Brian Fog

#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.

A minute's silence is observed for all of those who have died

The crowd shares the love for all those affected after a lovely vocal performance of "Anyone" by Demi Lovato

A wide variety of signs pleeing for research funding, acknowledgement and care among the masked crowd

Protestors protect themselves from airborne viruses in the tight crowd on Malieveld

Healthier folks carry signs to represent their loved ones who couldn't be there themselves

1.6k people tuning in online

Thanks from Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social to @guusontheinternet.bsky.social and the organisers at @niethersteld.bsky.social

There was a program of speakers, performers and recorded messages performed from a stage

Looks super well-organised and the quality of the coverage is high

Some photos from the #PAISProtest now happening at the Malieveld in The Hague.

Looks like a nice crowd has gathered.

Thanks so much for this thoughtful coverage.

Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome Research could offer hope for ME patients – but some experts urge caution and say more studies needed

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?