Reposted by @andreajoliat.bsky.socialLisa Geiszler @melovewarrior.bsky.social · 12/05/2026Please Buy & Share this book. #FrailAndFurious #MillionsMissing #ME #ME/CFS @MEaction 0216
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 22/05/2026Sunday 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 021
Reposted by @andreajoliat.bsky.socialME/CFS San Diego @mecfssd.bsky.social · 20/05/2026@solveme.bsky.social @decodemestudy.bsky.social & @actionforme.bsky.social free webinar 6/10 11AM PT: Catalyst Award study implications in the search for ME/CFS & LC biomarkers & subtypes ow.ly/mOKJ50YZ86tow.lyWelcome! You are invited to join a webinar: Sequence ME & Long Covid: The Search for ME/CFS and Long Covid Biomarkers and Subtypes. After registering, you will receive a confirmation email about joini...The DecodeME Project is the largest genetic study of ME/CFS conducted to date and has identified eight genetic signals where people with ME/CFS differ from those without, linked to the immune and nerv... 011
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 30/03/2026We 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 032
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 24/03/2026Sunday Conversations - Recording available now! www.youtube.com/watch?v=iDGD... #massmecfs #chronicfatigue #fibromyalgia #MECFS #chronicillness #longcovid 022
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 12/03/2026This 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 013
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 12/03/2026March 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 053
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 12/03/2026Click here for the latest news and more! massmecfs.org/resources/ne... #massmecfs #chronicfatigue #MyalgicEncephalomyelitis #longcovid #fibromyalgia #MECFS 011
Reposted by @andreajoliat.bsky.socialSolve 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 01812
Reposted by @andreajoliat.bsky.socialSolve M.E. @solveme.bsky.social · 28/02/2026📢 New webinar! Dr. Liisa Selin, Dr. Ayano Kohlgruber, & Dr. Roshan Kumar will discuss "The Discovery of Target Antigens for Dysfunctional T Cells in #MECFS and #LongCOVID." WHEN: Tuesday, April 28 @ 3:00 pm PT / 6:00 pm ET. Register here: ow.ly/VnlJ50YmLTQ 0118
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 28/02/2026We 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 131
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 09/02/2026Catch 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 064
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 09/02/2026Good 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 084
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 11/01/2026We're back to business with our January Newsletter massme.monkeypod.io/mailcoach/we... #massmecfs #chronicfatigue #MyalgicEncephalomyelitis #fibromyalgia #chronicillness #invisibleillness #longcovid 024
Reposted by @andreajoliat.bsky.socialBilly Hanlon @bhanlon15.bsky.social · 11/01/2026The Guardian: 'Trump administration escalates attack on Minnesota with more immigration agents' “I don’t think any government in history has had to fight a war against the federal government every single day,” the state’s governor said “We are under assault.." www.theguardian.com/us-news/2026...theguardian.comTrump administration escalates attack on Minnesota with more immigration agentsAnother 2,000 ICE and homeland security agents will reportedly head to the state, targeting immigrant populations 2106
Reposted by @andreajoliat.bsky.socialTom Kindlon @tomkindlon.bsky.social · 11/01/2026ME Research UK: Netherlands research body (ZonMw) has launched a c€3.5m call for research applications into clinical research into effectiveness of existing medicines (off-patent and available in the Netherlands) which may prove effective for ME/CFS. tinyurl.com/kzrxwbwp #MEcfs #CFS #PwME 3176
Reposted by @andreajoliat.bsky.socialBilly Hanlon @bhanlon15.bsky.social · 11/01/2026The Guardian: '‘This is not normal’: Minneapolis on edge and angry after ICE killing of woman amid federal surge' 'City targeted by Trump has seen swarm of immigration agents on the streets – and residents say the tension is palpable' www.theguardian.com/us-news/2026...theguardian.com‘This is not normal’: Minneapolis on edge and angry after ICE killing of woman amid federal surgeCity targeted by Trump has seen swarm of immigration agents on the streets – and residents say the tension is palpable 151
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 19/12/2025December Newsletter, Holiday Edition! Sending you warm thoughts for the holiday season. massme.monkeypod.io/mailcoach/we... #massmecfs #MyalgicEncephalomyelitis #MECFS #chronicfatigue #fibromyalgia #longcovid #chronicillness 011
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 30/12/2025May you find moments of beauty, connection, and gentle rest in the new year. 011
Reposted by @andreajoliat.bsky.socialBilly Hanlon @bhanlon15.bsky.social · 02/12/2025USA Today: 'Chronic fatigue syndrome drains millions of people, and still defies easy answers' 'The core of this illness manifests as a severe and incapacitating fatigue..." says Dr. Hector Bonilla 'The hallmark symptom..is “post-exertional malaise" www.usatoday.com/story/life/h...usatoday.comChronic fatigue syndrome drains millions of people, and still defies easy answersHere’s what chronic fatigue syndrome is, why it happens and how people diagnosed with it can find relief. 1225
Reposted by @andreajoliat.bsky.socialOpen 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 01510
Reposted by @andreajoliat.bsky.socialBilly Hanlon @bhanlon15.bsky.social · 01/12/2025Yale Medicine: Quick Question: Do We Know What Causes Long COVID? Iwasaki: "There’s been so much progress that’s been made in this area of Long COVID research...there are hypotheses that we’re testing..both at the basic science level and..through..clinical trials' medicine.yale.edu/news-article...medicine.yale.eduQuick Question: Do We Know What Causes Long COVID?During an interview on the Health & Veritas podcast, Akiko Iwasaki, PhD, discussed post-acute infection syndromes, like Long COVID, and what we’re learning 12615
Reposted by @andreajoliat.bsky.socialOpen Medicine Foundation (OMF) @openmedf.bsky.social · 01/12/2025It’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-... 0123
Reposted by @andreajoliat.bsky.socialFiona C @drfionac.bsky.social · 28/11/2025'I want to live my life': Fibromyalgia sufferers being failed by NHS www.bbc.com/news/article...bbc.com'I want to live my life': Fibromyalgia sufferers being failed by NHSResearchers and patients are calling for the NHS to overhaul its care of fibromyalgia patients. 0104
Reposted by @andreajoliat.bsky.socialOpen Medicine Foundation (OMF) @openmedf.bsky.social · 20/11/2025We want to introduce a new style of research communications that we plan on starting (on a trial basis) in 2026 when OMF publishes a research paper: OMF Journal Club. Learn more: ow.ly/iKw150XuO2G. 💛All donations to OMF are TRIPLED! Donate hope: ow.ly/3gmX50XuO2I. 072
Reposted by @andreajoliat.bsky.socialBilly Hanlon @bhanlon15.bsky.social · 18/11/2025Fierce Biotech: ''NIH grant cuts have disrupted hundreds of clinical trials, study finds" '...Bhattacharya has discussed the importance of funding research on Long COVID in interviews...' www.fiercebiotech.com/research/nih...fiercebiotech.comNIH grant cuts have disrupted hundreds of clinical trials, study findsThe second Trump administration has been defined by widespread cuts to federal spending, including at the National Institutes of Health (NIH). | The second Trump administration has been defined by wid... 021
Reposted by @andreajoliat.bsky.socialOpen Medicine Foundation (OMF) @openmedf.bsky.social · 18/11/2025In this interview, Dr. Jonas Bergquist and Dr. Alain Moreau talk about their main ideas behind #MECFS, including an immune system that is too active in the brain and spinal cord, inherited factors, and how genes are expressed. 👉 ow.ly/fUYM50XtwW1. 0207
Reposted by @andreajoliat.bsky.socialLexington Observer @lexobserver.bsky.social · 16/11/2025The Massachusetts Port Authority (Massport) has been lying to locals about US Immigration and Customs Enforcement (ICE) operations at Hanscom Air Field. Read more at this link: lexobserver.org/2025/11/12/l...lexobserver.orgLocal activist catches Massport in ICE-related lieEmails between Massport and an airfield operator at Hanscom show Massport has gotten advanced notice of ICE flights out of Hanscom. Massport has repeatedly denied getting such notice when asked. 074
Reposted by @andreajoliat.bsky.socialandreajoliat.bsky.social @andreajoliat.bsky.social · 08/11/2025A moving tribute to another young life lost to severe #MEcfs. Things have to change. #SevereMEcfs #IACC #LongCovid. www.instagram.com/p/DQwyde5ADX... 083
Reposted by @andreajoliat.bsky.socialChris Ponting @cgatist.bsky.social · 14/11/2025Well 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 0366
Reposted by @andreajoliat.bsky.socialME/CFS Science @mecfsscience.org · 14/11/20252) 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. 1193
Reposted by @andreajoliat.bsky.socialME/CFS Science @mecfsscience.org · 14/11/20251) 🇩🇪 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" 37828
andreajoliat.bsky.social @andreajoliat.bsky.social · 08/11/2025A moving tribute to another young life lost to severe #MEcfs. Things have to change. #SevereMEcfs #IACC #LongCovid. www.instagram.com/p/DQwyde5ADX... 083
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 06/10/2025Registration 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 1105
Reposted by @andreajoliat.bsky.socialIt's ME(Jaime) @exceedhergrasp1.bsky.social · 01/10/2025Hey, #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:🧪 813748
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 26/09/2025We are so happy to announce that we will have Beth Pollack as our guest speaker for our Annual Meeting! Details coming soon! MassMECFS.org 043
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 17/09/2025MassME 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 #corecommunitymassmecfs.orgNIH RECOVER TLC clinical trials for Long COVID. - Massachusetts ME/CFS & FM 044
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 12/09/2025Latest news, MassME events, research studies and more... massmecfs.org/resources/ne... #massmecfs #MyalgicEncephalomyelitis #MECFS #fibromyalgia #longcovid #chronicfatigue #chronicillness #invisibledisablity 033
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 14/07/2025It's hot but we're not gonna stop! Check out the latest news: massme.monkeypod.io/mailcoach/we... #massmecfs #MECFS #fibromyalgia #longcovid #invisibleillness 023
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 14/07/2025The 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.com2025 Boston Waterfront 5K RecapYouTube video by Mass MECFS & FM Association 021
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 13/06/2025Our 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 021
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 11/06/2025Newsletter time! Check it out! 📰👀 massmecfs.org/resources/ne... #massmecfs #chronicfatigue #MyalgicEncephalomyelitis #fibromyalgia #longcovid #chronicillness 043
andreajoliat.bsky.social @andreajoliat.bsky.social · 02/06/2025I'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-joliatfundraisers.hakuapp.comBoston Waterfront 5KPlease help with my fundraising efforts for the Massachusetts ME/CFS Association! No donation is too small. The Massachusetts ME/CFS and FM Association is a lifeline for people living with myalg... 3156
Reposted by @andreajoliat.bsky.socialOpen Medicine Foundation (OMF) @openmedf.bsky.social · 30/05/2025⏰ 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 064
Reposted by @andreajoliat.bsky.socialBilly Hanlon @bhanlon15.bsky.social · 16/05/2025Washington 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...washingtonpost.comLong 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. 23516
Reposted by @andreajoliat.bsky.socialRivka Solomon @rivkabluesky.bsky.social · 16/05/2025And 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!umassmed.eduSelin LabSelin 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... 075
Reposted by @andreajoliat.bsky.socialRivka Solomon @rivkabluesky.bsky.social · 16/05/2025I 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...youtube.comImmune Dysfunction & T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS & Long COVIDYouTube video by SolveME 155
Reposted by @andreajoliat.bsky.socialRivka Solomon @rivkabluesky.bsky.social · 16/05/2025 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... 2104
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 12/05/2025MassMe 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 053
Reposted by @andreajoliat.bsky.socialThe Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 12/05/2025Designed 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 021
