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Reposted by The Massachusetts ME/CFS and FM Association

Pillow Writers @pillowwriters.bsky.social · 12/05/2026

Crikey!

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Reposted by The Massachusetts ME/CFS and FM Association

Lisa Geiszler @melovewarrior.bsky.social · 12/05/2026

Waiting for my copy, hoping it comes today for World ME Day!! #FrailAndFurious #MillionsMissing #ME #ME/CFS @MEaction

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Reposted by The Massachusetts ME/CFS and FM Association

Bateman Horne Center @batemanhornecenter.bsky.social · 12/05/2026

“What Is Myalgic Encephalomyelitis Like? Patient & Caregiver Perspectives” shares 80 firsthand accounts from people living with and caring for those with ME worldwide. BHC was honored to write the book foreword and chapter forewords for this important project by WIMEL writers. Available on Amazon.

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 22/05/2026

Sunday Conversations “Wireless Risks & Safer Technology Solutions “ Recording and Slide Presentation available now! massmecfs.org/events/sunda... #massmecfs #MyalgicEncephalomyelitis #chronicfatigue #fibromyalgia #MECFS #chronicillness #longcovid #chronicfatiguesyndome #iacci

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Reposted by The Massachusetts ME/CFS and FM Association

Open Medicine Foundation (OMF) @openmedf.bsky.social · 20/05/2026

🧬 Science Wednesdays Sensitivity & specificity are terms that describe how good something is at correctly identifying a condition (e.g. people within a population that have a disease). Sensitivity focuses on finding true positives or not missing cases. Specificity focuses on finding true negatives.

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Reposted by The Massachusetts ME/CFS and FM Association

Solve M.E. @solveme.bsky.social · 20/05/2026

Join us for a webinar with panelists from DecodeME and ActionForME to discuss their Catalyst Award-winning study on Sequence ME and Long Covid and how it could impact the search for biomarkers and subtypes. ow.ly/x0fJ50YZ86w #MEAwarenessHour

Headshots of Prof. Chris Ponting, Sonya Chowdhury, Andy Devereux-Cooke, and Dr. Jessica Maya are featured in an ad for a webinar on ME/CFS and Long COVID biomarkers and subtypes scheduled for June 10.

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Reposted by The Massachusetts ME/CFS and FM Association

ME/CFS San Diego @mecfssd.bsky.social · 20/05/2026

National Institute on Minority Health and Health Disparities (NIMHD) webinar 6/22, 1–2 PM ET: Updates on health disparities research and scientific priorities, followed by Q&A. forms.office.com/pages/respon...

forms.office.com

Microsoft Forms

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Reposted by The Massachusetts ME/CFS and FM Association

Lisa Geiszler @melovewarrior.bsky.social · 12/05/2026

Please Buy & Share this book. #FrailAndFurious #MillionsMissing #ME #ME/CFS @MEaction

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 30/03/2026

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/260346468999... #massmecfs #chronicfatigue #fibromyalgia #chronicillness #longcovid #invisibleillness #pots

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 12/03/2026

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/sunda... #massmecfs #MECFS #chronicfatiguesyndome #fibromyalgia #iacci #longcovid

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 12/03/2026

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 www.longhauler-advocacy.org/lcamonth2026 #massmecfs #longcovid #longcovidawareness #chronicfatigue #chronicillness #MECFS #iacci

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Reposted by The Massachusetts ME/CFS and FM Association

Solve M.E. @solveme.bsky.social · 24/02/2026

🚨 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: ow.ly/rlfQ50Yl4yN

Collage highlighting Solve ME/CFS Catalyst Awards honorees with portraits and their research topics on ME/CFS and Long Covid.

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 28/02/2026

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

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 09/02/2026

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

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 09/02/2026

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

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Reposted by The Massachusetts ME/CFS and FM Association

Tom Kindlon @tomkindlon.bsky.social · 11/01/2026

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

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"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

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 30/12/2025

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

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 19/12/2025

Wishing you peace and comfort this holiday season. xo MassME

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 19/12/2025

December Newsletter, Holiday Edition! Sending you warm thoughts for the holiday season. massme.monkeypod.io/mailcoach/we... #massmecfs #MyalgicEncephalomyelitis #MECFS #chronicfatigue #fibromyalgia #longcovid #chronicillness

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Reposted by The Massachusetts ME/CFS and FM Association

Open Medicine Foundation (OMF) @openmedf.bsky.social · 02/12/2025

⏰ 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

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Reposted by The Massachusetts ME/CFS and FM Association

Billy Hanlon @bhanlon15.bsky.social · 30/11/2025

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...

healthrising.org

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

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Reposted by The Massachusetts ME/CFS and FM Association

Billy Hanlon @bhanlon15.bsky.social · 01/12/2025

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...

news.uthscsa.edu

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...

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Reposted by The Massachusetts ME/CFS and FM Association

Open Medicine Foundation (OMF) @openmedf.bsky.social · 01/12/2025

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.”

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Reposted by The Massachusetts ME/CFS and FM Association

Open Medicine Foundation (OMF) @openmedf.bsky.social · 01/12/2025

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.

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 12/11/2025

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

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Reposted by The Massachusetts ME/CFS and FM Association

Open Medicine Foundation (OMF) @openmedf.bsky.social · 06/11/2025

🌍 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

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 07/11/2025

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

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Reposted by The Massachusetts ME/CFS and FM Association

Tom Kindlon @tomkindlon.bsky.social · 29/10/2025

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. …

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 29/10/2025

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

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Reposted by The Massachusetts ME/CFS and FM Association

Tom Kindlon @tomkindlon.bsky.social · 29/10/2025

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

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Reposted by The Massachusetts ME/CFS and FM Association

Open Medicine Foundation (OMF) @openmedf.bsky.social · 29/10/2025

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”

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 29/10/2025

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 06/10/2025

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

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 26/09/2025

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

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Reposted by The Massachusetts ME/CFS and FM Association

Open Medicine Foundation (OMF) @openmedf.bsky.social · 16/09/2025

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)

omf.ngo

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.

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Reposted by The Massachusetts ME/CFS and FM Association

Open Medicine Foundation (OMF) @openmedf.bsky.social · 03/09/2025

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.”

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 08/08/2025

MassME: A Home Base for People Affected By ME/CFS Explore our August Newsletter massmecfs.org/resources/ne... #massmecfs #MyalgicEncephalomyelitis #chronicfatigue #longcovid #fibromylagia

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 14/07/2025

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...

youtube.com

2025 Boston Waterfront 5K Recap

YouTube video by Mass MECFS & FM Association

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