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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.

Still not clear to me, sorry. I'll try an analogy. It's the problem of a sick baby or puppy that has an untreatable disease in the sense that they are the one suffering and who might benefit directly from research. But it's not the responsibility of that sick baby or puppy to fundraise and...

I haven't seen anyone here showing an attitude of 'it's not my problem'. I don't understand what point you are making.

If by illness community, you mean all the scattered individuals then I disagree. Thousands of sick people struggling to survive and get through their days should not be told by others that it's their responsibility to donate and fundraise. That's a cruel added burden for individuals to be asked...

We can't know that. As I said in an earlier post, most donating is done privately. I expect there are some who do both. I don't like sick people being criticised for the personal choices they make. It's none of my business what individuals choose to spend their money on.

But how do we know they don't? I don't like to criticise anyone for their choices of how they spend their money. Most donation is done privately. I am reluctant to go down the avenue of guilt tripping individuals into donating to research. People can be informed in a factual way of promising...

I think it may be significant that the emphasis on fatigue for diagnosis, sometimes as in the Oxford definition to the exclusion of all else being required for diagnosis, was a deliberate ploy of psychiatry to 'own' all fatiguing conditions of unknown cause. It allowed them to muddly the waters...

I haven't dived in with my usual half baked rapid response on this thread as I needed time to think about it and I'm not sure I have anything useful to add. I confess I read @Jonathan Edwards introduction and thought simply, well, yes, that's what I thought a syndrome was all along. So have I...

Easy money.

That's an interesting idea, Hutan. If they didn't charge a membership fee, they could recoup a lot of that by not publishing a paper version of their magazine and posting it out to all their members. They could just put it online. And online magazines have the added advantage of not needing to...