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 37 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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Reposted by The Massachusetts ME/CFS and FM Association
openmedf.bsky.social
⏰ 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
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.”
December 2, 2025 at 3:39 PM
Reposted by The Massachusetts ME/CFS and FM Association
bhanlon15.bsky.social
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...
Could "Disequilibrium" Be Causing the Orthostatic Intolerance Found in ME/CFS and Long COVID? - Health Rising
Disequilibrium - the inability to stand or walk without swaying - may be contributing to the orthostatic intolerance (increased symptoms while upright) in ME/CFS and long COVID
www.healthrising.org
November 30, 2025 at 10:40 PM
Reposted by The Massachusetts ME/CFS and FM Association
bhanlon15.bsky.social
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...
New center launches with focus on chronic infectious diseases - UT Health San Antonio
The University of Texas at San Antonio marked the launch of its new Center for Chronic Infectious Diseases on Nov. 14 with an inaugural symposium highlighting research on post-acute sequelae of SARS-C...
news.uthscsa.edu
December 1, 2025 at 8:54 PM
Reposted by The Massachusetts ME/CFS and FM Association
openmedf.bsky.social
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
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.”
December 1, 2025 at 2:31 PM
Reposted by The Massachusetts ME/CFS and FM Association
openmedf.bsky.social
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-...
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.
December 1, 2025 at 10:01 PM
massmecfs.bsky.social
Routine Medicare Telehealth Coverage is Extended for 80 Days
Visits are being covered back to Oct. 1.
www.aarp.org/medicare/tel...
Routine Medicare Telehealth Coverage is Extended for 80 Days
Visits are being covered back to Oct. 1. AARP, coalition asks Congress to make the home-based care permanent
www.aarp.org
November 18, 2025 at 4:36 PM
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