Massachusetts ME/CFS & FM Association

Sunday Conversations - Recording available now! youtube.com/watch?v=iDGDWf… #massmecfs #chronicfatigue #fibromyalgia #MECFS #chronicillness #longcovid

This Sunday! We are so happy to have Dr. Aimee Nefcy share her experience as a physician and a patient! Please join Sunday Conversations, 3/15 @ 4pm ET. massmecfs.org/events/sunday-… #massmecfs #MECFS #chronicfatiguesyndome #fibromyalgia #iacci #longcovid

March is Long COVID Awareness Month March 15th: Long COVID Awareness Day March 15th-21st: Long COVID Awareness Week Check out the Long Hauler Advocacy Project 4 details longhauler-advocacy.org/lcamonth2026 #massmecfs #longcovid #longcovidawareness #chronicfatigue #chronicillness #MECFS #iacci

Click here for the latest news and more! massmecfs.org/resources/news… #massmecfs #chronicfatigue #MyalgicEncephalomyelitis #longcovid #fibromyalgia #MECFS

📢 New webinar! Dr. Liisa Selin, Dr. Ayano Kohlgruber, & Dr. Roshan Kumar will discuss "The Discovery of Target Antigens for Dysfunctional T Cells in #MECFS and #LongCOVID." WHEN: Tuesday, April 28 @ 3:00 pm PT / 6:00 pm ET. Register here: ow.ly/tiNH50YmLTT

Grateful for this support from @PlzSolveCFS. This Catalyst Award will help us identify pathogens & autoantigens driving ME/CFS and translate these findings into biomarkers and treatments for patients. -Liisa Selin MD, PhD, Anna Gil PhD, Roshan Kumar PhD, Ayano Kohlgruber PhD

We are excited to hear from Dr. Aimee Nefcy as she shares her story of being a physician & a patient! Please join us for our next Sunday Conversations, 3/15 @ 4pm ET massmecfs.org/events/sunday-… #massmecfs #MECFS #MyalgicEncephalomyelitis #chronicfatigue #longcovid #fibromyalgia

TY for your reply! We published findings from phase 1 of our low dose rapamycin trial in the Journal of Translational Medicine here: link.springer.com/article/10.118…

Good News! Recent legislation authorized an extension of many of the Medicare telehealth flexibilities through December 31, 2027. Details here: telehealth.hhs.gov/providers/tele… #massmecfs #medicare #telehealth #medicaretelehealth #chronicillnessawareness

Catch up on the latest, the Feb newsletter is out: massmecfs.org/resources/news… Better yet, subscribe! massmecfs.org/resources/news… #massmecfs #MyalgicEncephalomyelitis #MECFS #fibromyalgia #chronicillness #iacci #longcovid #chronicfatigue

Looking fine ≠ feeling fine For many people with ME/CFS and Long COVID, exertion can trigger Post-Exertional Malaise (PEM), a delayed, biological crash after even small activities. When effort makes you worse, “pushing through” isn’t motivation. It’s misinformation.

"We lack such treatment (for ME) not because #ME is some “weird” “mysterious” illness that can’t be understood Its because our political medical & scientific institutions have chosen to make ME the lowest-funded illness relative to disease burden by a mile massmecfs.org/members/member…

In pre-2020 ME cases, analysis of over 7000 proteins demonstrates that exertion disrupts T and B cell signaling, IL-17 pathways, and mitochondrial metabolism in comparison to healthy sedentary controls. Protein signatures correlate with symptom severity.

My latest: Long COVID clinics are quietly closing, leaving thousands of patients without specialized care. Read more via @Scienceline scienceline.org/2026/01/long-c… A huge thank you to all the people living with Long COVID who shared their stories, to the healthcare providers who offered their insights, and to the advocates dedicated to raising awareness, funding, and education for this disease.

Netherlands research body (ZonMw) has launched a c€3.5m call for research applications into clinical research into effectiveness of existing medicines (off-patent and available in the Netherlands) which may prove effective for ME/CFS. tinyurl.com/kzrxwbwp

🚨 Breakthrough in #MECFS research! Join our free webinar “From Mystery to Measurable: The Science Behind the New ME/CFS Blood Test” 🧬Learn how a 96% accurate test could transform diagnosis + treatment. 🗓️ Jan 15, 2026 | 9–10 am PT / 12- 1 pm ET. 🔗ow.ly/aZk450XiOeU

☕ Coffee with a Clinician (Jan) How were the clinical definitions of ME/CFS and Long COVID developed, and why do they matter? Without a diagnostic test, established criteria are used to guide care and research. Wed, Jan 14 | 10 am MST Free & virtual: bit.ly/3JCHAFq

Take action today! Please sign our letter to the HHS Secretary urging him to recognize people with ME/CFS and Long COVID as “medically frail” so that their access to Medicaid is protected. freakinfrail.org This petition is the 1st step. #Medicaid #PwME #MECFS #LongCovid

We're back to business with our January Newsletter massme.monkeypod.io/mailcoach/webv… #massmecfs #chronicfatigue #MyalgicEncephalomyelitis #fibromyalgia #chronicillness #invisibleillness #longcovid

May you find moments of beauty, connection, and gentle rest in the new year.