't receive enough applications for ME; or enough quality applications.

The Solve ME/CFS Initiative does.

Of course quality applications are out there!

Lame excuse by government agencies.

Hope they move off this mantra.
 
“Possible class II MHC deficiency in patients with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS)”

Bruno Paiva (PhD)
University of Navarra, Spain
Collaborators: Manuel Ruiz Pablos, Rosario Montero Mateo (MD), Aintzane Zabaleta Azpiroz (PhD), Diego Alignani (PhD), Idoya Rodriguez Serrano, Sonia Garate Luzuriaga


Middleton D, Savage DA, Smith DG. No association of HLA class II antigens in
chronic fatigue syndrome. Dis Markers. 1991 Jan-Feb;9(1):47-9. PubMed PMID:
1683826.
 
DokaGirl said:
This is what can be done, as opposed to government research granting agencies who say they don't receive enough applications for ME; or enough quality applications.
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There is a difference between the Ramsey Grants and the NIH grants, though. Ramsey Grants are preliminary studies. When they obtain promising data, they can go to NIH for a larger grant. I actually believe NIH when they say that they are receiving grant proposals. All of the information that advocates have obtained confirms that.

The Ramsey Grants and other pilot studies should lead to larger grants - Dr Younger is a great example. But right now there are things that NIH could be doing to jump start the field. The #NotEnough4ME letter to Dr Koroshetz lays many of them out.
 
Do researchers new to the field get some sort of coaching from Solve ME/CFS?

One or two of the abstracts seem to indicate a somewhat patchy understanding of ME. That's not to say the projects are of no value or that new researchers aren't welcome - quite the opposite - only that ME is complex and it naturally takes a while to fully get your head around it.

From Liisa Selin and Anna Gil's project “Altered T cells in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)”
“We are therefore very excited by our recent findings of a unique subset of T cells that may play a role in ME/CFS immunopathogenesis and its potential to be a biomarker.
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In this pilot study, we propose to examine the role of a novel subset of immune cells, CD4+CD8+ T cells in the pathology of ME/CFS.

We recently discovered not only an increased frequency of this otherwise rare T cell in a group of ME/CFS patients we were studying, but also that they were highly activated producing unusual cytokines. We observed a difference in the activation profile of these cells in mild and severe cases of ME/CFS. In my long career of studying human T cell responses during viral infections I have never previously observed an increase in this cell type. We will examine the role they may play in the highly dysregulated immune response of ME/CFS patients. [...]

Based on our preliminary data, we will examine in a larger cohort, whether this unique subset of CD4+CD8+ T cells is increased in all ME/CFS donors, or does it only occur in a subgroup. [...]

In our preliminary studies examining the TCR repertoire of the CD4+CD8+ population there was strong evidence they were expanded by recognizing an antigen. At this time, we do not know if this is a self or a pathogen antigen. We will therefore explore the TCR repertoire of this unique population of CD4+CD8+ T cells in order to find characteristics that will help us identify the potential antigen that is driving their expansion and activation.
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Has anything been presented about these early findings? They sound intriguing, in a preliminary sort of way.
 
Ravn said:
Do researchers new to the field get some sort of coaching from Solve ME/CFS?
Click to expand...
This gets covered in the video that should be released in the next day or so. In order to assist researchers applying to the Ramsay Program, particular those new to the field, they have put together this document which they call a Researcher Toolkit, which includes an overview of what ME is for patients, https://solvecfs.org/wp-content/uploads/2019/04/Toolkit-2019-Final.pdf

Additionally, all applications go through a peer review process which should pick up any applications that really don't have a proper understanding of ME.

Ravn said:
Has anything been presented about these early findings? They sound intriguing, in a preliminary sort of way.
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The only thing published that talks about CFS is this review paper here from 2011, https://www.s4me.info/threads/heter...ring-viral-infections-2011-selin-et-al.11905/

I haven't asked the question but my guess is that perhaps they have been doing unfunded preliminary work which has given them this data.
 
Andy said:
“PARsing post-exertional malaise: does post-exertional autonomic recovery (PAR) impact post-exertional malaise?”

Kegan Moneghetti (PhD)
Stanford University
Collaborators: Lily Chu (MD), Jeffrey Christie (PhD), Donn Gavert (MS), Tullia Lieb
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From: https://solvecfs.org/kegan-moneghetti/
Consequently, we believe that an abnormal ANS which fails to help the body recover appropriately from a challenge may initiate a physiological cascade that ultimately leads to PEM. To test our theory, we will first compare how quickly the heart rate of 20 people with ME/CFS and 20 healthy sedentary participants recover to baseline after a maximal cardiopulmonary exercise test. In parallel we will record heart rate variability and assess participants’ level of fatigue, pain, problems thinking, difficulty sleeping, and overall function via a questionnaire pre-exercise and at five different time points post-exercise. We will examine and compare the relationship between heart-related measures and symptom reports in both groups. Finally, all study participants will complete a series of mental tasks pre-exercise and at two timepoints post-exercise. This will allow us to examine the relationship between the ANS in recovery and post-exercise mental abilities.

To our knowledge, no prior study has investigated ANS during recovery and PEM together after a standardized, physical exercise challenge. Another innovative feature of this project is the use of online platforms to remotely gather post-exertional subjective and objective information. The proposed research is significant because it may inform the cause of PEM. These data may prove useful in preventing and treating PEM in people with ME/CFS. Since PEM is a key feature of ME/CFS, understanding the mechanism behind it could also lead to more effective ME/CFS treatments.
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Unfortunatey, Kegan seems to be unaware that Max Nelson et al. did investigate just that, namely heart rate recovery after 2 day CPET. (and found no meaningful difference)

There may be ANS differences, but I strongly suspect they are an additional symptom, a consequence (and possibly even positive adaptation) not a cause of the symptoms.
 
Wilhelmina Jenkins said:
The Ramsey Grants and other pilot studies should lead to larger grants - Dr Younger is a great example. But right now there are things that NIH could be doing to jump start the field. The #NotEnough4ME letter to Dr Koroshetz lays many of them out.
Click to expand...

I think often government research funding is built on a model where they will improve the state of the art based on a reasonable body of knowledge. Its unfortunate that there isn't this knowledge for ME and that government funding agencies don't have the sense to realize this and look for ways to bootstrap research and get new research going through smaller pilot grants.

Some things like the GWAS study that is currently being proposed simply don't work with pilot studies as vast numbers of samples are needed to make any statistical sense. Here it is important that large funding agencies have the sense to realize that hypothesis forming studies are very valuable.
 
Very happy and grateful for these grants, there are some seriously good researchers here, particularly interested in Michael Van Elzakker and Amy Proal's work as well as the endothelial function investigation. Great to see researchers from many different parts of the globe.


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