I've received an 'exclusive' invite to try Nature's new 'research assistant', which will burn down a forest to provide a 'summary of the paper' I'm reading and I have SUCH exciting news for them, that's called an 'abstract' and the actual authors already wrote it for me, no forest-burning required.

After the sun came up, the fog rolled in. Chilly, but lovely morning on the lake that I thought I'd share a moment from. You can hear a raven calling from the shore.

Yes. I try to remind myself that it’s an incredibly unnatural, counterintuitive and almost impossible thing to do. And even if you do it “perfectly” sometimes you’ll get worse anyway. The only reason it’s worth trying (which it is) is that all the other options and “treatments” suck so bad. #ME/CFS

Tired minds, normal scores: rethinking cognitive fatigue in multiple sclerosis www.frontiersin.org/journals/neu... Screenshot from the Science for ME weekly update #MultipleSclerosis #MS

Medical Republic: “Reinfection doubles kids’ risk of long covid” ‘Repeat infections in children and adolescents are linked to a rise in long-term complications, including heart and respiratory problems.’ www.medicalrepublic.com.au/reinfection-...

Keeping children, young people and their educators safe at school was an obstacle that should have been taken seriously - and still needs addressing. Clean air - Ventilation, Monitoring and Filtration all still needed along with guidance on when and how to use each. #CovidInquiry #LongCovidKids

Other evidence doesn’t support this. The belief was that this was a respiratory virus and the focus was on the acute disease, not morbidity. Research is only now beginning to unpick which children and young people are really at risk of #LongCovid #CovidInquiry

Gavin Williamson assessment on “obstacles” to kids returning to schools in January 2021 - I didn’t think it was justified - Covid wasn’t going to have an impact on children’s health - we had good understanding on which were vulnerable to covid. #LongCovidKids #CovidInquiry

& because NHS staff have had NO TRAINING. They revert to SOPs (Standard Operating Procedures) which is precisely how #ME px are put at risk by NHS provision. Everyone relies on A&E, whether privately insured or not. There is nowhere to go that is safe for anyone with #ME in the UK. Justice4ME.uk

The thread on one page: skywriter.blue/pages/did:pl...

On the one hand, medical science is beginning to get a handle on the very complex physiological basis of this disease. On the other hand, we can expect the greatest medical scandal (so far) of the 21st Century – the mass mistreatment and neglect of ME/CFS sufferers – to continue.

This commission points to where the government is heading. If the problem is “overdiagnosis” – which appears to be its foregone conclusion – then large numbers of people with horrendous conditions will be put through an even more punishing regime of tests and obstacles to qualify for benefits.

To rub salt into their wounds, these patients have watched as the man many see as their tormentor-in-chief has been garlanded with honours, including a knighthood. His latest appointment is yet another blow.

Many patients have been forced into useless and sometimes dangerous “buck up” treatments such as Graded Exercise Therapy and CBT, in some cases long after these “treatments” have been debunked. The most eminent advocate of these treatments? Professor Sir Simon Wesseley.

They desperately want to be able to work, to socialise, to experience all the other joys of life. But because the condition is so poorly understood, they have been repeatedly treated as if they were “malingerers” or “hysterics”. Which suits the government just fine.

In the firing line, as ever, are the UK’s hundreds of thousands of ME/CFS patients. As a practitioner once remarked, “the bastards don’t want to get better”. If there is one characteristic all the ME/CFS patients I’ve come across have in common, it is a desperation to get better.

Like the Tories, the Labour government is trying to drive down the number of people who qualify for disability benefits by insisting there has been an epidemic of “overdiagnosis”: a favourite theme of the BBC and the junktanks of Tufton Street. Never mind the science: what outcome do we want?

Just as we are beginning to understand the biochemical basis of this horrendous condition, the government appoints the man perhaps most responsible for the mischaracterisation of ME/CFS – Simon Wesseley - to its *overdiagnosis* commission. www.benefitsandwork.co.uk/news/controv...

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...

Mike Harley is a marathon running machine, raising funds for ME research. £52,000 and counting! @mikeseumarathons.bsky.social #MECFS #LongCovid #pwME

Simon Wessely — the controversial psychiatrist once dubbed “Britain’s most hated doctor” has been appointed vice chair of Labour’s review into overdiagnosis of mental health and neurodivergence. www.benefitsandwork.co.uk/news/controv...

A 'mum whose daughter has struggled for years with the effects of Covid is inviting SNP health secretary Neil Gray to hear her story in person at their home' “Her room is like a hospital. She’s very sick and that’s what I want him to see.” @helen-goss.bsky.social bit.ly/3IJ3PZY #LongCovidKids

Perhaps qualifies as a tip? I never walk very far (mainly within my house) but to try to prevent myself slipping into anaerobic exercise mode, I try to stop myself moving for a few seconds a few times along the way. My natural inclination is to move faster than is probably good for me. #MEcfs #PwME

🧵 "The Trouble With Recovery Stories" by Naomi Whittingham @naomiwhitt.bsky.social (with severe ME for decades) alifehidden.com/2024/11/05/r... An excellent, articulate article discussing “Recovery Stories” and the complex impressions and impacts they bring about #MEcfs #CFS #PwME 1/

'Approaches that work for many.. based on.. how brain, thoughts, feelings & activities interact.. relating stressors to brain-generated danger signals.. shown to be effective for people with #LongCovid' This belief ignores 5 1/2 years of Long/Covid research. www.theguardian.com/world/2025/o...

I see discredited Prof Paul Garner et al yet again barging into Guardian Letters on a tragic #Lymes story - why do @theguardian.com keep publishing their anti-science bullshit? They'll never miss any inappropriate opportunity to leverage in their weird BPS beliefs on #LongCovid #MECFS. Link below

From the September 2025 Chronic Living @chronicliving123.bsky.social Therapy newsletter Open Letter to the British Association of Counselling & Psychotherapy (BACP) magazine by @lammasleaves.bsky.social et al chroniclivingtherapy.com/open-letter-... #MyalgicEncephalomyelitis #MEcfs #CFS #PwME

From ME Research UK: A team of researchers in Hamburg set out to answer the following question “What is known about the global health, social and economic burden of ME/CFS?”. Read about the study findings here: tinyurl.com/ybdyeu54 #MEcfs #CFS #PwME

I have #ME, know 100s #pwME, many the direct subject of this NHS training module. FOUR senior Health Care Workers within my family network: *None even aware the training exists* Most treat #pwME for co-morbidities. ‘Access denied’ is evidence of NHS confidence in the quality of this hidden training.

1) A major genetic study on fibromyalgia just came out with DNA samples from 50.000 patients and 2.5 million controls. Most of the hits point to the brain and several implicated genes (RABGAP1L, OLFM4, DCC) were also found in the DecodeME study on ME/CFS.

“Placebo was considered more effective for functional than non-functional disorders by healthcare professionals, but not by patients” Interesting. Gives information on how professionals view functional disorders. I believe a FND diagnosis => Find New Doctor 1/

Sounds promising. (So long as they don’t go the graded exercise /psychology route)

The watcher. One of a pack of coyotes I met the other morning while out on the kayak. This one kept a close eye on me from it perch on the cliffs. #mammals 🌿

Worth reading and supporting this article on Violet Affleck’s advocacy for clean air and COVID mitigations. We should always support our youth when they step up and want to engage in making the world a better place. www.elle.com/culture/cele...

Monthly newsletter from Chronic Living Therapy getting sent out to subscribers in the next four or five days - be great to have you on the mailing list! ✒️ sign up on this page: chroniclivingtherapy.com/get-in-touch/

ME (aka #ME/CFS) - is a serious, chronic, systemic and highly neglected physical NCD affecting an estimated 240 million people - deserves urgent global attention having remains woefully under-recognised for far too long. Despite its severe and disabling nature, ME is often hidden under vague

" @thesicktimes.org spoke with twelve people who went to rehabilitation clinics in Germany...patients feel pressured to partake in exercise-based therapies that can make their disease worse." thesicktimes.org/2025/09/16/g... Screenshot from Science for ME weekly update #LongCovid #MEcfs

The Guardian: 'Long Covid linked to heavier periods and risk of iron deficiency' 'Survey of 12,000 women also revealed severity of long Covid symptoms rose and fell across menstrual cycle' www.theguardian.com/society/2025...

I am one of those GPs currently ‚lost‘ to the NHS, due to #LongCovid. How many of us are there? Nobody knows, because nobody is asking the question and gathering the data (I have approached the RCGP trying to find out - they couldn’t tell me). www.theguardian.com/society/2025...

‚It is an appalling failure of research, fact checking and editorial supervision that an otherwise informative and necessary piece about the experiences people with chronic health conditions has misled readers in such crucial ways and perpetuated these damaging myths.‘ #ME

Thank you so much to everyone w/ME/CFS and our families, docs, researchers for taking this—evidently already 800 people!! Esp grateful for everyone’s time as it turns out it’s often taking more like half an hour. So appreciate everyone‘s effort to move the field forward. Will stay open ~a month!

We are very happy to have signed this letter and fully support this Chronic Living Therapy campaign. chroniclivingtherapy.com/open-letter-... #pwME

From 2022 but I suspect many people are like me & missed there was an update for this highly praised resource (see some reviews here www.severeme.info/reviews/ ). Image from Action for ME members' magazine #SevereME #MyalgicEncephalomyelitis #MEcfs #CFS #PwME @naomiwhitt.bsky.social

This is PRECISELY why ME has to be universally recognised as a physical illness, so doctors can do justice to the patient in front of them - this letter shows EXACTLY how, by blurring the issue (mind/body blabla), we can do justice neither to a person’s physical nor their mental health.

THIS exactly. The mental health ''help'' at my local hospital wanted me to go to an unmasked group with no air filter, at a time when the vast majority of ppl with ''moderate'' M.E. were still self-isolating...

Interesting correspondence from the latest newsletter from the latest Action for ME members' magazine: "Mental health treatment when you have ME" #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

📣 We are supporting the #SaveOurChildrensRights campaign urging the government to protect children's legal rights for SEND support. 💙 EHCPs are a vital support for kids with #LongCovid The parliamentary debate is TODAY at 4.30! petition.parliament.uk/petitions/71...

📢 Children and Young People Voices report about their pandemic experiences has been released today. We would be interested in hearing your views. There is a chapter on Clinically Vulnerable families. We have included screenshots below... 1/

🙏Thank you to Chronic Living Therapy for writing this important open letter to BACP about their article about gaslighting that included controversial: 👉 mind-body therapies 👉 trauma based theory 👉 neuroplasticity LCA have co-signed 📃👇 chroniclivingtherapy.com/open-letter-...

🧵 A group of therapists, counsellors, psychologists (of various kinds and backgrounds) and advocates signed this Letter to the Ed of Therapy Today (the members' magazine of the BACP - UK's main professional organisation for counsellors and psychotherapists). It concerns an article on...