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...
#FlashForward to March 2026 - NHS is *still* 'failing' ME patients.
There is still no specialist service, particularly for severe and very severe ME.
There are still doctors who do not recognise ME and stigmatise against it.
UK Government has still not pledged any funding for treatment research.
Congratulations to @sharonhodgsonmp.bsky.social on her new role Minister for Public Health and Prevention.
Sharon has been a strong supporter of people with ME/CFS and has spoken in a number of parliamentary debates. Here are some highlights from a debate in 2019.
1) "Given the lack of sound research support for graded exercise therapy in ME/CFS, the contraindication of graded exercise therapy by best practice guidelines in the US and the UK and patient reports of iatrogenic harm, the RACGP guideline [..] should be withdrawn immediately."
Sky News don't seem as excited as the rest of us.
m.youtube.com/watch?v=Npvw...
TW: Assisted Suicide
Clip from German TV. Kim has #MECFS and describes how her illness has progressed, leaving her bedbound and sensitive to light and sound.
At 25, she talks about her decision to apply for assisted suicide, saying she can no longer live like this.
This is so horrendous and entirely unnecessary. Everyone responsible from government mininisters to NHS admin to nurses should hand their heads in shame.
Israel and the US have launched an unprovoked and illegal attack on a sovereign nation during ongoing diplomatic negotiations.
We should not allow the UK to be dragged into another American war.
We must do everything possible to stop this and uphold peace in the region.
A warning.
All the worst people in the country are now shitting themselves.
The mother of all campaigns is now going to be directed against the Green Party.
It will be an unrelenting smear campaign.
The Greens need to be ready for that - and so does everyone on the left.
5) I think these analyses can be vary valuable but only when we have much larger and better datasets. As the paper writes: "much larger omics studies of ME/CFS are needed to advance the field in terms of identifying reliable molecular signatures."
1) This study scanned existing ME/CFS datasets on gene expression and proteomics to look for common genes or patterns. The mitochondrial genes MT-RNR1 and MT-RNR2 had lower expression in ME/CFS cases in two studies.
Unfortunately, the results don't look very robust...
BBE INDEPTH Polanski and Farage don't agree. But they have more in common than you might think 1 hour ago Laura Kuenssberg > Sunday with Laura Kuenssberg One is a former stockbroker from the south who, by his own proud admission, loves smoking, drinking and women. The other's a proud vegan, gay, northern former actor, who told me he'd never drunk a drop. But the jubilant Zack Polanski and Nigel Farage have rather a lot in common.
Laura K and BBC News editorial in full-on meltdown mode now, by the looks of it
"Soft-left socialism? Fascism, basically"
(Spoiler, so you don't have to endure what I just read: the thing they have in common is they're both leaders of political parties in the UK, and sometimes on the telly)
There's never anything for #SevereMecfs
The government tells us that PIP and other disability benefits provision will be dependent on an NHS consultant/specialist report.
There are none.
#mecfs
It really is fascinating how overt it now is that there are certain - really not controversial - ideas that you aren’t allowed to say on television.
5) The BACME model and clinical care is still based on the same idea of rehabilitation as 30 years ago, only with the worst parts about GET and deconditioning cut out. And it's being justified by a unfounded dysregulation model.
ME/CFS patients deserve better than this.
If you want just one illustration of how differently #LongCovid and #ME are being treated in the UK and Germany:
I just searched BBCiplayer and German ZDF for ‚Long Covid‘ - iPlayer 0 results, ZDF 133 results; ‚ME/CFS‘ - iPlayer 24 results, none having anything to do with ME, ZDF 35, all related
Thanks for getting in touch. We are indeed particularly interested at present in people able to get to us for a blood test. Also, please bring your ‘healthy control’ friends. Contact:
Altmannlongcovidstudy@imperial.ac.uk
Worth catching up on if you missed this
@daltmann.bsky.social how can you get involved in the Rosetta Stone Study as a patient, is it only for people who can travel to London, or are there remote options?
#LongCovid
#ME
www.bbc.co.uk/programmes/m...
In other words, I haven't produced the triumphant recovery narrative I'd intended, but nor is this some bitter exposé of the charlatanism of brain retraining. Brain retraining wasn't miraculous, as I'd longed for it to be; and it also wasn't the nonsense that in my grief and disappointment I've wanted to denounce it as being. There would have been a kind of comfort in either conclusion.
Brain retraining has done nothing for this woman‘s ME/CFS.
How she could come to the conclusion that brain retraining is not nonsense, I don’t even understand from that article.
What does she think it has done for her relapsing and remitting condition??
#ME
www.theguardian.com/society/2026...
Reform UK's Gorton and Denton candidate Matt Goodwin holds a visiting professorship at a university centre allied with at least five ‘race science’-linked organisations including the front publication of a rebranded Nazi eugenics foundation - a network whose central figures he has defended and promo
Very few people are willing to have a real conversation about why everything feels off.
Getting diagnosed with endometriosis kind of felt like getting diagnosed with ME/CFS all over again. The years long diagnostic process, the lack of good treatment options, the lack of funding for research, and in the back of my mind, knowing the symptoms can get much much worse.
Such an oddly familiar picture:
9) The authors of the letter plead to focus on the severely ill: "With limited resources, we believe the focus must be on medical care of severe and very severe cases, including nutrition and other life support, to reduce unnecessary deaths."
7) The focus on a rehabilitation pathway is misguided, as if ME/CFS patients are ill for a brief period and now need help to return to health and normal life. "For many with ME/CFS illness is lifelong and there is no reason to think that any such time frame or pathway applies.."
6) Edwards et al. also question the need for ‘interdisciplinary’ care and multidisciplinary teams. What patients need is a physician and specialist nurse with knowledge of ME/CFS who can an provide accurate diagnosis and long-term follow up.
Brainwashing, 2026 edition. This paper shows how X's algorithmic feed shifts people's views rightwards. It's a sophisticated, highly effective form of reorientation. And it is utterly chilling.
If you're still on that platform, unhook yourself now.
www.nature.com/articles/s41...
But I kept on pushing. I didn’t know I had ME, and I sure as hell didn’t believe I had it once I realised it existed. I fully believed I would 100% recover, but I didn’t because mindset won’t cure this.
Pushing through only made me lose it all. 10/11
I have experienced all the levels of ME from very mild to extremely severe. Even when I was very mild it was hard for me to live a normal life. I barely held a job. 9/11
Image of a DNA double helix against a soft blue background with light particles. The Action for ME logo appears in the top right corner. Text on the image reads: “Research News – SequenceME and Long Covid study launches. The world’s largest long-read, whole-genome study of any disease.”
Quote from Action for ME CEO Sonya Chowdhury.
Quote from Complex Disorders Alliance CEO Amy Rochlin.
Quote from Schmidt Iniative for Long Covid CEO Dr John Redd
Today we’re delighted to launch Sequence ME & Long Covid - the world’s largest long-read, whole-genome study of any disease 🔬
🧬 This £20 million ground breaking initiative will explore the root causes of ME and Long Covid, with the aim of accelerating progress towards diagnostics and treatments.
