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I do in phases. A week or so of napping every day, then a week or two without. I certainly could not work though. Some of those info/scales of ME/CFS say “moderate” need to rest in the afternoon, some say nap. Many say moderate May need to use a wheelchair when out - I wouldn’t manage a...

Interesting, what exactly was the surgery (I cannot use the CPAP and am looking at other solutions now)

I take the phrase “unrefreshing sleep” to mean that we don’t get the same kind of reset that non-ME people do. I thought it meant that sleep doesn’t cure our fatigue. I do think it’s one of those ubiquitous phrases that gets trotted out everywhere and means different things to different people...

I’d like to do one of those TV jokester type of tricks, where we listed the endless ruminating and obsession with a disproved theory, magical thinking, gaslighting, paranoia etc to some big cheese like Simon Wessley and got them to diagnose it….then revealed it was BPS. Maybe Philomena Cunk is...

How hard is it to pull together a consultant, a few OTs and the Elaros app? /s These things don't just go to tender as a big shock, somebody somewhere has been preparing a bid.

Just added bib in second line

NHS palliative care is only a small part. I think there is an initiative to build new hospices in the future (maybe in the 10 year plan) however in the meantime Marie Curie have been closing down hospices. Many people reporting the “virtual hospice at home” being used and it’s not good. The...

Yup it’s institutional exclusion of people disabled byME/CFS

In the current times, it’s key that articles etc use “ME/CFS” for two reasons: -it’s the current standard term most widely used, and we are still trying to replace the “CFS” part that’s still in use, so they need linking And in relation to the above - it helps with SEO ME is a nightmare of a...

I’m not even reading it all, it’s too long. It’s a discussion that is inaccessable to me, due to my ME.

This. Can we have a thread. I don’t have the energy for the other stuff.

I absolutely had, which is why I am wondering why there is this interminable hand-wringing over whether physiotherapy as a discipline is wrong. So no I’m most certainly not behind but I am drained by the discussion of “the concept of physiotherapy is useless and does no good so needs to be...

It’s a bit hard to discuss the document when people want to abolish physiotherapy and physios per se more than deal with the real-world situation I find myself in, which is that -physiotherapy exists -I sometimes need to see physiotherapists - physiotherapists sometimes run ME/CFS clinics - some...

Sometimes pwME have a problem which requires physio though. I’m not sure how helpful it is to pick at things like -where the document acknowledges that physios usually follow a “reconditioning model” but this isn’t good for pwME - to pick at the existence or effectiveness of said...

Is anyone else getting fed up of bodily systems being sort-of anthropomorphised? Confused immune system? It’s not confused, it either functions or doesn’t.

I have no personality when I’m fatigued or in pain. It kills me to crack a smile, my brain can’t manufacture small talk, it cant even cope with tangential conversation, my voice is flat and starts to disappear. I expect there is some neurodiverse masking that I’m too exhausted to facilitate at...

Well I think steps, sleep, and heart rate would be a decent start. You would also have the advantage of the subject not knowing they were being monitored. And it would be interesting to survey how many pwME experienced a remission and whether it lasted or not.

I’m not sure 6 months of data will do it. But I do have 10 past years of data.

Some food for thought - I understand the desire to sort-of square the circle, but how about something the other way round? No, it’s not scientific, but we have a really engaged group of pwME who have been ill for years. Why not a survey of how it changed (or didn’t) over the years? I myself had...

I will say to you, I understand as I have been there, you are falling into a trap of writing/evidencing more. You need to instead keep stating what you’ve already said, say the same thing again and again - to all the different people. You will then be consistent and not tied up in volumes of...