Massachusetts ME/CFS & FM Association

Imagine you were so sick that you felt like you had the flu and you couldn't get out of bed...Every. Day.  We don’t have to imagine, it’s our reality. It’s called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and it affects millions worldwide. 
 MassMECFS.org

The whole of Germany is lying down for people who have ME/CFS. This is called the Liegenddemo and has been happening for the last several years. It’s been going from strength to strength.

🌟 Celebrating Stefan Chin of @SciShow & Jaime Seltzer of #MEAction, as finalists in the #emergeaustralia #mecfs Awards for Journalism Excellence for the video Exercise Actually Makes Chronic Fatigue Syndrome Worse. 🔗 Watch: zurl.co/Rzsg7 Thank you Stefan and Jamie!

April showers bring May flowers, and a fresh newsletter! News, events, and more. Check it out! massmecfs.org/resources/news…
 #massmecfs #MECFS #MyalgicEncephalomyelitis #chronicfatigue #fibromyalgia #longcovid #iacci

Planning Consultant Announcement The Mass ME/CFS FM Assoc (MassME) seeks a planning consultant. After more than 40 yrs of service we stand at a crossroads. The consultant will help assess our path for evolution & sustainability
 Full details here: massmecfs.org/get-involved/r…

We heard you and we are here for you! We are now including all Northeast states in our online Meet Up group. It is free to attend, please join us! form.jotform.com/260346468999174 #massmecfs #chronicfatigue #fibromyalgia #chronicillness #longcovid #invisibleillness #pots

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.