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I had the CBT of old, as an accompaniment to GET, the CbT was telling you to do GET. So basically I used to just lie because I thought it was nonsense, unscientific and unhelpful. “Why yes, I did walk an extra 5 minutes per day and I do feel better for pushing through!”

I have fatigue and fatiguability, but I agree with your point “stamina” which is how I usually explain limitations to others “I wouldn’t have the stamina to chop and cook carrots/I don’t have the stamina to go outside every day” etc

I don’t have any science behind my belief, just that I feel my energy is more consistent, and so I can do more, but I also can easily overdo it as the usual signals like hunger, dizziness don’t come. I still very clearly have ME, just “better managed”. I also sleep a lot more on the Mounjaro on...

Exciting!!!!

Neuroticism is prevalent in ME, ME, Parkinson’s…seems is a risk factor for fatigue. Really? Am I understanding neuroticism correctly? Is there a meaning beyond the popular one?

Does this book aim to induce fatigue in the reader, desperately searching for a definition, coherence and dare I say “the point”?

I get “fake flu” it feels like flu and I feel like I have a temperature but I don’t, I’m always still 36.2 maybe 36.3

And she is peddling this nonsense as a Dr of Neurology at “The Cheltenham Literature Festival”, promoting her populist book? I am imploded from the irony. She should stop making sub-sixth form hot take books and courting the press her whole personality, and go and do some medical treatment on...

She seems to be the only known member.

Love that for him. I really think if everyone leaves him to it, he will put people off eventually. He’s not engaging. Like those religious groups who put a speaker in the town centre or near a train station, wearing a sandwich board and handing out leaflets about religion or the world ending...

Has anyone contacted Sarah Boothby to ask? She is on Bluesky.

Wow thanks guys! I could really use it as well.

I get UC but I think I don’t qualify because my place has grade c rated energy efficiency and it has to be lower? Has that been removed now?

I don’t know if this will be universally helpful for pwME but I have a new item which I love. It’s called a caravan washing bowl, it cost £3.99. It’s a plastic washing up bowl on little legs, with a big plug in the middle. I think it was from BM bargains or Home Bargains. I can’t have a...

They leave one in whilst they add a second!

I just asked ChatGPT and it said the main points were around lack of diagnostic test, reframing ME/CFS from BPS to medical, lack of specialist services, lack of research, lack of assistance with benefits and social care. In summary it said UK and US patients all pretty much faced the same...

I honestly don’t know how they could get their foot lodged in the mouth so regularly. At this point they’re just trolling pwME

The cynic in me wonders whether it’s a weird recruitment drive for the members website. Why such fanfare that CS had input into a nothing article on an unknown webpage.

Over on Social Channels… The MEA proudly announced that Charles has given input/advice on an article. They have said to read the article you should “search the article name in the graphic” so they are promoting an article, their involvement, but not providing a link.So far, so annoying. The...

I also get a hormone rush - I assume that’s what it is, no idea really - usually during PMT for a few hours I feel like the Incredible Hulk, I really need to go for a run/long walk/clean the whole house, and I can. Feel able to undertake feats of strength, would have an go at lifting a car if...