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

"Collaboration for Change" - Newry March 2026 Professor Chris Ponting YouTube video by Hope4MEFibroNI

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

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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 Covid Quietly Rewires the Brain Researchers keep discovering more about the long-term neurological effects of SARS-CoV-2.

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

Coverage in de Volkskrant

archive.md/v5TGX

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 🙂

Email your MP about Long Covid Awareness Day

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.

Agree - the tide won’t turn until the conversation moves forward.

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

Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital

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.

I find it fascinating how constant the flow of these articles is.

It's interesting to note that they never make reference to people with severe ME or LC, such as the 21yo man in Austria who recently underwent assissted suicide due to unbearable symptoms.

#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.

Email sent to NHS elearning enquiries on 12 January 2026. Subject - Request for information. Dear NHSE elearning hub, I am making a freedom of information request (FOIA 2000) for the following data. In 2024/5, the NHS England elfh e-learning hub introduced 3 new modules on ME/CFS: 1. An introduction to ME/CFS (May 2024). 2. ME/CFS: guidance for community-based healthcare practitioners (January 2025). 3. Managing Severe ME/CFS (September 2025). Please can you tell me how many people have completed each module to date (from date of introduction), and what the breakdown is for logins by NHS staff (nhs.uk), and those in government (gov.uk), academic (ac.uk), and social care sectors (if available). I am happy for your response to be sent to this email address. Many thanks for your help, Lucy B

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.

More info on demands, the program, how to help, etc. available here

www.hetpaisprotest.nl/programma

Here is the program of speakers / topics www.hetpaisprotest.nl/programma

Thanks for sharing :)

Specific demands highlighted are:
1. Recognition for PAIS patients
2. Strucutural investment in medical research
3. Better care
4. Appropriate long-term policy

PAIS = post-acute infection syndromes, incl LC, ME, Q-fever, Lyme, Post Sepsis, ...

bsky.app/profile/usel...

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

I agree, it was so so well done.

Crowds start to disperse after closing messages - many still holding signs for the camera

"For my daughter"

A very incisive and empassioned message from the powerhouse behind @niethersteld.bsky.social - @guusontheinternet.bsky.social !

Touches on many salient points, including the long-standing injustice of those with ME/CFS, Q-Fever, etc. with no care for decades.