Sunday Conversations March 2026

Aimee Nefcy, MD is an emergency medicine and medical toxicology physician who suffers from ME/CFS. She became ill during the pandemic, starting with fatigue and brain fog, and excessive sleeping without feeling rested. Eventually she developed orthostatic intolerance and post exertional malaise, and came to the conclusion that she met the diagnostic criteria for ME. Now she runs a support group for other physicians with ME, Long COVID, and other infection-associated chronic conditions.

In this talk, Aimee will discuss how being a physician has shaped her experience as a person with ME, led to her creating a support group for other physicians, and share her thoughts on how medical education can be reformed.

Sunday Conversations is a free program and all are welcome!

This program will be recorded for later viewing.

We are excited to announce that our New England Meet Up is now a Northeast Meet Up!

Our young adult group now includes the entire Northeast region.

MA, ME, NH, VT, RI, CT, NY, NJ, and PA!

Stay tuned for details!

Long COVID Awareness Month is a time for everyone impacted by Long COVID to come together globally in coordinated awareness and action.

This effort will highlight the urgent need for prevention, research, funding, and long-term care for people suffering with Long COVID. Hundreds of millions worldwide continue to be infected with SARS-CoV-2, and many are still developing Long COVID. The World Health Organization estimates 10–20% of those infected experience prolonged symptoms.

COVID-19 Longhauler Advocacy Project (C19LAP) has created a calendar of events to particpate, with many activities you can do from home.

In Case You Missed It

The federal funding bill passed in February extended the Medicare teleheath program until December 31, 2027. This ensures that COVID-era telehealth flexibilities will continue — at least for now — providing continuity of care for those who have come to depend on virtual appointments. You can find all the details here.

Also in February, Congress directed the NIH to develop an implementation plan for the ME/CFS Research Roadmap within 180 days. The comprehensive Roadmap was developed by a working group of patients, advocates, researchers, and clinicians, who delivered their report in 2024. Congress's direction does not guarantee funding for the Roadmap, but it does require the NIH to clearly outline how the plan will be implemented. Kudos to #MEAction and #NotJustFatigue for their advocacy work on this.

Long COVID and ME/CFS on the Front Page of the Boston Globe

The Boston Globe ran an excellent front-page story by Felice Freyer about Samantha Crausman of Rehoboth MA, who has severe Long COVID and ME/CFS. The article quotes Lucinda Bateman of the Bateman Horne Center and Amy Proal of PolyBio Research. We're sure any reader of this newsletter will identify with this quote from Samantha's physician father, Dr. Rob Crausman: "If I have one more person tell me that she just needs to do yoga, I will lose my mind." 

Please Note: The article is behind a paywall for Boston Globe digital subscribers only, but we felt it was important to include for ME/CFS awarenerss.

Stellate Ganglion Block

The Stellate Ganglion Block (SGB) technique is an anesthetic injection that targets a collection of nerves at the bottom of the neck, affecting autonomic functions. This technique has long been used for pain and nervous system disorders, and is now the subject of one of the four Long COVID clinical trials in the NIH's RECOVER-TLC program. The NIH has just announced the design of that trial, and is seeking input. The window for feedback closes on March 8.

Some people with Long COVID and ME have found SGB to be helpful while others have found no effect or a worsening of symptoms. Dr Zeest Khan, an anesthesiologist and Long COVID patient/advocate, has posted a very helpful video that covers the procedure, how it works, what symptoms may be improved, the side effects and risks, and her own personal experience with SGB. She also recorded a podcast about SGB. Both can be found on Dr. Khan's website.

Sequence ME & Long Covid launches new study

Action for M.E., the Schmidt Initiative for Long COVID, and the Complex Disorders Alliance (CODA) announce the launch of Sequence ME & Long Covid – the world’s largest long-read, whole-genome study of any disease.

Building directly on the success of the DecodeME study, this project aims to unlock deeper genetic insights that could accelerate the development of diagnostics and future life-changing treatments.

Catalyst Grants Announced

SolveM.E. announced their latest round of Catalyst Awards supporting significant research that advances our understanding of ME/CFS, Long COVID, and associated conditions.

One grant will go to Prof. Carmen Schiebenbogen (Institute of Medical Immunology, Charité) for work evaluating the potential for semaglutide, a GLP-1 receptor agonist, to reduce symptoms. The other grant will go to Massachusetts researchers Dr. Liisa Selin (University of Massachusetts Chan Medical School), Dr. Roshan Kumar, (HiFiBiO Therapeutics), and Dr. Ayano Kohlgruber (Boston Children's Hospital). Their research aims to identify proteins that trigger dysfunctional immune responses in ME/CFS and Long COVID.

CONTACT US

Massachusetts ME/CFS & FM Association is a 501c3 non-profit registered in the state of Massachusetts. 

Massachusetts ME/CFS & FM Association

PO Box 390459

Cambridge, MA 02139-0459 

617-471-5559  contact@MassMECFS.org

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