The Massachusetts ME/CFS and FM Association
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The Massachusetts ME/CFS and FM Association
@massmecfs.bsky.social
150 followers 150 following 36 posts
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
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massmecfs.bsky.social
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
November 12, 2025 at 2:10 PM
Reposted by The Massachusetts ME/CFS and FM Association
openmedf.bsky.social
🌍 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 6, 2025 at 4:23 PM
massmecfs.bsky.social
November Newsletter: Events, news, and updates
massme.monkeypod.io/mailcoach/we...

#massmecfs #MyalgicEncephalomyelitis #chronicfatigue #longcovid #fibromyalgia #MECFS
November 7, 2025 at 4:13 PM
massmecfs.bsky.social
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 7, 2025 at 4:12 PM
massmecfs.bsky.social
November Newsletter: Events, news, and updates
massme.monkeypod.io/mailcoach/we...

#massmecfs #MyalgicEncephalomyelitis #chronicfatigue #longcovid #fibromyalgia #MECFS
November 7, 2025 at 4:06 PM
Reposted by The Massachusetts ME/CFS and FM Association
tomkindlon.bsky.social
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
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. …
October 29, 2025 at 1:54 PM
massmecfs.bsky.social
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 29, 2025 at 2:08 PM
Reposted by The Massachusetts ME/CFS and FM Association
tomkindlon.bsky.social
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
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.
October 29, 2025 at 12:53 PM
Reposted by The Massachusetts ME/CFS and FM Association
openmedf.bsky.social
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...
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”
October 29, 2025 at 1:18 PM
massmecfs.bsky.social
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 29, 2025 at 1:53 PM
massmecfs.bsky.social
October Newsletter is out and features our Annual Event information – Register Now!
massme.monkeypod.io/mailcoach/we...

#massmecfs #chronicfatigue #MyalgicEncephalomyelitis #fibromyalgia #longcovid #MITResearch
Overlooked: Less Studied Pathologies across ME/CFS, Long COVID, and Related Illnesses
massme.monkeypod.io
October 14, 2025 at 9:10 PM
massmecfs.bsky.social
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
October 6, 2025 at 7:16 PM
Reposted by The Massachusetts ME/CFS and FM Association
cortjohnson.bsky.social
Is the Long COVID Field Missing a Major Opportunity? #longCOVID www.healthrising.org/blog/2025/09...
Is the Long COVID Field Missing a Major Opportunity? - Health Rising
Geoff’s Narration The GIST   From viral persistence to complex immune studies, to tissue sampling, to assessing heavy-duty immune treatment trials and large treatment trials, long-COVID researchers ar...
www.healthrising.org
September 25, 2025 at 8:28 PM
massmecfs.bsky.social
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
September 26, 2025 at 2:20 PM
massmecfs.bsky.social
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
NIH RECOVER TLC clinical trials for Long COVID. - Massachusetts ME/CFS & FM
massmecfs.org
September 17, 2025 at 1:27 PM
Reposted by The Massachusetts ME/CFS and FM Association
openmedf.bsky.social
This is the first strong evidence of a genetic contribution to #PEM in #MECFS.

Full publication: translational-medicine.biomedcentral.com/articles/10....
Haptoglobin phenotypes and structural variants associate with post-exertional malaise and cognitive dysfunction in myalgic encephalomyelitis - Journal of Translational Medicine
Background Myalgic encephalomyelitis (ME) is a chronic, multisystem illness characterized by post-exertional malaise (PEM) and cognitive dysfunction, yet the molecular mechanisms driving these hallmar...
translational-medicine.biomedcentral.com
September 16, 2025 at 4:46 PM
Reposted by The Massachusetts ME/CFS and FM Association
openmedf.bsky.social
OMF Collaboration Investigates Molecular Basis of Post-Exertional Malaise (PEM) 👉 Read more from Dr. Moreau: www.omf.ngo/haptoglobin-....

Key findings:
➡️ After a mild stress challenge, #pwME showed a sharp drop in haptoglobin (Hp) levels, while healthy controls did not. (1/2)
New Publication from OMF Collaboration Investigates Molecular Basis of PEM - Open Medicine Foundation
New publication reveals first strong evidence of a genetic contribution to post-exertional malaise (PEM) in ME/CFS.
www.omf.ngo
September 16, 2025 at 4:45 PM
Reposted by The Massachusetts ME/CFS and FM Association
openmedf.bsky.social
OMF has now received approval from the NIH to access plasma samples collected via the Chronic Fatigue Initiative, bringing the total number of samples for our large-scale ME/CFS biomarker project (BioQuest) to 1,000.

👉 Read the latest BioQuest update: www.omf.ngo/bioquest-upd....
A digital graphic with a dark blue background featuring abstract glowing network lines and nodes. The text in the center reads: “BioQuest Update — A Large-Scale ME/CFS Biomarker Project.”
September 3, 2025 at 5:07 PM
massmecfs.bsky.social
Latest news, MassME events, research studies and more...
massmecfs.org/resources/ne...

#massmecfs #MyalgicEncephalomyelitis #MECFS #fibromyalgia #longcovid #chronicfatigue #chronicillness #invisibledisablity
September 12, 2025 at 6:36 PM
massmecfs.bsky.social
MassME: A Home Base for People Affected By ME/CFS
Explore our August Newsletter
massmecfs.org/resources/ne...
#massmecfs #MyalgicEncephalomyelitis #chronicfatigue #longcovid #fibromylagia
August 8, 2025 at 9:07 PM
massmecfs.bsky.social
Today is Severe ME Awareness Day

We see you. We know your suffering. We are here for you.

massmecfs.org

#massmecfs #MyalgicEncephalomyelitis #mecfsawareness #SevereME #SevereMECFS #severemeday #severemecfs
August 8, 2025 at 9:06 PM
massmecfs.bsky.social
The Boston Waterfront 5K fundraiser was a huge success! Enormous thanks to all participants: team members, those who came out to cheer, those who got the word out and cheered from home, and of course, all 200 generous donors.

THANK YOU!

Watch our video recap:
www.youtube.com/watch?v=jHhT...
2025 Boston Waterfront 5K Recap
YouTube video by Mass MECFS & FM Association
www.youtube.com
July 14, 2025 at 2:29 PM
massmecfs.bsky.social
It's hot but we're not gonna stop! Check out the latest news:
massme.monkeypod.io/mailcoach/we...

#massmecfs #MECFS #fibromyalgia #longcovid #invisibleillness
July 14, 2025 at 2:26 PM
massmecfs.bsky.social
Our Spring Fundraiser culminates this Sunday at the Waterfront 5K Run/Walk/Roll.
We need your help to reach our goal! If you haven't yet donated, please do so today. Thank you!

donate.hakuapp.com/donations/ne...

#massmecfs #mccourtfoundation #bostonwaterfront5k #chronicfatigue #mecfsawareness
June 13, 2025 at 2:07 PM
massmecfs.bsky.social
Newsletter time! Check it out! 📰👀
massmecfs.org/resources/ne...

#massmecfs #chronicfatigue #MyalgicEncephalomyelitis #fibromyalgia #longcovid #chronicillness
June 11, 2025 at 3:44 PM