Search results

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...

He (Mr Robot) just got into a fight with a power cord so I had to go to his aid. Honestly even if he wasn’t picking up, he sweeps clouds of cat hair out from under the furniture!

New device - robot vacuum cleaner! I caved in to Black Friday promos and spent £60 on a robot hoover. It’s arrived and I’m having fun trying it out! I checked the reviews a lot, because this is at the cheap end of the market. There is a risk it stops holding its charge after a few months...

The people who have jobs which depend on it will spin it

A caution - It could also be an argument for the support, in that it’s not harmful (and will keep the many “multidisciplinary” OTs and Rehab Professors in employment…the catch is there is no long term follow up, is there? (I assume not. There never is) so it’s basically unproven long-term. I’m...

It’s kind of funny he was nominated for it and then even more funny he lost out on a technicality. It’s like a double insult. This thread title always makes me think of Nicky Graeme’s classic “ Who IS she? Meltdown in Big Brother (RIP)

Well as we have since found out, he misdiagnosed me and wrote about ME being over diagnosed because so many patients he saw didn’t have it. According to him. And yet I was in DecodeME.

People pay $200 per month but if you buy lifetime access now it is $349 - less than the cost of 2 months. Alternatively, it costs bugger all to run but I’d like a large cash injection, so I will over inflate the price, create a false economy sale and then make up some other offers in the...

You have to do scuba diving and 7 mile runs alongside the brain training, otherwise you will still have the Long Covid or whatever illness he’s nominating today. Gutted he had a whole science career where he never heard the saying “correlation is not causation”

I was pre- PEM as a symptom times.