The Massachusetts ME/CFS and FM Association 's Avatar

The Massachusetts ME/CFS and FM Association

@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

144 Followers  |  152 Following  |  25 Posts  |  Joined: 31.12.2024  |  2.0258

Latest posts by massmecfs.bsky.social on Bluesky

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

08.08.2025 21:07 β€” πŸ‘ 1    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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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

08.08.2025 21:06 β€” πŸ‘ 3    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
2025 Boston Waterfront 5K Recap
YouTube video by Mass MECFS & FM Association 2025 Boston Waterfront 5K Recap

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...

14.07.2025 14:29 β€” πŸ‘ 2    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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It's hot but we're not gonna stop! Check out the latest news:
massme.monkeypod.io/mailcoach/we...

#massmecfs #MECFS #fibromyalgia #longcovid #invisibleillness

14.07.2025 14:26 β€” πŸ‘ 2    πŸ” 3    πŸ’¬ 0    πŸ“Œ 0
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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

13.06.2025 14:07 β€” πŸ‘ 2    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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Newsletter time! Check it out! πŸ“°πŸ‘€
massmecfs.org/resources/ne...

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

11.06.2025 15:44 β€” πŸ‘ 4    πŸ” 3    πŸ’¬ 0    πŸ“Œ 0
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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...

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!

16.05.2025 00:58 β€” πŸ‘ 7    πŸ” 5    πŸ’¬ 0    πŸ“Œ 0
Immune Dysfunction & T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS & Long COVID
YouTube video by SolveME Immune Dysfunction & T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS & Long COVID

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...

16.05.2025 00:58 β€” πŸ‘ 5    πŸ” 5    πŸ’¬ 1    πŸ“Œ 0


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. β€œFinding the Key? Could Unraveling T-cell Exhaustion Solve ME/CFS and Long COVID” www.healthrising.org/blog/2025/05...

16.05.2025 00:54 β€” πŸ‘ 10    πŸ” 4    πŸ’¬ 2    πŸ“Œ 0
Black and white photo of a hospital ER entrance. Overlaid text reads: β€œME/CFS in the ER: What You Need to Know.” MERC logo with a stethoscope and books appears in the corner.

Black and white photo of a hospital ER entrance. Overlaid text reads: β€œME/CFS in the ER: What You Need to Know.” MERC logo with a stethoscope and books appears in the corner.

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

πŸ’™ Download & share this resource: ow.ly/NPLa50VS14e

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

13.05.2025 18:16 β€” πŸ‘ 26    πŸ” 14    πŸ’¬ 1    πŸ“Œ 2
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🧬Science Wednesdays: Types of Clinical Trial Design - Open Medicine Foundation Learn more about clinical trial design, including parallel, crossover, adaptive, and factorial structures.

🧬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 paperπŸ‘‰ www.omf.ngo/types-of-cli....

14.05.2025 16:43 β€” πŸ‘ 10    πŸ” 4    πŸ’¬ 0    πŸ“Œ 0

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.)

12.05.2025 20:52 β€” πŸ‘ 3    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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1/2 We are excited to launch our new website today, marking International ME Awareness Day. You will find us in the same place β€” massmecfs.org β€” with a fresh new look and easier navigation to the information, resources, events, and services you need. Let us know what you think!

12.05.2025 20:52 β€” πŸ‘ 6    πŸ” 3    πŸ’¬ 1    πŸ“Œ 0
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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

12.05.2025 15:44 β€” πŸ‘ 5    πŸ” 3    πŸ’¬ 0    πŸ“Œ 0

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

12.05.2025 15:04 β€” πŸ‘ 2    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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Happy to share BHC's incredible work!
@bateman_horne_center has launched the Clinical Care Guide for ME/CFS, Long COVID, and IACCsβ€”a practical, evidence-based resource for healthcare providers.

12.05.2025 15:04 β€” πŸ‘ 2    πŸ” 1    πŸ’¬ 1    πŸ“Œ 0

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

03.05.2025 14:57 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
Sunday Conversations April 2025 - ME/CFS and hEDS with Sallie Rediske
YouTube video by Mass MECFS & FM Association Sunday Conversations April 2025 - ME/CFS and hEDS with Sallie Rediske

Watch Now!
"Twisted Connections: The Dynamic Relationship of ME/CFS and Hypermobile Ehlers-Danlos Syndrome"
Sunday, April 27, 2025, 4 p.m. Eastern Time

www.youtube.com/watch?v=GtkV...

03.05.2025 14:56 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Register Now for Sunday Conversations: "Twisted Connections: The Dynamic Relationship of ME/CFS & Hypermobile Ehlers-Danlos Syndrome" 4/27 @ 4pm EST. Program is free and open to all.

www.massmecfs.org/news-events/...
#massmecfs #MECFS #chronicfatigue #ehlersdanlos #ehlersdanlossyndromeawareness

21.04.2025 15:43 β€” πŸ‘ 4    πŸ” 1    πŸ’¬ 1    πŸ“Œ 0
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It’s newsletter time and we have it all: Events, Advocacy, News, and more!
massme.monkeypod.io/mailcoach/we...
#massmecfs #MECFS #chronicfatigue #fibromyalgia #longcovid #chronicillness

21.04.2025 15:40 β€” πŸ‘ 1    πŸ” 3    πŸ’¬ 0    πŸ“Œ 0
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We are here for you.
massmecfs.org

24.03.2025 15:33 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Today is International Long COVID Awareness Day. Please take a moment to watch this video from the Long COVID Physio group.
www.youtube.com/watch?v=dmxp...
Long COVID and ME/CFS share many of the same symptoms. To all the patients and caregivers, we see you.
#mecfs #longcovid #longcovidawareness

15.03.2025 14:34 β€” πŸ‘ 10    πŸ” 4    πŸ’¬ 1    πŸ“Œ 0
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Long COVID and ME/CFS have so much in common. We see you!

#massmecfs #MECFS #chronicfatigue #longcovid #longcovidawareness #longcovidawarenessday

15.03.2025 14:31 β€” πŸ‘ 12    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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Catch up on all the news: Events, advocacy Long COVID awareness & more
Copy and paste or click the link in our profile:
massme.monkeypod.io/mailcoach/we... #massmecfs #LongCovid

14.03.2025 16:09 β€” πŸ‘ 3    πŸ” 5    πŸ’¬ 0    πŸ“Œ 0
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*Important: Schedule Change for our Gen Z/Millennial Wellness Workshop* The group will now meet on Saturday 3/15 and 4/12 at 10:30am ET. This is a free program open to MA residents.
www.massmecfs.org/news-events/...

#massmecfs #MECFS #fibromyalgia #chronicillness #longcovid #chroniclyme

04.03.2025 19:46 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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New England Meetup for those with ME and chronic illness. Registration is ongoing, Join us! www.massmecfs.org/news-events/...
#massmecfs #MyalgicEncephalomyelitis #chronicfatiguesyndome #invisibleillness #pots #longcovid #fibromyalgia

04.03.2025 19:46 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 1
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We are busy this month! 2 new groups for Millennials and Gen Z, new social media, and more! Read all about it in our Feb newsletter:
massme.monkeypod.io/mailcoach/we...
#massmecfs #MECFS #fibromyalgia #chronicillness #longcovid #pots #invisibleillness

07.02.2025 20:39 β€” πŸ‘ 4    πŸ” 4    πŸ’¬ 0    πŸ“Œ 0
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We are excited to share that we have 2 new groups for our Millennials & Gen Zers.
Register for one or both, the only restriction is where you live.
www.massmecfs.org/news-events/...
#massmecfs #MyalgicEncephalomyelitis #chronicfatigue #longcovid #chronicillness #pots #chroniclyme #fibromyalgia

04.02.2025 16:54 β€” πŸ‘ 9    πŸ” 2    πŸ’¬ 0    πŸ“Œ 0
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Time to sit by the fire and check out our January Newsletter!
massme.monkeypod.io/mailcoach/we...
#massmecfs #MECFS #chronicfatigue #longcovid #invisibleillness

16.01.2025 15:20 β€” πŸ‘ 5    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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This Sunday! Join in conversation with people who understand. All are welcome and the program is free.
Sunday Conversations: β€œGoing into the new year, what are your hopes and dreams?” A community conversation focusing on positive visions for the coming year.
Jan 19, 2025, 4pm ET

16.01.2025 15:17 β€” πŸ‘ 3    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0

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