11/ “(Contd) The inability to participate in daily activities leads to a profound loss of identity. Clinicians must recognize that they are treating a patient whose entire life structure has been destabilized.” #MEcfs #CFS #PwME

10/ “The ripple effect touches every facet of life. Relationships strain under the weight of the illness. Financial stability often collapses (contd).” #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #pwme

2/ “You might think you know what tired feels like. But this is different. Research suggests [ME/CFS] creates a wall. A brick wall. Even simple mental exertion or physical or mental activity hits you hard. It is called post exertional malaise. It feels like your battery is not just empty but broken”

Remember when every leader wanted their picture taken with Greta? She is still that truth teller, they just can't face the truth of their crimes.

March 31, 2020:

"People do not have to get repeatedly sick just because their kids attend daycare or school or take a school bus.” 👏🏼 👏🏼 👏🏼 ottawa.citynews.ca/2025/12/21/s...

Just doing a clear out and found this letter of mine in the ME Association magazine in response to the psychiatrist, Peter White. In my humble opinion, since 2000 he has done more harm to #MECFS patients than anyone else in the world. #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS #PwME

“We were treated as the enemy." “I felt very written off by society.” We are still treated as the enemy, or at best as pests to control. We are definitely written off by society, but more than anything by the medical profession itself, which somehow has zero obligations to do anything here.

"Our societal bias...is playing out right now in how we understand and discuss #LongCovid, and as we have done in relation to #ME for decades. I think one of the main reasons for why we are no further in finding a cure for those conditions is that so many don’t believe that exercise can ever harm."

Sympathetic article in a Scottish local newspaper www.pressandjournal.co.uk/fp/politics/... “There’s plenty of cases where folk have done the graded exercise, and now they’re in wheelchairs,” #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

And please also, AGAIN, never forget that they are inherently unethical to use because no one gave permission for their research or writing to be used in it. It is all stolen, and if you're using the plagiarism machine, please keep that in mind.

This is WILD. Power goes out in San Francisco and the robot cars, needing the lights to "self" drive, all stop at once, blocking streets and emergency vehicles - which are needed more than ever in a black out! We knew AI causes power outages. Turns out it also makes them worse by being stupid.

(I'm just doing a clear out) This is the response from the (UK) ME/CFS charities Alliance to the infamous Royal Colleges report on CFS in 1996. Up to then things had seemed to be gradually improving before this heralded a period when CFS & GET sadly took over #MEcfs #CFS #PwME 1/

Great to be referred to as a 'blocker' to the taxpayer getting a home - although as that epiphet is regularly applied to wildlife, at least I'm in good company! The language being used by this government is deliberately divisive. Solidarity with bats, newts, swifts & disabled people everywhere!

Of all the sins of AI, this is an unexpected and deeply annoying one

I’m pissed that we’re all going to have a shitty 10-15 years economically because a dozen techboys believed that it was possible to write code to the point that the program could write better code and eventually either kill us all or make us immortal, and so they spent $1.5tn for $41bn in revenue

This is obscene. Why can't other politicians say that? The 25 richest families are collectively $358.7 billion richer than a year ago, with a combined fortune totaling $2.9 trillion.

Job links for those posts with our team: www.imperial.ac.uk/jobs/search-...

Come and join us at Imperial College to work a project looking at mechanisms in Long Covid and ME/CFS We're looking for: A keen, experienced Research Nurse A gifted molecular immunologist with a strong bioinformatics background www.imperial.ac.uk/.../descript.... www.imperial.ac.uk/.../descript....

1) Prof. Scheibenbogen announced that the biopharma company Sanofi is willing to support a drug trial on ME/CFS led by the Charité. Sanofi also expressed an interest in gaining a better understanding of the disease and its mechanisms.

Welcome to the UK where a right wing academic seeks to defend a man who wrote: 'Head for the hotels housing them and burn them to the ground.' By describing that incitement as "anti immigration"

1) This factsheet for medical professionals received a lot of response and discussion. Some people felt it was dismissive of several findings in the ME/CFS field, so I want to give some more background and context.

Saying you’re against GET and then recommending progressively increased exercise is way, way too common. Claiming that’s pacing doesn’t make is so!

Reminder, #MEcfs researchers: all consented data from @decodemestudy.bsky.social is available to researchers, including individual-level genotypes and symptom questionnaire responses institute-genetics-cancer.ed.ac.uk/decodeme-the... Summary stats & questionnaires available: osf.io/rgqs3/files/...

Anyone can become disabled. Anyone can become chronically ill. It’s not a choice. It’s not a moral failing. It’s not something you can “try harder” your way out of. You can be the healthiest person in the world & completely disabled in an instant. It’s a minority group you can join anytime.

Petition Call for Funding a New Clinical Study on Daratumumab for ME/CFS www.change.org/p/call-for-f... Screenshot from Science for ME weekly update #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

🎯post by @olivesiffleur.bsky.social on Twitter: "The greatest trick the devil ever pulled was convincing the world airborne viruses are spread by hands." OP: x.com/OliveSiffleu...

This study is really promising, and although it has gotten underway it has not yet raised the full amount it needs and could really do with government support.

The rhetoric about disabled people, trans people, Muslims, Immigrants, etc… is all part of the same bigotry. It’s all part of the same Fascist rhetoric & propaganda.

You aren't speaking to your dead grandmother. It's something else.

And in response to headlines like "there is no need for masks", here is the 1 minutes from my interview where I discuss basic preventative measures (including masks!). Also note that NHS stats like A&E and Ambulance waits are lower than same time 3 years ago, even with earlier flu wave.

1) New factsheet: ME/CFS - information for medical professionals (6 pages). Written by Prof. Emeritus Jonathon Edwards and members of the Science for ME forum. A valuable text, useful to bookmark. A couple of quotes from key paragraphs 👇

Please continue spreading this!! We need it to go viral. For the love of everything, if anything deserves to go viral it’s this ♥️

It's been cited 34 times. And I think it made it impossible for the Pace authors to continue with claims that CBT and grade exercise led to recovery.

9-year anniversary of reanalysis paper on recovery in £5m #PACEtrial, with data the PACE team fought so hard to keep to themselves. Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol tandfonline.com/doi/full/10.... #MEcfs #CFS

2) Interferon is one of the signalling proteins our immune system makes to respond to viruses. It's used as medicine for MS and hepatitis C where it causes extreme malaise and fatigue as a side effect. For this reason, it has always been of interest in conditions such as ME/CFS.

1) This interesting short paper showed that the immune cells of Long Covid patients had a stronger response to viral mimics than controls. They produced more type I interferon.

Nick Clegg says asking artists for use permission would ‘kill’ the AI industry

1) Oliver Sacks, the neurologist known for his detailed case studies, seems to have fabricated and lied in many of his publications. This includes famous books such as 'The Man Who Mistook His Wife for a Hat' and 'Awakenings' on patients with encephalitis lethargica.

And then there’s the story about Alex Karp’s not-at-all-weird interview (for lack of a better word) with Oswald Mosley’s grandson for a senior position at Palantir.

Absolutely ridiculous that you felt you had to resign when so many nasty, twisted people flourish at a much higher level in the BBC.

Very sad that I felt I had no choice but to resign from The Infinite Monkey Cage - a victory for the transphobes and other bigots - I did it because so much of the media has chosen to believe the kind and empathetic people are a fiction - they are real and so often unrepresented.

This will happen to people more and more and lead to terrible things

So, to those who say "masks don't work", cite the flawed Cochrane report, insist upon an unfeasible RCT, accuse folks of panic, and undermine public health on social and mainstream media during a flu/RSV epidemic... 1. Seasonal viruses may be "normal", but they do immense harm.

I supported the access to MAID, and extending it to those with non-terminal illnesses—because I believed there would be strong guardrails. I was utterly wrong. It’s quickly become a way to save the government money so there’s no incentive to provide strong oversight.

I erroneously believed that HCWs weren’t permitted to proactively suggest MAiD. I assumed the patient had to make the request. I went home and researched and sure enough - they are actually encouraged to bring it up. Not only in terminal patients - but in those with disabilities as well /4

The wait time for a consult was over a year - and I pointed out I didn’t think I could last a year given I was only 90lbs The reply? MAiD can be arranged in 3 months if the wait times are unacceptable I was so shocked & appalled that I lodged a complaint - only to be told they did nothing wrong /3

I was severely malnourished - something that often occurs in patients with EDS and/or MCAS. No matter how hard I tried - I couldn’t keep food down. I had lost a tremendous amount of weight and my albumin was so low that my legs were filled with fluid and “weeping” /2

I’m a disabled person living in Canada. My conditions are incurable - but there ARE treatments. I would be considered a “high cost health user” because I’m medically complex. The first time a doctor brought up assisted dying - it was in response to my requesting an expedited GI consult /1 🧵

Instead the UK dug into cultural masculinity that denied airborne transmission & collective responsibility. The toughness of presenteeism still dominates. This was and is driven by media nationalism. We know pandemics push societies to the right to avoid accountability & cost. /12