@massmecfs.bsky.social
To improve the lives of all people affected by ME/CFS, Fibromyalgia, Long COVID, and other Infection-Associated Chronic Conditions and Illnesses (IACCIs) through advancing awareness, care, treatment and research. https://www.massmecfs.org
Collage highlighting Solve ME/CFS Catalyst Awards honorees with portraits and their research topics on ME/CFS and Long Covid.
🚨 New Catalyst Awards! Solve is funding two groundbreaking studies to advance urgently needed treatment and diagnostic research for #MECFS and #Long Covid.
Read more here:
https://ow.ly/rlfQ50Yl4yN
We are excited 2 hear from Dr. Aimee Nefcy as she shares her story of being a physician & a patient! Please join us 4 our next Sunday Conversations, 3/15 @ 4pm ET
massmecfs.org/events/sunda...
#massmecfs #MECFS #MyalgicEncephalomyelitis #mecfsawareness #chronicfatigue #longcovid #fibromyalgia
Good News! Recent legislation authorized an extension of many of the Medicare telehealth flexibilities through December 31, 2027.
Details here: telehealth.hhs.gov/providers/te...
#massmecfs #medicare #telehealth #medicaretelehealth #chronicillnessawareness
Catch up on the latest, the Feb newsletter is out:
massmecfs.org/resources/ne...
Better yet, subscribe!
massmecfs.org/resources/ne...
#massmecfs #MyalgicEncephalomyelitis #MECFS #fibromyalgia #chronicillness #iacci #longcovid #chronicfatigue
r "In 2025, scientists made a significant step towards understanding the pathophysiology of ME/CFS. It may not be a breakthrough, but we're uncovering more pieces of the puzzle." According to ME/CFS Science, the "most interesting M E/CFS research studies" of 2025 included work from: Professor Chris Ponting Dr Nuno Sepulveda 4... Assistant Professor Rob Mist Professor Carmen 11%, Scheibenbogen Dr Bupesh Prusty r All of whom have received funding from ME Research UK. ME/CFS Science, "2025: looking back on a year of ME/CFS research" 30' December 2025. RESEARCH UK INFORM. INFLUENCE. INVEST. SCO36942
ME Research UK:
According to ME/CFS Science, the "most interesting #MECFS research studies" of 2025 included work from Chris Ponting, Rob Wüst, Bupesh Prusty, Nuno Sepúlveda, and Carmen Schiebenbogen, all of whom have received funding from ME Research UK.
Read more: bit.ly/49mIlev
#PwME #CFS
We're back to business with our January Newsletter
massme.monkeypod.io/mailcoach/we...
#massmecfs #chronicfatigue #MyalgicEncephalomyelitis #fibromyalgia #chronicillness #invisibleillness #longcovid
May you find moments of beauty, connection, and gentle rest in the new year.
30.12.2025 03:27 — 👍 1 🔁 1 💬 0 📌 0
Wishing you peace and comfort this holiday season.
xo MassME
December Newsletter, Holiday Edition!
Sending you warm thoughts for the holiday season.
massme.monkeypod.io/mailcoach/we...
#massmecfs #MyalgicEncephalomyelitis #MECFS #chronicfatigue #fibromyalgia #longcovid #chronicillness
The image shows all OMF Directors, Maureen Hanson & Linda Tannenbaum. At the bottom, there’s a blue overlay with white text that reads: “Last Day to Triple Your Impact” Below that is the Giving Tuesday logo with the red heart-shaped “V.”
⏰ 3x Match Ends Today! Today is #GivingTuesday, marking the final hours of our Triple Giving November campaign!
There are just a FEW HOURS LEFT to have your donation tripled —up to $1 million! 💙 Give today and help make a difference: www.omf.ngo?form=donate-...
#pwME #pwLC #MECFS #LongCOVID
Health Rising: 'Could “Disequilibrium” Be Causing the Orthostatic Intolerance Found in ME/CFS and Long COVID?'
'If Miwa is right and disequilibrium is contributing to problems with standing, then the treatment focus shifts a bit.'
www.healthrising.org/blog/2025/11...
UT Health San Antonio: 'New center launches with focus on chronic infectious diseases'
'The University of Texas at San Antonio marked the launch of its new Center for Chronic Infectious Diseases..an inaugural symposium highlighting research on..long COVID...'
news.uthscsa.edu/new-center-l...
Estelle holds a white sign with black text that reads: “ME/CFS is a profound loss of identity. It is watching most of the things we once held dear growing further out of reach.” Below the photo, on a blue background, large white text reads: “48 hours left! Make your gift count 3x.Donate today: www.omf.ngo.”
Only 48 hours left to make your gift count 3x ⏳✨
Triple Giving November is your chance to help accelerate research into #MECFS and #LongCOVID. Every donation is tripled through December 2 (up to $1M). There’s still time!
💙 Donate today: ow.ly/kUgC50XA0Mb
Quote from Emily: “Living in constant pain is unbearable. I support OMF because their research provides hope for people like me suffering from ME/CFS and Long COVID.” In the background is a dark room with light filtering through a lace-covered window on the left.
It’s time to reduce the suffering and symptom severity faced by people with #MECFS & #LongCOVID. Your donation of any amount supports collaborative research to find answers.
Let's make these final hours count. Donate today to have your gift matched 3x: www.omf.ngo?form=donate-...
Routine Medicare Telehealth Coverage is Extended for 80 Days
Visits are being covered back to Oct. 1.
www.aarp.org/medicare/tel...
This weekend, Zoom with us! Join our Sunday Community Conversations meeting all about Disability. The program is free, and all are welcome.
Details here: form.jotform.com/243518011897...
#massmecfs #chronicfatigue #MyalgicEncephalomyelitis #fibromyalgia #disabilty #disabilityawareness
🌍 People worldwide used their limited energy to finish “ME/CFS is…” Their voices show the challenges, losses & urgent need for change. Thanks to matching donors, every gift to OMF is tripled up to $500K!
👉 Donate: www.omf.ngo?form=donate-....
#mecfs #pwME #mecfsresearch
November Newsletter: Events, news, and updates
massme.monkeypod.io/mailcoach/we...
#massmecfs #MyalgicEncephalomyelitis #chronicfatigue #longcovid #fibromyalgia #MECFS
Watch now! The recording is available for our 2025 Annual Meeting featuring MIT Research Scientist, Beth Pollack.
www.youtube.com/watch?v=15WR...
#massmecfs #mecfsreseach #longcovidreseach #chronicillnessresearch #invisibleillnessresearch
November Newsletter: Events, news, and updates
massme.monkeypod.io/mailcoach/we...
#massmecfs #MyalgicEncephalomyelitis #chronicfatigue #longcovid #fibromyalgia #MECFS
Hospital Guidance: Post-Exertional Malaise (PEM) - Care Requirements CLINICAL WARNING: When the patient is in PEM, any extra activity (sitting up, walking, answering questions) can worsen symptoms, reset recovery, and accelerate long-term decline. Strict protection of rest is required. Overnight Care Guidance Lighting and Noise: Keep the room dark and silent overnight. Avoid unnecessary door openings. Use minimal light if checks are required. Sleep Protection: Do not wake for routine observations unless clinically essential. Cluster any checks to reduce disturbance. Environment: Ensure call bell, water, and medications are within reach before settling for the night. Communication: Avoid questions or conversation if the patient wakes. Speak quietly and keep interactions minimal. Escalation: If pain, tachycardia, or instability occurs, respond calmly, minimise sensory exposure, and escalate as clinically indicated. Documentation: Overnight staff should record sleep protection strategies and PEM episode status at shift start and end. Personal Care - Showering and Hygiene Daily shower prompts are not required. Please be guided by the patient as to when capacity allows. General Principle: Patient will indicate readiness for washing or showering. No need to prompt daily. Frequency: Showering may be limited to once a week or less during severe PEM. Over-exertion can worsen symptoms. Alternatives: Patient may use wet wipes or gentle seated wash in lieu of shower as tolerated. Assistance: Provide quiet, minimal support (e.g., washcloths, seated wash). Avoid standing or prolonged exertion. Environment: Keep lighting low and surroundings quiet. Ensure seating for safety if required. Aftercare: Allow full recovery time after shower; avoid further activity immediately afterwards. Shift Handover Note - Include in SBAR S-Situation: PEM episode Yes No | Start: | Severity: mild/mod/severe B- Background: ME/CFS with PEM; significant light/noise sensitivity; cognitive overload risk. …
A patient who created a popular sheet on how to deal with somebody in postexertional malaise (PEM) has adapted it for hospital staff
#MEcfs #LongCovid #PostExertionalMalaise #PEM
Our Wellness Workshop is open to residents of Massachusetts.
We meet monthly on Tuesdays from 3:00-4:30pm ET. Please join us!
Full details here: form.jotform.com/253006012968...
#massmecfs #MyalgicEncephalomyelitis #chronicfatigue #fibromyalgia #LongCOVID #chronicillness #pots #dysautonomia
News Release 29-Oct-2025 Some acute and chronic viral infections may increase the risk of cardiovascular disease Prevention measures, including vaccination, may play important role in cutting the risk of serious cardiovascular events, according to a new study in Journal of the American Heart Association Peer-Reviewed Publication American Heart Association FacebookXLinkedInWeChatBlueskyMessageWhatsAppEmail Research Highlights: A review of 155 scientific studies found influenza and COVID infections raised the risk of heart attack or stroke as much as three-to five-fold in the weeks following the initial infection. Viruses that linger in the body, such as HIV, hepatitis C and varicella zoster virus (the virus that causes shingles), can lead to long-term elevations in the risk of cardiovascular events. The study researchers say preventive measures, including vaccination, may play an important role in reducing the risk of heart attacks and strokes, especially in people who already have heart disease or heart disease risk factors.
News Release 29-Oct-2025:
"Some acute and chronic viral infections may increase the risk of cardiovascular disease: Prevention measures, including vaccination, may play important role in cutting the risk of serious cardiovascular events"
www.eurekalert.org/news-release...
#Covid #Flu
The image shows Danielle Meadows and David Systrom standing in a clinical setting. Both are smiling and facing the camera. Text on the image reads: “SCIENCE WEDNESDAYS – Oxygen Uptake Efficiency”
Oxygen uptake efficiency slope (OUES) is an indicator of cardiorespiratory health. In #MECFS, OUES has been found to be decreased, which means that some people with ME/CFS consume oxygen less efficiently.
👉 Learn more: www.omf.ngo/oxygen-uptak...
Our Wellness Workshop is open to residents of Massachusetts.
We meet monthly on Tuesdays from 3:00-4:30pm ET. Please join us!
Full details here: form.jotform.com/253006012968...
#massmecfs #MyalgicEncephalomyelitis #chronicfatigue #fibromyalgia #LongCOVID #chronicillness #pots #dysautonomia
October Newsletter is out and features our Annual Event information – Register Now!
massme.monkeypod.io/mailcoach/we...
#massmecfs #chronicfatigue #MyalgicEncephalomyelitis #fibromyalgia #longcovid #MITResearch
Registration is now open for our 2025 Annual Meeting with MIT Research Scientist, Beth Pollack!
massmecfs.org/events/annua...
#massmecfs #MyalgicEncephalomyelitis #MECFS #fibromyalgia #chronicfatigue #longcovid #invisibleillness
Is the Long COVID Field Missing a Major Opportunity? #longCOVID www.healthrising.org/blog/2025/09...
25.09.2025 20:28 — 👍 6 🔁 4 💬 0 📌 0
We are so happy to announce that we will have Beth Pollack as our guest speaker for our Annual Meeting! Details coming soon!
MassMECFS.org
MassME is proud to sign on to this letter encouraging subgroup tracking and analysis in the NIH RECOVER TLC clinical trials for Long COVID.
massmecfs.org/advocacy/nat...
#massmecfs #MEAction #SolveMe #openmedicinefoundation #batemanhornecenter #renegaderesearch #redefiningmecfs #corecommunity
