USA: News from Solve ME

Solve have announced their latest batch of Ramsay Grant researchers.

We're excited to share the newest class of Ramsay Researchers! Since its launch, our Ramsay Research Grant Program has been successful in attracting new scientists to the fields of ME/CFS and Long Covid. Ramsay researchers have gone on to earn $8 million in follow-on funding, much of it from the National Institutes of Health (NIH). That's a 8x return on our investment in preeminent scientists and researchers driving toward treatments.

This year, one study will explore an animal model of ME/CFS which, if successful, could expedite the discovery of ME/CFS disease mechanisms and treatments. Three others are clinical trials exploring new treatments in ME/CFS and Long Covid.

"The Ramsay Grants this year reflect an intentional focus on research that gets us closer to diagnostics and treatments for ME/CFS and Long Covid. I am thrilled that we are at a point where we can support trials that deploy therapeutic interventions and study if they can meaningfully reduce symptoms in people with ME/CFS," says Solve M.E. CEO Oved Amitay. "I am also encouraged to see how ME/CFS can benefit from progress in Long Covid, as well as the potential to develop animal models, which can help translate basic research into drug development. We look forward to learning more about the progress of these exciting studies in the coming months."

Deborah Duricka, PhD | Effect of Stellate Ganglion Block on ME/CFS Symptoms and Plasma Metabolites

After observing in a previous study that blocking stellate ganglion with regional anesthesia reduced symptoms of Long Covid, Deborah Duricka, PhD, and her team will apply these findings to investigate the effect of this same block on ME/CFS symptoms and physiology. Sympathetic signals routing through the stellate ganglion from the brainstem modulate cerebral blood flow, which is associated with the severity of brain fog and fatigue in ME/CFS and POTS.

If the block is successful in reducing symptoms (including tolerance to orthostatic challenge and cognitive deficits), this study could ultimately lead to a potentially effective treatment.


Avik Roy, PhD | Targeting Atg13 in an Animal Model for ME/CFS

Dr. Avik Roy and his team are developing an animal model to explore the molecular mechanism of ME/CFS. Dr. Roy will investigate how autophagy impairment contributes to the pathogenesis of ME/CFS. His group will study if the genetic ablation of early autophagy protein ATG13 gene might display post-exertional malaise (PEM) pathology in mice.

If the study is successful, it will help to establish the link between autophagy impairment and ME/CFS pathogenesis. The animal model could identify the molecular mechanism of ME/CFS, and also has potential as an important tool for drug discovery.


Katharine Seton, PhD | Immunosenescence and Premature Aging of the Immune System in ME/CFS and the Response to Fecal Microbe Transplantation

Premature immune aging could explain immune dysfunction in ME/CFS. Dr. Katharine Seton will use Ramsay funding to investigate the link between microbial dysbiosis and immune aging and NK cell senescence in ME/CFS. This clinical trial will assess the efficacy of fecal microbe transplantation (FMT) — the transfer of stool microbes from a person with healthy colon flora to another individual for therapeutic purposes — to determine whether FMT is able to restore immune function in ME/CFS patients and whether this affects symptoms.

This is important both for understanding the role of the immune system in ME/CFS, and to understand a mechanism by which FMT could improve quality of life for people with ME/CFS.


Rob Wüst, PhD | Micro-clots, Skeletal Muscle Pain and Post-Exertional Malaise in Patients with Long Covid: From Pathophysiology to Treatment

Dr. Rob Wüst and his team will study the mechanism underlying the development of post-exertional malaise (PEM), and the relationship with the development of microclots to provide a deeper molecular understanding of skeletal muscle adaptations. The primary aim of this study is to unravel the origins of muscle pain, extreme muscle fatigue and PEM in patients with Long Covid.

In its observations of PEM, the hallmark symptom of ME/CFS, this study may have direct implications to ME/CFS, including therapeutic options such as anticoagulants.


Dana Yelin, MD MPH | Enhanced External Counterpulsation (EECP), Non-invasive Approach to Treat Long Covid Fatigue

Dr. Dana Yelin and her team will study the effects of enhanced external counter-pulsation (EECP) on Long Covid patients suffering from fatigue and examinie functional status, vascular markers and quality of life improvement following treatment. EECP is a non-invasive outpatient therapy that has been shown to improve functional status and quality of life in some groups of patients with impaired blood flow and other vascular problems.

This study builds on the use of EECP for cardiac conditions that require improved blood flow to the upper body. A similar mechanism has been documented in some people with ME/CFS. This study in Long Covid could provide additional proof of concept for ME/CFS as well.

 

Study Summary

Skeletal muscle-related symptoms, such as fatigue and post-exertional malaise (PEM), are hallmark symptoms of patients with long-covid and ME/CFS. PEM limits daily life activities in patients, where extreme muscle fatigue and other symptoms worsen after an acute bout of exercise. In this translational project, we will provide a better fundamental understanding of the biological aspects of skeletal muscle adaptations during PEM. The primary aim is to unravel the origins of muscle pain, extreme muscle fatigue and post-exertional malaise in patients with long-covid. For this, we perform molecular analyses on skeletal muscle biopsies and blood obtained before and after the induction of PEM.

I think they're going to discover that micro-clots does not coincide with PEM.

 

Seems like the Avik Roy one is the only good one here. FMT won’t work and I don’t think the EECP will either. Disappointing.

How will you do a sham (control) treatment for this thing?

https://www.youtube.com/watch?v=PVq1NNm7qkI

 

The FMT study is potentially interesting but they insist on weird outcome measures. I think an FMT would be easy to blind so why not just use symptoms scores or something?

The SGB is also hard to blind because it causes certain side effects.

Wust's research on microclots probably won't find anything. But it might be interesting if it does.

I agree that the animal model is probably the most exciting thing here. Though we should all be aware that the Ramsay Grant program is all about early-stage research.

 

From a recent Solve M.E. email announcing their Solve Spotlight webinar series:

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In our Solve Spotlight webinar series, we connect with members of our community to share their experiences with ME/CFS, Long Covid, and other post-infection diseases. In the coming months, we’ll focus on authors whose empowering narratives illuminate the complexity of living with complex chronic illness and chronicle the fight for patient-driven change.

Ryan Prior On The Long Haul and
How Patients Can Change the World

In his new book, The Long Haul: Solving the Puzzle of the Pandemic's Long Haulers and How They Are Changing Healthcare Forever, CNN journalist and ME/CFS patient advocate Ryan Prior writes about how chronically ill communities predicted the Long Covid crisis, and how patient voices should shape the medical system of the future.

In this webinar hosted by Solve M.E. VP of Advocacy and Engagement Emily Taylor, Prior talks about The Long Haul and how getting Long Covid treatments right could help revolutionize care for all complex, chronic illnesses.

Join us Monday, November 14 at 10 AM PT.

Register today for the chance to win a free signed copy of The Long Haul!

Register for November 14 Webinar Here


Fiona Lowenstein, Dona Kim Murphey and
The Long Covid Survival Guide

For people living with Long Covid, navigating the uncharted territory of this new chronic illness can be challenging. With over two hundred unique symptoms, and with doctors continuing to work toward a cure, people experiencing Long Covid are often left with more questions than answers. The Long Covid Survival Guide is the first patient-to-patient guide for people living with Long Covid—with expert advice on getting diagnosed, dealing with symptoms, accessing resources and accommodations, and more.

Editor Fiona Lowenstein (award-winning journalist, producer, speaker, and the founder of Body Politic) will join us on Tuesday, November 22 at 10 AM PT to talk about the book. They’ll be joined by contributor Dona Kim Murphey, a board certified clinical neurophysiologist who co-authored with Dr. David Putrino a Survival Guide chapter on diagnosis.

Whether you’re a caregiver or a person with Long Covid, ME/CFS, or another associated condition, this webinar will include relevant information about how to take care of yourself and what comes next. Register today for the chance to win a free signed copy of The Long Covid Survival Guide!

Register for November 22 Webinar Here


Meghan O’Rourke On Her NYT Bestseller
The Invisible Kingdom: Reimagining Chronic Illness

Meghan O’Rourke will join us on Monday, January 23, 2023 at 12 PM PT to discuss her New York Times bestseller The Invisible Kingdom: Reimagining Chronic Illness, which is a finalist for the National Book Award in nonfiction.

Meghan is recipient of numerous literary awards, including a Guggenheim Fellowship, a Radcliffe Fellowship, a Lannan Literary Fellowship, and the Union League Prize for Poetry from the Poetry Foundation. She is also editor of The Yale Review. Her writing has appeared in The Atlantic Monthly, The New Yorker, and The New York Times. Register today for the chance to win a free signed copy of The Invisible Kingdom!

Register for January 23, 2023, Webinar Here


Support Our Educational Webinars Today
Solve M.E. is proud to host free, online webinars that uplift the voices of community members who are dedicated to raising awareness of the devastating impact of chronic diseases. You can help support these efforts by giving today.

Donate Today

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There is now also
Solve Long-Covid

Long Covid Patient Advocate and ME/CFS Expert Share Insights during WCHM TV Interview Segment

https://www.youtube.com/watch?v=ofGfznpNjzc

 

Wow, they nailed it!

 

Solve M.E. Awarded Grant From Chan Zuckerberg Initiative to Support Patient Engagement in Long Covid Research

"Today, Solve M.E. announced it is the recipient of significant grant funding from the Chan Zuckerberg Initiative (CZI). With the $247,500 in funding, Solve M.E. will develop a groundbreaking program that will train a network of patient leaders, scientists and other stakeholders with diverse backgrounds to enhance patient engagement in Long Covid research. These trained patient representatives will ultimately create a targeted research agenda, a network of empowered patientadvocates and a guide to working with Long Covid patients for researchers. These critical tools will provide urgently needed guidance on achieving patient-centered research in the Long Covid field, as well as help to empower communities in other related fields."

Press release PDF, https://solvecfs.org/wp-content/uploads/2022/12/CZI-Press-Release_FINAL-PDF.pdf

 

"The Fall 2022 Edition of The Chronicle is Available Online Now!",

Featured articles include:

• New Ramsay Grant Researchers Push the Envelope with Innovative ME/CFS & Long Covid Studies
• Milestone: First You + ME Registry Peer-Reviewed Paper Published
• Solve’s Summer Advocacy Roadshow
• Community Support Resource Guide
• Solve M.E. Spearheads the First Nationwide Long Covid PSA Campaign
• Ryan Prior On The Long Haul and How Patients Can Change the World
• Solve Experts Educate Millions About ME/CFS and Long Covid in National Media Tour
• The Transformative Power of Monthly Giving
• Donor Spotlight: Fara Leonard
• An Evolving Landscape: Long Covid’s Impact on ME/CFS

https://solvecfs.org/wp-content/uploads/2022/12/Chron_F22_hiquality.pdf

 

From page 1:

 

Blog post by Emily Taylor of Solve M.E.:

Key Takeaways from the New Federal Budget

https://solvecfs.org/key-takeaways-from-the-new-federal-budget/

Highlights:

 

Webinar hosted by Solve M.E. and BIO:

“Long Covid: What Will It Take To Accelerate Therapeutic Progress?”
February 21 @ 10:00 am - 1:00 pm Pacific / 1:00 pm - 4:00 pm Eastern

Full announcement here, includes list of speakers:

https://solvecfs.org/event/solve-m-...l-it-take-to-accelerate-therapeutic-progress/

Register here:

https://bio-org.zoom.us/webinar/register/7416748364515/WN_j0hhpdzFQpujJRcVanmnMg

 

Merged thread

New blog post from "Calling all ME/CFS Allies!" - Solve ME Advocacy Week: Sign Up Today!

I discovered this substack blog recently (substack = yet another publishing platform):

Calling all ME/CFS Allies! By Encephalogirl​

Home page: https://encephalogirl.substack.com/

The most recent post interviews Emily Taylor from Solve M.E. about their upcoming Advocacy Week:

https://encephalogirl.substack.com/p/solve-me-advocacy-week-sign-up-today

 

CDC Responds to Solve M.E. Comments on Draft Review of Diagnosis and Treatment of ME/CFS

https://solvecfs.org/cdc-responds-t...-review-of-diagnosis-and-treatment-of-me-cfs/

 

Will this "literature review" expand on, or duplicate the IOM report? Because nothing significant has changed since, other than confirming the report's conclusion.

That report took years to produce, and it was largely ignored anyway. Long Covid obviously changed everything, but they're still not even where we were on day one, no one has the courage to come out and end this stalemate, admit that they ruined millions of lives through sheer negligence and ideological fanaticism.

So nice, though, that they committed to a useless process, even though they were told the way they were doing it was useless, and now they're, uh, I don't even know what they're even doing anymore. Just dysfunction and indifference. They produce a report that doesn't have enough evidence to overturn something that doesn't have evidence. The art of not giving a damn.

All this process did was waste 4 years for nothing. Because they did it all wrong. After decades of negligence, it's just more of the same old. Zero sense of urgency. What a total disaster.

 

A reminder for US folks who want to participate in Solve ME's Advocacy Week = April 17 - 21, 2023.

The registration deadline for in-person and Zoom meetings is Sunday, March 26.

Here's a schedule summary:



Registration link for In-person Senate Meetings: https://lobbydayregistration.wufoo.com/forms/z1q7hmh21lr1kwk/

Registration link for Virtual Meetings with U.S. House Members: https://lobbydayregistration.wufoo.com/forms/z1adjibw0c3ltzm/

Full details and an FAQ can be found here: https://solvecfs.org/advocacy/advocacyweek2023/