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

Pillow Writers@pillowwriters.bsky.social · 4mo ago

This is a book designed to explain to policy makers, healthcare professionals and friends and family what life with Myalgic Encephalitis is actually like. Buy it, share it and help us promote it to a wider audience wimel2.wordpress.com

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

@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/mOKJ50YZ86t

Welcome! 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...

ow.ly

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

Sunday Conversations - Recording available now! www.youtube.com/watch?v=iDGD... #massmecfs #chronicfatigue #fibromyalgia #MECFS #chronicillness #longcovid

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

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

Click here for the latest news and more! massmecfs.org/resources/ne... #massmecfs #chronicfatigue #MyalgicEncephalomyelitis #longcovid #fibromyalgia #MECFS

🚨 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: https://ow.ly/rlfQ50Yl4yN

📢 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: https://ow.ly/VnlJ50YmLTQ

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

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

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

We're back to business with our January Newsletter massme.monkeypod.io/mailcoach/we... #massmecfs #chronicfatigue #MyalgicEncephalomyelitis #fibromyalgia #chronicillness #invisibleillness #longcovid

The 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...

Trump administration escalates attack on Minnesota with more immigration agents

Another 2,000 ICE and homeland security agents will reportedly head to the state, targeting immigrant populations

theguardian.com

ME 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

The 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...

‘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

theguardian.com

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

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

USA 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...

⏰ 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

Yale 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...

Quick 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

medicine.yale.edu

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-...

'I want to live my life': Fibromyalgia sufferers being failed by NHS www.bbc.com/news/article...

'I want to live my life': Fibromyalgia sufferers being failed by NHS

Researchers and patients are calling for the NHS to overhaul its care of fibromyalgia patients.

bbc.com

We 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.

Fierce 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...

NIH grant cuts have disrupted hundreds of clinical trials, study finds

The 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...

fiercebiotech.com

In 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.

The 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...

Local activist catches Massport in ICE-related lie

Emails 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.

lexobserver.org

A moving tribute to another young life lost to severe #MEcfs. Things have to change. #SevereMEcfs #IACC #LongCovid. www.instagram.com/p/DQwyde5ADX...

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