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andreajoliat.bsky.social
@andreajoliat.bsky.social
69 followers 170 following 4 posts
MEcfs advocate, parent of son with MEcfs.
Posts Replies Media Videos
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andreajoliat.bsky.social
A moving tribute to another young life lost to severe #MEcfs. Things have to change. #SevereMEcfs #IACC #LongCovid. www.instagram.com/p/DQwyde5ADX...
November 8, 2025 at 2:18 PM
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cgatist.bsky.social
Well deserved strategic funding - €50 million *per year* for a decade - on ME/CFS and Long Covid research. Spent wisely this could be a game changer. Germany now leads & other countries need to follow. Goal to “decipher the causes and mechanisms and develop new treatments”. #MEcfs #longcovid
November 14, 2025 at 11:15 AM
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mecfsskeptic.bsky.social
2) The decade runs from 2026 to 2036 and and has a total budget of € 500 million, so it will be approximately € 50 million per year.

In comparison, NIH funding for ME/CFS in the US is < $15 million.
November 14, 2025 at 8:30 AM
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mecfsskeptic.bsky.social
1) 🇩🇪 Some really good news! Germany plans to invest half a billion euros in research on diseases such as ME/CFS and Long Covid.

They are calling it "The National Decade Against Post-Infectious Diseases"
November 14, 2025 at 8:30 AM
andreajoliat.bsky.social
A moving tribute to another young life lost to severe #MEcfs. Things have to change. #SevereMEcfs #IACC #LongCovid. www.instagram.com/p/DQwyde5ADX...
November 8, 2025 at 2:18 PM
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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
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exceedhergrasp1.bsky.social
Hey, #MedSky & #SciSky! New text from Elsevier out today, "The Scientific Basis of Fatigue", with multiple chapters on different diseases, including #MECFS, COVID, Parkinson's, stroke and MS.

Proud to be the co-author of the #MECFS chapter with authors from Mayo and Bateman-Horne! More info:🧪
meactnet.bsky.social #MEAction Network @meactnet.bsky.social · Oct 1
Stellar new work from @grachstephanie.bsky.social, @exceedhergrasp1.bsky.social, @batemanhornecenter.bsky.social's Bell and Yellman & @raviganeshmd.bsky.social in the Elsevier text 'The Scientific Basis of Fatigue'! The book has chapters on #MECFS, COVID, Parkinson’s, stroke, and multiple sclerosis.
Text-based graphic with one photo. Text: New publication. Managing myalgic encephalomyelitis/chronic fatigue syndrome: a new narrative. a chapter in a new Elsevier textbook written by coauthors from #MEAction, Mayo Clinic Rochester and the Bateman-Horne Center. “I was honored to co-author this chapter with colleagues from Mayo Clinic and the Bateman-Horne Center to give clinicians and researchers the tools they need to better recognize, study and treat ME/CFS.” Jaime Seltzer, Scientific Director, #MEAction Photo: Jaime Seltzer (white woman with long, dark hair) wearing glasses and cream blazer and red top slightly smiling.
October 1, 2025 at 5:16 PM
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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
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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
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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
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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
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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
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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
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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
andreajoliat.bsky.social
I'm running the Boston Waterfront 5K to raise money for #MassME an organization that supports those with #MEcfs #LongCovid #Fibromyalgia. No donation is too small. fundraisers.hakuapp.com/andrea-joliat
Boston Waterfront 5K
Please help with my fundraising efforts for the Massachusetts ME/CFS Association! &nbsp;No donation is too small. The Massachusetts ME/CFS and FM Association is a lifeline for people living with myalg...
fundraisers.hakuapp.com
June 2, 2025 at 2:25 PM
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openmedf.bsky.social
⏰ Time is running out! Only 48 hours left to support OMF’s May Momentum campaign! Your gift will help us expand our clinical trial network, allowing us to test more treatments and accelerate progress for people with #MECFS and #LongCOVID.

👉 Donate: www.omf.ngo?form=donatenow
Graphic featuring a heart and text that reads: "Donate — there are only 48 hours left in OMF's May Momentum campaign. Give hope today." The May Momentum logo appears at the bottom.
May 30, 2025 at 3:22 PM
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bhanlon15.bsky.social
Washington Post: 'Long covid patients are desperate for treatments. These trials may help.'

'Some trials are focusing on drugs that target the immune system, which is affected by different pathways to long covid.'

www.washingtonpost.com/wellness/202...
Long covid patients are desperate for treatments. These trials may help.
Some trials are focusing on drugs that target the immune system, which is affected by different pathways to long covid.
www.washingtonpost.com
May 16, 2025 at 2:11 PM
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rivkabluesky.bsky.social
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
May 16, 2025 at 12:59 AM
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rivkabluesky.bsky.social
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
May 16, 2025 at 12:58 AM
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rivkabluesky.bsky.social

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...
May 16, 2025 at 12:54 AM
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massmecfs.bsky.social
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
May 12, 2025 at 3:45 PM
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massmecfs.bsky.social
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
May 12, 2025 at 3:04 PM
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massmecfs.bsky.social
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
April 21, 2025 at 3:40 PM
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massmecfs.bsky.social
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
April 21, 2025 at 3:43 PM
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blueheronfarm.bsky.social
Between this and the doctor from Brown, I would say green card holders should not travel abroad now, and if they must, they need to avoid Logan. Both incidents happened there. They have at least one nazi employed.

Also, folks should probably start protesting at that airport.
nhpr.org New Hampshire Public Radio @nhpr.org · Mar 14
A New Hampshire man with a green card was detained by immigration officers at Logan Airport and is being held by U.S. Immigration and Customs Enforcement at the Donald W. Wyatt detention facility in Central Falls, Rhode Island.
www.nhpr.org/nh-news/2025...
Green card holder from New Hampshire 'interrogated' at Logan Airport, detained
Fabian Schmidt’s family said they are unsure of why he is being held. They said he has a recently renewed green card, and no active issues in court.
www.nhpr.org
March 15, 2025 at 12:55 PM