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Nope, if I do a “lunch out with friends” thing we will reach a point where I have to leave “because I’m tired and deaf in one ear” it gets blocked like you say, my hearing is fine afterwards. I get it as immediate fatigue and it can happen in PEM too.

When I had to work, I had to get up. Sleep or no sleep. I used to have weeks where I’d come home and go to bed, get 8 hours then be up at 3am, ready to face the day! Or I’d be “tired and wired” getting up late and chugging coffee. I have been known to take the afternoon off because I couldn’t...

I don’t think there’s been any substantive research, does anyone know of any papers on Chronic Pain/Chronic Physical Diseases levels in ISIS? What about surveying Violent Offenders currently in jail, maybe they all have tendinitis or impacted wisdom teeth? Would mindfulness have prevented WWII/s

Luigi isn’t even particularly unpopular on the internet. Lots of people (in USA I think) think what he did was inevitable, there are so many stories of people not just being denied treatment, but quite obviously being led a merry dance, terms being changed, surgeons called out from starting an...

I had a look back and a lot of that thread is from when it was first set up. It’s developed since then and things might have changed. Personally I don’t like the “prescriptive” vibe some people have. Visible is a tool, it’s there if I need it, I can’t sweat the small stuff. It’s not my master...

Hi There is a visible thread but it’s not very active, I’ll have to look for it. Personally, I like Visible I find it user-friendly. You can do the morning check-in which gives you a score based on your HRV trend. Although, you don’t have to do this if you don’t want to. You can see on a...

Perhaps if anyone wishes to push back, they could ask for the source/references for the statements made within the film? If she has a PhD surely she has reference material? And if she doesn’t, that should give her a gentle hint, rather than a line-by-line criticism?

I tried the other week but the link didn’t work. Discord has a reputation for being a cesspit, but I guess like any board, it depends which part you frequent. Parts of Reddit are outrageous, other parts are very dull.

I’m sure they would offer discount for bulk purchases. Even if you didn’t much care for the app, you’d get a polar heart monitor.

I wonder what it costs? And how the cost compares to Visible* *I know not everyone is a fan of Visible but at least it’s based on some science and uses FUNCAP. It’s not likely to cause damage, or harm. If the NHS said they were offering one or the other, and neither isn’t an option, Visible is...

I wonder which charities are involved in the breakout sessions, apart from the MEA?I wonder whether ThereforME are able to attend?

Quite.

I guess it’s possible the MEA has recently produced a new clinical toolkit that isn’t the new clinical assessment toolkit Tyson spoke about with Russell Fleming of the MEA, at this event?

Found it on the MEA thread, oh but the quote within of the blurb hasnt transferred here

We had proof, it was the 5 Feb 2025 meeting blurb which linked the PROMS with the app, can’t find the screenshot just yet Edit- might have been on one of the other threads/moved. post was by cinders66...

My comment was in relation to discussing this matter with the MEA. They weren’t responsive regarding Trish’s letter about PROMS, I doubt Russell Fleming will reply to the @ here, better to leave them to it and speak to other organisations about this app.

We are now in a post-truth society, where NICE 206 guidelines 2021 have been issued - but largely ignored by the NHS and an Emeritus Professor of Epidemiology is campaigning against against all edged harm they’re causing. Honestly, it makes me feel like the neglected child ignored by the...

I disagree. We should forward groups like ME Action, There for ME, 25% et so they can be forewarned and have the heads up before they and their members have this sprung on them. The ME Association is a lost cause making themselves increasingly irrelevant.

They will sell it as “delivering more, with less” it will free up OTs to do proper work with people in clinics, whilst just replying to the odd question/pulling some stats off the app. I was told my local service receives funding for10% of the patients they see, hence all the online group...

I think we need to talk with people in relevant groups, some are on here aren’t they?