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

A Dutch #pwME urgently needs TPN (Total Parenteral Nutrition) because she has gastroparesis and cannot tolerate food or any other form of tube feeding. But the hospital refuses, saying they don’t provide this to pw ME. Is there anyone in the international community who can help?

no paywall full story full story archive.is/2025.08.09-2...

The Management Team are delighted to announce DecodeME’s initial DNA results & discuss what this means for #pwME & future research. A huge thanks to all our participants for giving their time, energy & DNA to the project. Learn more about our findings: shorturl.at/XOVJ1

Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. - Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s

(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more. These findings reflect the lived experience of thousands of #pwME. Thanks to all our participants & supporters who made this possible! Read a summary of our results: shorturl.at/pgsjk

DECODE ME has published its results. Massive congratulations to @cgatist.bsky.social and team in Edinburgh. Let’s hope this is the start of a paradigm shift in how we view, research and treat this dreadful illness. www.decodeme.org.uk/initial-dna-...

The initial DNA results from DecodeME are coming this week! We will release them on our website on Wednesday 6th August at 7pm (approx). We're letting you know the timing in advance so you can pace beforehand. Thank you to our participants & supporters.

On the outdated, flawed and harmful 'current' review on exercise in #MECFS. From one of Cochrane's founder members: "Given the Cochrane Collaboration’s reliance on their exceptional status and members, that is untenable. Not retiring influential out-of-date reviews is a ticking time bomb."

Update from Isla’s mother @swiftsandswallows.bsky.social , “We are very grateful for the overwhelming support from the ME community, it honestly means such a lot. For now though we need time to digest what's happened, to regroup and to catch up on sleep.”

www.change.org/p/save-savan... www.change.org/p/the-nhs-mu... www.change.org/p/save-karen...

Within a week of the plan being published, There were three petitions for people with severe ME being held against their will by the NHS. And now this mother of a child with ME being *arrested* for her death despite the harms caused by THE NHS!!!

This is utterly horrific. The UK seems to be especially hostile towards ME patients & their families. Reason 48952 why finding a bio marker is so crucial: so authorities do not arrest/charge parents for a *disease*. 😭 And authorities themselves are harming the sister by removing her 😭

This is Isla at age 8. She died at age 18 with severe ME/CFS. Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.

@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.

Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights

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. 👉 Read the paper summary: ow.ly/eiNt50WvrLa