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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 2d

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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Reposted by The Massachusetts ME/CFS and FM Association

Cort Johnson @cortjohnson.bsky.social · 13d

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

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

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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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 21d

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

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Reposted by The Massachusetts ME/CFS and FM Association

Open Medicine Foundation (OMF) @openmedf.bsky.social · 22d

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

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Reposted by The Massachusetts ME/CFS and FM Association

Open Medicine Foundation (OMF) @openmedf.bsky.social · 22d

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

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Reposted by The Massachusetts ME/CFS and FM Association

Open Medicine Foundation (OMF) @openmedf.bsky.social · Sep 3

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 · 26d

Latest news, MassME events, research studies and more...
massmecfs.org/resources/ne...

#massmecfs #MyalgicEncephalomyelitis #MECFS #fibromyalgia #longcovid #chronicfatigue #chronicillness #invisibledisablity

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · Aug 8

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 · Aug 8

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

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

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

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

It's hot but we're not gonna stop! Check out the latest news:
massme.monkeypod.io/mailcoach/we...

#massmecfs #MECFS #fibromyalgia #longcovid #invisibleillness

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · Jun 13

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

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

Newsletter time! Check it out! 📰👀
massmecfs.org/resources/ne...

#massmecfs #chronicfatigue #MyalgicEncephalomyelitis #fibromyalgia #longcovid #chronicillness

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Reposted by The Massachusetts ME/CFS and FM Association

Rivka Solomon @rivkabluesky.bsky.social · May 16

And even more, I hope everyone will check out the Selin Lab website (link here: www.umassmed.edu/selinlab/) so they can learn more about our work, and then… yes, then DONATE! Your donations allow this dedicated team of researchers to continue with their important work. Let’s find some answers!

Selin Lab

Selin Lab, UMass Chan Medical School. Conducting cutting-edge research focused on understanding human adaptive immune responses and T cell responses in multiple neuroinflammatory and infection-associa...

www.umassmed.edu

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Reposted by The Massachusetts ME/CFS and FM Association

Rivka Solomon @rivkabluesky.bsky.social · May 16

I hope everyone also watches the
SolveME webinar of April 29, 2025, to hear more from Liisa Selin MD, PhD, Anna Gil PhD & Roshan Kumar PhD. You also hear from both me & Megan Fitzgerald, the 2 Patient Reps on this exciting research project. The webinar is here: www.youtube.com/watch?v=2DQZ...

Immune Dysfunction & T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS & Long COVID

YouTube video by SolveME

www.youtube.com

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Reposted by The Massachusetts ME/CFS and FM Association

Rivka Solomon @rivkabluesky.bsky.social · May 16

Thx, @cortjohnson.bsky.social, for writing about the groundbreaking researchers Liisa Selin MD, PhD, Anna Gil PhD & Roshan Kumar PhD. I am lucky to get to work w/ them. “Finding the Key? Could Unraveling T-cell Exhaustion Solve ME/CFS and Long COVID” www.healthrising.org/blog/2025/05...

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Reposted by The Massachusetts ME/CFS and FM Association

Open Medicine Foundation (OMF) @openmedf.bsky.social · May 13

ER visits can be tough with #MECFS and #LongCOVID. This popular MERC's guide helps providers manage OI, MCAS, sensory concerns & more.

💙 Download & share this resource: ow.ly/NPLa50VS14e

@batemanhornecenter.bsky.social #MERC #MedEdMatters #pwME #pwLC #UrgentCare

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Reposted by The Massachusetts ME/CFS and FM Association

Open Medicine Foundation (OMF) @openmedf.bsky.social · May 14

🧬Science Wednesdays

Clinical trials are critical for identifying and implementing effective treatments for diseases like #MECFS and #LongCOVID.

Learn about different types of clinical trial design and explore the LIFT protocol paper👉 www.omf.ngo/types-of-cli....

🧬Science Wednesdays: Types of Clinical Trial Design - Open Medicine Foundation

Learn more about clinical trial design, including parallel, crossover, adaptive, and factorial structures.

www.omf.ngo

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

2/2 (Please note that we have moved content around as part of the site redesign, and existing bookmarks you may have had may be broken. We apologize for any inconvenience.)

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

1/2 We are excited to launch our new website today, marking International ME Awareness Day. You will find us in the same place — massmecfs.org — with a fresh new look and easier navigation to the information, resources, events, and services you need. Let us know what you think!

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

MassMe has again arranged for several bridges in MA to be illuminated in blue on May 12.
Boston, Cambridge-> the Zakim & Longfellow Bridges. Worcester->the Burns Bridge, Quincy->the Fore River Bridge Be sure to tag us @massmecfs if you post a photograph!
#WorldMEDay #MEcfs

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

Designed to improve diagnosis and care for post-infectious conditions, this chapter-based guide offers real-world insights from expert clinicians.
Reserve your copy: bit.ly/4jScKFu
#MECFS #LongCOVID #IACCs #MedicalEducation #AccessToCare

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

Happy to share BHC's incredible work!
@bateman_horne_center has launched the Clinical Care Guide for ME/CFS, Long COVID, and IACCs—a practical, evidence-based resource for healthcare providers.

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The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · May 3

Yes -- Just posted. Check out our most recent Bluesky post. Thanks for watching.

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