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Perhaps students in this situation could be encouraged to share their learning process and review writing process here, so we can give feedback before it reaches publication stage. They could do it on a members only thread if they don't want to make their learning process public. We all want...

There's also a problem of local and national groups 'going rogue'. My local group which I haven't been involved with for years, used to employ a part time benefits advisor who would visit at home and help fill in forms and attend appeal tribunals in support. I can't remember their funding...

I think we need to avoid confusing two issues. Yes, it's accurate to say pwME experience brain fog. But no, that doesn't mean the cause of that brain fog is inflammation. We don't know the biological basis of brain fog. There is a risk if we go to the doctor and say we have brain inflammation...

Oh dear, I do hope it turns out not to be BPS, it's concerning that they won't reveal to you want the recommendations are yet. Well done for fighting on.

@Oni, this post from @obeat on another thread may be helpful for you. It seems very sensible to have a list of your specific needs in such brief and clear form to take with you to discuss with the staff...

I don't think the focus in this article is on the unhelpful beliefs aspect of PACE and other trials. I thought they were focusing on the fact that pwME who adhere to GET therapy very well still don't get fitter or stronger, unlike healthy people who follow similar regimes. So the reference to...

I find it refreshingly readable. I didn't notice the grammar.

There weren't any healthy controls in PACE. It was a trial of CBT, GET and Adaptive Pacing. The control group was people with only standard medical care. All participants were diagnosed with CFS using Oxford criteria (disabling fatigue), they were randomly allocated to the 4 groups.

Me too. Members might not believe this, given how much I post, but I quite often delete my long incoherent rambles without posting them.

I bought both a rollator and a cheap folding wheelchair on Amazon in the UK. I haven't used the rollator, as my ME worsened sufficiently that I need to be pushed in a wheelchair on the rare occasions I go out, and inside the house I can walk and use walls and doorways to steady me when needed. I...

Whatever explanation they come up with is likely to be based more on their preconceived ideas about pwME/LC rather than evidence, I suspect. It reminds me of BPS people who say we are both too scared to be active, and booming and busting. They don't see the contradiction, just their need to...

Interesting idea. Typing speed also depends on what I'm typing about. Factors affecting my typing speed and number of corrections I need to make include - fatiguablity - gets slower if I go on too long - both cognitive and physical. - what else I've done that week, day, hour and how close to...

Another study of mice being made to swim to exhaustion.

Thanks for sharing your experience, @Murph. I think your description demonstrates key points about attempting to increase exercise. In ME/CFS there are limits on how much exertion we can do without triggering PEM, however fit we are. But some people with mild ME/CFS may have sufficient...

Jaime Seltzer's very long thread on Bluesky is interesting. I haven't read it all yet, but whizzed through to the end where I read this: ‪It's ME(Jaime)‬ ‪@exceedhergrasp1.bsky.social‬ Worth saying my impressions at the end: There is still a STRONG push for behavioral studies from high w/in...

I don't see it that way. This research group led by Chris Armstrong has been researching ME/CFS biology for some years, and show a good understanding of the difficulities of finding the cause of ME/CFS. The social and behavioural bit puzzled me too. I'm hoping they simply mean that diagnosis...

I have had similar experience in my dim and distant past working life. We had one principal who set up a system for lowly lecturers like me to air our concerns, and, even if they didn't act much on them, I was listened to carefully and not penalised. Few if any others took part. Then we had...

That's fantastic, @Hoopoe. :hug:

Please don't let my definition rule anyone out, I was just attempting to summarise common features many people describe of PEM. There are likely to be significant variations, like shorter or longer times, rolling PEM making separate episodes indistinguishable and more. Since we don't know the...

I think you missed my point but I'll leave it there.