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Ok well I have ME/CFS so this is meaningless, good work Trudie!

Lots of people should know lots of things but they, in practice, do not.

It’s the app trap. It’s added value, isn’t it? Building and supporting the community. Ethically approved research happening now, near you, you can click and sign up. Part of their offering alongside podcasts/blog posts etc.

Basically the same disclaimer. I know I Stan Visible but I really think they’re a bit….pollyanna. They are IT people with LC. They added a research feed feature, it pulls data from a dot gov website, that’s nice, what could possibly go wrong? I think this might be the first difficult...

The correlation (being overweight) is not necessarily causation for sleep apnoea or fibromyalgia. I still don’t meet the majority of the criteria (being male, neck size etc) however having FM, ME/CFS and OSA all untreated (save for GET CBT) can lead to weight gain. No, you are not allowed to...

I once drank a whole bottle of rosė schloer and felt a bit dizzy and guilty as I poured the last glass, I’d been really enjoying it and feeling relaxed. I then remembered that it isn’t wine, it’s just grown-up fizzy juice made to taste a bit like wine. My point being - if your brain recognises...

I was initially diagnosed with Fibromyalgia. Some decade later I started to decline with my undiagnosed Mild ME. I put on weight and a year later, became overweight, started megasnoring, reporting to the GP that it was loud enough to hear outside the building and I was observed stopping...

I could actually believe they didn’t realise the danger.

Ah it’s not a mirror-image of this site, with a forum where they can all hang out and discuss the many different scientific studies they’re going to do which will prove us wrong!

I thought we had a special guest who might have given us some answers. I just wanted to ask why he posted on Sarah Boothby’s Bluesky then failed to engage with her. It kind of seems like an awful appropriation of her daughters death to chase clout and promote his views, because he didn’t reply...

Leeds has not been accepting inpatients from outside of its area for some years now.

My reactions to a new soap, or micropore tape are much worse than any reactions to meds. Cant say Ive ever noticed any difference in reaction to meds since ME, I’ve not heard of it being a thing.

Thank you for telling your story as your story, and not claiming that you can cure us all.

Who is being offered a CPET? How many pwME have ever had to turn down the offer of a CPET? Many people with ME/CFS do not want to be pushed into brain training as they are afraid they will be encouraged into a long-lasting crash by it and that it won’t work, so it’s questionable ethically, if...

Not gonna lie “most of his friends are woman” is a contender for weirdest comment in a crowded field. I’m glad it’s the private networking groups the many Drs and recovered patients are using, saves them cluttering up the comments sections. The Revolutionary Communist Party used to drum it in...

I dunno why, “he” just is!?!? I’ve got some black sticky vinyl off cuts, he will be getting eyes soon.

He is OKP K5 model. It seems to be a Chinese brand. Even if it lasts a year it will be worth the cost (hopefully he lasts longer but you know how things are thesedays). He came with spare parts - two brushes and an extra HEPA filter. I’m allergic to the cat so it will help a lot.

Yeah, my GET and CBT only ever got me jogging about a mile, never got anywhere near 7! Then of course the slow decline starts, the increasingly frequent crashes, and 5-10 years later you’re unfit for any work. We really do need those long-term study follow ups.

I’m more interested to know why there are so many conflicting points in PG’s timeline where he was out doing seven mile runs yet claiming to be unwell. If we are looking into his particular case of brain retraining as an example of how well it works. Has his sister recovered from her ME/CFS...

I know him and I don’t like him. I’d be really conflicted if he had run DecodeME, but as he’s bimbling through untested brain training luckily I’ve not had a mismatch. Public Figures will always attract comment, and he’s very much a public figure. No need to worry about me, thanks. I know my...