ahimsa
Senior Member (Voting Rights)
A "year in review" article for advocacy done by Solve ME:
2025 Advocacy in Review: What You Helped Push Forward
2025 Advocacy in Review: What You Helped Push Forward
Interview with neuroimaging researcher Zack Shan
Solve ME said:In this interview, Dr. Shan shares:
- What his team is learning from brain scans and autonomic testing
- Why biological subtypes may hold the key to future diagnosis and treatment
- How real-world patterns in patients are shaping the next generation of ME/CFS research
- What it means to truly listen to the patient voice in science
Solve ME said:In this conversation, Roshan shares:
- Why dysfunctional T cells are a promising focus of research
- What it means to see meaningful immune signals in small cohorts
- How his personal experience as a caregiver shapes his work
- What gives him hope in the face of scientific and systemic barriers
- What he’d do with more funding—and how close we are to drug discovery
Solve ME said:Caring for someone with ME/CFS is an act of deep love–and preparation is one of the most meaningful ways to protect their future.
Hosted by Solve M.E. Director of Advocacy Monique Wike, Andrew Kantor, Esq. (Senior Partner at Kantor & Kantor, LLP), will walk caregivers through essential legal and insurance strategies to support a loved one living with ME/CFS.
Andrew will break down long-term disability (LTD) insurance, long-term care (LTC) planning, medical and legal documentation tips, and practical steps families can take to secure benefits and long-term stability.
Whether you’re just beginning this journey or planning ahead, you’ll gain the knowledge and confidence to advocate effectively, protect your loved one’s financial security, and support their care with clarity and strength.
Register Today for “From Mystery to Measurable: The Science Behind the New ME/CFS Blood Test”
Date: Tuesday, January 15, 2026
Time: 9-10 am PT / 12-1 pm ET
Solve ME said:Why do so many people with ME/CFS share the same immune gene variants?
That’s the question driving Manuel Ruiz-Pablos’s research.
Solve ME said:In this interview with Solve Director of Advocacy Monique Wike, Ruiz-Pablos shares:
- How a personal health crisis launched his research
- Why he focuses on HLA-II genetics and herpesviruses
- What gives him hope as both a patient and a scientist
- What he’d say to policymakers, and to other patients
Solve ME said:... three of our core asks from Advocacy Week last year made it into the final version:
1) Centers for Disease Control and Prevention (CDC) ME/CFS program funding is protected
The CDC Chronic Fatigue Syndrome program is funded at $5.4 million. This is one of the only dedicated federal public health footholds for ME/CFS. Keeping it in place was not easy this year with so many programs facing cuts, so this is a meaningful “we held the line” moment for our community.
2) ME/CFS remains eligible for a key Department of Defense Medical Research program
ME/CFS will remain an eligible topic area under the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) at the Congressionally Directed Medical Research Program (CDMRP). The PRMRP program itself will receive $370 million this year. That eligibility matters because it keeps an important research funding pathway open to our scientists.
3) National Institutes of Health (NIH) now has a real deadline to act on the ME/CFS Research Roadmap
Congress directed NIH to develop an implementation plan for the ME/CFS Research Roadmap within 180 days of the bill being signed. This doesn’t automatically guarantee funding but it does create a clear moment of accountability and ensure ME/CFS is a priority at NIH. NIH now has to put in writing how it plans to move forward on the roadmap’s priorities like biomarkers, treatments, and clinical trials.
A huge thank you to #NotJustFatigue and #MEAction, who have been spearheading the Roadmap push.
Discovery of Target Antigens for Dysfunctional T Cells in ME/CFS and Long COVID
Dr. Liisa Selin, Dr. Roshan Kumar, and Dr. Ayano Kohlgruber will identify the specific proteins that trigger dysfunctional immune responses in ME/CFS and Long Covid. Their work could reveal new biomarkers and treatment targets and will create valuable resources for future research.
Seems like they have already concluded on what kind of disease ME/CFS is..Dr. Selin told us, “This award is crucial to our continuing our research into the immunopathogensis of ME/CFS and making a giant step to identify the potential viruses or autoantigens that drive the disease.”
Just saw this anecdotal today:
- Effect of Semaglutide on ME/CFS Symptoms
Led by Professor Carmen Scheibenbogen, this study will evaluate whether semaglutide, a GLP-1 receptor agonist, can reduce symptoms and improve quality of life for people with ME/CFS who are receiving treatment for being overweight. The research will also try to identify biomarkers to predict which patients may benefit most and ensure patient involvement throughout the project.
From their comment history they were moderate 6 months ago, but did weightlifting 3-4 times a week (presumably at home), not to failure, and preferred heavy weights and fewer reps. I have no idea how much physical activity that is, but it’s an unusual case.Just saw this anecdotal today: