Disappointing myself and others is the most important skill to develop with ME.

Thank you so much to Hope4MEFibroNI for hosting this event in Newry last month. Talks now on YouTube: www.youtube.com/watch?v=KHxz... www.youtube.com/@hope4mefibr... #MEcfs @decodemestudy.bsky.social

TRAILER: Buried Alive with M.E. I’ve spent the last months making a film for M.E. Kills, an online exhibition by A Quiet Storm. People with ME die every week. Many more are left to rot in dark rooms without care, disbelieved and dismissed. It’s a living death. #pwme #millionsmissing #severeME 1/

Some #LongCovid news—Rep. Valerie Foushee has introduced a resolution to recognize Long Covid Awareness Month! 🧵 on how you can support this resolution—and help pave the way for further action!

1) Two age peaks: a fascinating paper confirmed two peaks for when people get ME/CFS: around 16 years old and in the mid thirties. The early onset in adolescence was associated with severe ME/CFS, an infectious onset, and having relatives with the disease. A brief summary...

How long do the effects of Covid really last? Researchers are still discovering new neurological issues.

ℹ️ Controversy in NL as government-commissioned research into ME/CFS will not be allowed to used patented drugs. This does not apply to Long COVID (currently Sonlicromanol is being trialled)! Dr. Jeroen Den Dunnen has had to scrap a grant proposal because of this.

“Lockdown over? Not for me.” The LC Association in the Netherlands is encouraging people to put posters up in their neighbourhood. Wonder if it’s inspired by @berlin-buyers-club.bsky.social 🙂

Can you spare one minute to support children with Long Covid today? Use our template to write to your MP. longcovidkids.eaction.org.uk/awarenessday #LongCovidAwareness #ChildrensRights @lcawarenessint.bsky.social @longcovidsupport.bsky.social @longcovidphysio.bsky.social @longcovidsos.bsky.social

Prof. Simon Carding has been awarded €7.5M through the EU Horizon grant for his work on ME/CFS.

ME is not chronic fatigue. Medical neglect of ME kills. Your record on reporting this is so bad, I had to insist on being left out of it (with a complaint to the news desk). #MaeveInquest

I find it appalling you would write such a piece and not even once mention that there are people currently being starved by the NHS, 5 years after Maeve died for those exact same reasons, and despite a coroners prevention of future deaths report demanding urgent action & safe hospital beds for us.

It wouldn't do to mention severe ME in articles like this. The conceit is that it's a Victorian-era "malaise" that puts a dampener on your life periodically. The reality for many is dark rooms, eye masks, feeding tubes and medically assisted death.

#Savannah #vsME update. A good MDT which ran over to twice the length of time allocated. Dr Weir and I were both invited, spoke at length and were heard. The absence of NHS ME specialists _anywhere_ in the UK is the biggest probem for every ICB, including Lewisham and Greenwich.

About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS... 🧵 1/n

Savannah Victora-May has been in hospital for 11 months with severe ME; a dearth of specialist treatment has contributed to her situation. The Govt’s Final Delivery Plan committed to exploring a specialised service for very severe ME. *What* is happening to prevent more cases such as Savannah’s?

1) Reminder: the Horizon Europe work program for 2026-2027 includes a call on post-infection long-term conditions. It has a budget of 6-8 million per project and seems ideally suited for ME/CFS and Long Covid research. The opening date is 10 February 2026.

If you know anything about the history of post-infectious illnesses, like Long Covid and ME/CFS, this happening in The Hague is hugely symbolic. A crisis of choice built on hubris and perpetuated by failed systems that refuse to learn from destroying millions of lives.

Guus Liebrand aan het woord...(foto: Lizzy Smits) Een woord van dank aan #NietHersteld en Guus die echt een wonder hebben verricht door zoveel mensen fysiek op de been te krijgen en online thuis mee te laten demonstreren. Diep buiging! Overige foto's: Yvonne Smits #PAISProtets #NietHersteld

Some photos from the #PAISProtest now happening at the Malieveld in The Hague. Looks like a nice crowd has gathered.

ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long. There's a huge BUT coming ...🧵 www.theguardian.com/society/2025...

#MaeveInquest update! All credit to NHS Devon for innovating the first step towards an ME specific NHS pathway. For planned and unplanned hospital admissions, details are now public and available here, www.royaldevon.nhs.uk/services/mya...

The Irish health service has initiated a process to develop a clinical guideline for ME (#MyalgicEncephalomyelitis). I am honoured to be part of its Steering Group The process so far has been extremely progressive I am hugely optimistic that a world-leading guideline will be produced #pwME #MECFS

As a person with Very Severe ME, I hate how articles describe ME. “chronic fatigue, some people can’t exercise and work, often people have headaches and nausea”. I haven’t * left my bed in 2 years * spoke in 1.5 years * heard a human voice in 1.5 years And that’s how you describe my illness?

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?

Today (Sat 9th) from 6pm on LBC -Labour is trying to deter small boat crossings and neutralise Farage with scary videos. - Have ever been told your ME ‘isn’t real’? -Badenoch claims Black & white working class kids are discouraged from applying to Oxbridge & pushed to vocational quals by teachers.

I am once again contemplating this banger.

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

The BMJ has now published my rapid response to Miller et al's Opinion piece. www.bmj.com/content/389/...

Friends, please follow @meactnet.bsky.social and other #MyalgicEncephalomyelitis #MECFS #LongCovid #IACC orgs and join in #WorldMEDay #MillionsMissing actions in May and beyond ❤️. #GreatestMEdicalScandal #TeachMETreatME #pwME #SevereME #MEKills #DontLetMEDie #JohnVsJonVsME

My friend @catofrederiks.bsky.social is launching a fundraiser for her spinal fusion. She has ME/CFS and has severe issues. Please share around, any 5€ is more than welcome 🙏🏻 🙏🏻

This is deeply shocking and disturbing, the opposite of scientific good practice. As I see it, a group of diehards promoting a discredited treatment (exercise "therapy" for ME/CFS patients) are seeking to stifle medical progress - to protect their reputations. And Cochrane has kowtowed to them. 🧵

ME ⊂ LC

I'm impressed by this handout on PEM. This is attached along with the information every GP needs to register patients with the Long COVID clinics in the Netherlands. I will put the salient text below in thread.

“We’re getting by, but we’re … Jesus, I don’t know. We’re probably going to have to tap into our retirement funds. It’s really impacted our life financially, medically, just everything.” www.hrdive.com/news/employe...

So bookmarks aren’t a thing over here?

#NEISvoid in the Netherlands: Does anyone in NL know of a facility that could provide tube feeding and also accommodate the needs of severe ME (even the stimulation of a home visit is causing crashing)? CC @uselesspriest.bsky.social

Shared research agenda setting in #LongCovid. Grateful to colleagues for being a part of this important open access work: "Priorities for Research, Education, Clinical Practice, and Policy From the Long COVID Physio International Forum." @longcovidphysio.bsky.social journals.lww.com/cptj/pages/a...

Anyone has any experience with StadHolland or DSW? My therapist has reached an agreement with them so without my #Restitutiepolis I need to go with either to continue (paid) care, but I don’t know them and I’m very overwhelmed. #NEISVoid #Nederland #Zorg #Zorgverzekering #Combinatiepolis #Help

HELP! Huishoudelijke hulp via de #WMO. Be have been offered: Veade, Origin Zorg, Tzorg and Wens je zorg. Does anyone have any experience with them or advice? We need to choose but we have zero knowledge and really need the help and that they mask, since I am high risk for COVID. #Thuishulp #NEISVoid

Survivalism but it's just a person with chronic illness.

I set up a GFM for Long COVID research. Everything will go to PLRC. gofund.me/cc9ab16a

A common response in my experience is, “I know someone who got Long COVID and they recovered.” I don’t think this one is cognitive dissonance so much as it’s an “unfortunate” reflection of the fact that many people did recover from transient sequelae.

Yes, I’m definitely #ThereForME. Too many #pwME live with darkness. We’re all poorer for it. It’s time for @DHSCgovuk and @NHSuk to finally give #ME & #LongCovid the response they deserve.

Everything is on the patient. Everything. Finding out how the illness works. Finding out you need to pace (despite what you're told). Deciding how to much risk to take with infection. Finding out how to mitigate infection. Deciding how much risk to take with treatment.

Did monetelukast help anyone? I'm aware of the black box warning.

❌ 62% of people are not confident their GP understands ME ❌ Lack of specialist ME healthcare provision forces many to go private You can help us educate the next gen of doctors through our medical student essay competition! Donate today 👇 tinyurl.com/afme-bgcc24 #pwME #MECFS #ChristmasChallenge

🚨 URGENT: Covid Inquiry🚨 Time is running out! Submit your ANONYMOUS story to the Every Story Matters portal before Christmas. After this, data on children will stop being as useful. Make sure CV/CEV families are heard! If you've submitted before, you can submit again. 1🧵

📣 OMF's StudyME Registry Has Over 11,000 Participants! 🎉 Will You Help Us Reach 15,000? Accelerate research for #MECFS and #LongCOVID through research participation. Join StudyME—a free, global recruitment tool—today 👉 ow.ly/Bhi350UlKlQ #pwME #pwLC #mecfs #longcovid

📢 New publication by Christopher Armstrong, PhD, & colleagues: "Discriminating ME/CFS and Comorbid Conditions Using NMR Metabolomics in UK Biobank." 👉 ow.ly/psV750UilEj There are only 4 days left to TRIPLE your impact! 🫶Donate hope: www.omf.ngo?form=TGN2024!