As May Momentum comes to a close, we want to leave you with a taste of why our researchers do what they do. Watch the full conversation here: https://youtu.be/FPhECAf7gz0

“I don’t think I can think of another condition that would be treated this way.” Dr Anna Brooks, Liggins Institute. A powerful opening to Zoe Madden-Smith’s award-winning RE:News documentary on #MECFS

‼️ BURIED ALIVE WITH M.E.‼️ For #MEAwarenessMonth I made a severe ME body‑bag “dance” film about death within the ME community. youtu.be/XhrAhGkrGuQ?... I also joined the online expo ME Kills by A Quiet Storm, which goes live on May 12th, 1/ #pwme #myalgicE #millionsmissing

Initial results from the Big Survey of >5000 pwME are deeply disturbing… disbelief by NHS healthcare professionals, made to feel their ME was their fault, traumatic encounters with clinicians. This can not continue. More on 11 May👇🏽. Thanks @kacheston.bsky.social and @actionforme.bsky.social.

Help! I'm looking for people with ME/long covid or similar who do something creative (eg painting, photography) that is inspired by nature to feature in my book. Ideally people more severely affected than me, so bed bound or partially bed bound #mecfs

Nearly 20 years ago, Donni opened her own kindergarten. Four years in, everything changed. 🤝 She now supports OMF to find real answers for #MECFS & #LongCOVID. 🔗 Read Donni's story and join Hope Builders: https://www.omf.ngo/donni-beyond-the-glass/#MECFS#LongCOVID ART: “BEYOND THE GLASS” by Donni

Today is #LongCOVIDAwarenessDay — a moment to recognize the reality facing hundreds of millions worldwide. 🌎 #LongCOVID is not a disease fading into the past. For many, it is a daily struggle with no clear end and no approved treatment in sight. 🔗 https://www.omf.ngo/2026-long-covid-awareness-day

To honor #LongCOVIDAwarenessDay, Open Medicine Foundation (OMF) #MEAction Network Solve M.E. & Bateman Horne Center once again joined forces as #UnitedForME. We gathered a set of resources from our orgs to inform & empower:https://bit.ly/3Na4mX4#LongCOVIDAwarenessDay

From the OMF-supported MERC with @BatemanHorne: During a crash, #pwME may struggle to think or communicate clearly. Communication cards help patients point to needs like water, pain, light sensitivity, or emergencies. Find these cards in our Crash Survival Guide: https://bit.ly/44MgSS9

wtaf is Alastair Miller doing ANYWHERE NEAR an education session for GPs on ME???? 😱 www.pulsetoday.co.uk/news/clinica...

Is the OMF’s ME/CFS BioQuest Study the Study We’ve All Been Waiting For? #MECFS www.healthrising.org/blog/2026/02...

@ashleydaltonmp.bsky.social Your words “these must become never events” PLEASE INTERVENE TO SAVE LIFE Savannah has not eaten for 9 weeks. There are no NHS services for severe ME - 7 months since publication of the Delivery Plan for ME/CFS www.meresearch.org.uk/claims-of-nh...

#SaveSavannah #SevereMErgency #pwME please repost and boost the below. Nobody is willing to intervene. The health minister must step in and prevent a tragedy

#pwME URGENT - looking for someone ME literate who can sit with Savannah in hospital in London from 4:30pm TODAY for a few hours. Travel will be reimbursed. Please share widely #SaveSavannah #SevereMErgency @tomkindlon.bsky.social @abrokenbattery.bsky.social @drelke.bsky.social

Hi! Our online art gallery, A Quiet Storm, will host an open call group exhibition on International ME/CFS Awareness Day, May 12, 2026. The submissions will open on March 12th. Our website is currently updated to a dark theme. Full statement below! 1/9 #MECFS #pwME #OpenCall #OnlineExhibition

MEAction UK is working on a survey of #pwME with the University of East Anglia (UEA) Medical School to assist in developing a research application. For more Info & take part: meaction.org.uk/news/2026/02...#pwME #MyalgicEncephalomyelitis

Tessa Munt MP highlighted Savannah’s case in Parliament. She said the Government’s ME delivery plan says avoidable deaths should be ‘never events’ but her critical condition was made worse by inadequate treatment and without specialist services cases like this will keep recurring.

NEW 🚨 A South London hospital is still putting severe ME patient Savannah's life at risk and a clinician who psychologises ME might be why. www.thecanary.co/uk/analysis/...

Update shared by Action for ME: their Chief Executive, Sonya Chowdhury, is personally advocating for Savannah and supporting her case.

I've taken three weeks of medical leave because of bruised ribs sustained in a fall on the pavement. I'm slowly trying to get back to work and catch up. Here's an insightful and moving piece someone sent me about living with severe ME. virology.ws/2026/01/27/t...

A newly published protocol in npj Women's Health introduces the MELLOW study, a global collaboration between OMF’s Melbourne and Uppsala teams. 🔗 Read the full protocol: https://www.nature.com/articles/s44294-025-00120-9. #WomensHealth #MECFS #LongCOVID #CircadianRhythm #HormoneResearch

OMF is proud to partner with Vumedi, a global education platform for healthcare professionals, to bridge research and clinical practice. Our expert-led content on #MECFS, #LongCOVID, and related diseases is now live—helping clinicians worldwide stay up to date with evidence-based learning.

URGENT: An NHS hospital is starving a severe ME patient & has now stopped giving her fluids. Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk. @h-sharland.bsky.social has the story www.thecanary.co/uk/analysis/...

Remember to sign up for our mailing list to keep informed about work. meaction.org.uk/contact #MyalgicEncephalomyelitis

#MEActionUK emailed @NHSEngland about incorrect info on its ME/CFS webpage. Our request will be 'added to their backlog for a member of the website team to pick up when there is capacity' bit.ly/3NoAFRF#MEActionUK#MyalgicEncephalomyelitis #HealthEquality

Petition on twitter I couldn’t quickly find on here so posting link, for those in UK, ‘Amend the 28-day rule for the Carer’s Allowance for carers giving hospital care’ petition.parliament.uk/petitions/75...

My #MECFS scandal explainer video has just passed 200,000 views. Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since. medium.com/@abrokenbatt...

“Wessely read a version of the writing & threatened to sue me if it didn’t include the other side.” - Mendenhall This raises serious questions about academic pressure, power, and whose voices shape the narrative around ME and Long Covid.

People with the most severe #LongCOVID symptoms represent the most clinically urgent population, yet they remain absent from the evidence base that guides care. They are not beyond the reach of science; they are where real progress begins. Read more from @neurologistmom.bsky.social: bit.ly/49TMXdz

Recent research shows blood from people with ME/CFS and Long COVID directly harms healthy muscle, reducing force, stressing mitochondria, and causing structural breakdown. Results implicate blood-borne drivers of muscle weakness, exertion intolerance, and PEM. 🔗 doi.org/10.1088/1758...

🛍️ Imagine if every item you added to your cart could help fuel OMF's vital #MECFS and #LongCOVID research. With iGive, you can shop online at 1,700+ stores, and a percentage of your purchase will go to OMF, at no extra cost to you. Shop & Support 👉 www.igive.com/welcome/lp19....

Take action today! Please sign our letter to the HHS Secretary urging him to recognize people with ME/CFS and Long COVID as “medically frail” so that their access to Medicaid is protected. freakinfrail.org This petition is the 1st step. #Medicaid #PwME #MECFS #LongCovid

On January 21 at 1:00pm ET, Linda Tannenbaum (CEO and Founder) and Danielle Meadows, PhD (VP of Research Programs) will host a webinar with the objective of answering your questions about OMF and its research. Register for the webinar: ow.ly/IyGz50XWboB Submit question: ow.ly/81OM50XWboA

Our #ThereForME blog is back! Today, Dr Katharine Cheston writes about her collaboration with @actionforme.bsky.social on the 2025 Big Survey. Katharine explains why large-scale charity surveys are so important for ME research and treatment, and how you can get involved. Link in next post 👇

Utterly heartbreaking to hear that 20yr old #pwME Ella Copley has died Deepest condolences to her incredible Mother Jo who couldnt have fought harder for her @tessamunt.bsky.social @joplatt.bsky.social @ashleydaltonmp.bsky.social unless measures are taken urgently this will continue to happen 2 pwME

Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Sep 29-Oct 5. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...

On LBC, callers Ann and Annie told Natasha Devon that the rise in long-term sickness is linked to long Covid — and compared the lack of support to what people with #MECFS have faced for decades (10 mins) youtu.be/BoVpKmsTNFY?...

Today is my birthday, and I’m turning 34. Do I feel my age? No. The perception of age vanished at some point while I became chronically ill. Still, there are fleeting moments when I’m reminded of it. 1/9 #MECFS #pwME #Photography @openmedf.bsky.social

This is the first strong evidence of a genetic contribution to #PEM in #MECFS. Full publication: translational-medicine.biomedcentral.com/articles/10....

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)

Visited for 3 minutes today. A NHS London hospital doing everything it can. The contrast with how it was before #MaeveInquest made me weep. Staff are protecting Savannah from visitors, without intruding on her autonomy. Very high bar. Strain could learn much from them. @ashleydaltonmp.bsky.social

petition.parliament.uk/petitions/73... Please save lives by signing and reposting thank you.

🚨 MILLIONS at higher risk will lose NHS Covid vaccines this autumn. Lives will be at risk. The NHS will face more pressure. Covid is as serious as 'flu and also requires updated seasonal vaccines. We can stop this! Sign + share our petition (on next post) 1/ #KeepCovidBoosters

From our friends at @meactnet.bsky.social: 📢 Help Us Save Telehealth

ICYMI: OMF's research centers in Uppsala and Melbourne published a study of steroid hormones. The study identified changes in steroid-steroid relationships that indicate there is a dysfunction in HPA axis function and progestogen pathways. 👉 ow.ly/Hh1z50WvrLb

Please join the Community Symposium on the Molecular Basis of ME/CFS with opening remarks by Ronald W. Davis, PhD, Stanford University, followed by a welcome from Linda Tannenbaum, OMF CEO. 🗓️ September 5, 2025 ⏲️ 8:00 am – 2:30 pm PST 👉 Register here: ow.ly/9zRg50WIbO3.

From Ronald W. Davis, PhD: Community Symposium on the Molecular Basis of ME/CFS returns! 👉 Register for the Community Symposium: ow.ly/vm1S50WIbO2. #pwME #MECFS