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What I'm trying to understand is if someone who needs the lie down after work, but can also increase their activity without crashing, are the getting PEM?

I do get that PEM is not just the delayed crash that puts people to bed in darkness and silence for weeks. A question on how you interpret prolonged. Someone who gets home from a half day at work, and has to lie down for an hour or two before getting dinner, and can do the same day after day...

Yes, sorry, I'm not having a nuance sort of day. :)

To be honest, I'd say, no let's not go down that road. It's the antithesis of what this forum is about. This forum was set up to get away from promotion of unevidenced anecdotal claims, and focus on scientific evidence. The internet is awash with people claiming all sorts of outlandish and...

The short answer is there aren't any. Some people who improve want to attribute their improvement to something they did, varying from positive thinking, brain training, acupuncture, pills and potions or resting a lot. Nothing proven and some of it carries risks of getting worse. The main thing...

The link doesn't work, @Denise.

Thanks, Peter. I think we could be in danger of making the description over complicated in order to try to include everybody and every possible permutation of ME/CFS and PEM. It may turn out that it's better to simplify it down to common factors, and leave the rest to be told through a variety...

No problem. I didn't find it ungracious. I share the same problems with podcasts and audiobooks. For one thing, I read fiction faster than an audiobook, and do quite a bit of skim reading in the boring bits and rereading bits. Listening to an actor or author plodding steadily through reading...

I agree it's important to include the possibility of variations from what is most commonly described as PEM. Your experience of being misled by the word 'usually' is important. Would it help if we changed it from 'usually' to 'often'?

There's also the problem that you keep having to take the book out of the holder completely or partly on order to turn the page. With an e reader it's easier as it's just a swipe or touch, but you only have a single small page at a time so you have to reach up more often. Ideally a hand held...

I solve the problem by listening to audiobooks and podcasts. If people are OK with sound, that's a useful option, though it costs money unless you have access to a library service. Most podcasts are free.

Can you lie on your side?

Apologies if my recent posts on this thread are a bit incoherent. I'm a bit befuddled by trying to do too much thinking at the moment.

Coming back to this, I find I want to question some assumptions and add some points: My point, and this is emphatically not based only on my own experience, is that the 'usual' increases in symptoms with any activity for pwME is at a certain level, and the 'unusual' increase in symptoms in PEM...

I had to look up LEMS: https://www.nhs.uk/conditions/lambert-eaton-myasthenic-syndrome/#:~:text=Lambert%2DEaton%20myasthenic%20syndrome%20(LEMS,syndrome%20or%20Eaton%2DLambert%20syndrome.

I just delete them without opening them. I have other sources of emails I don't want and haven't managed to stop. I just treat it as a daily small task to select all the unwanted ones and delete them as a batch. I guess you could mark them as spam, and eventually they would all go automatically...

I agree we shouldn't generalise from our own experience. I just gave one particular person's experience as an example. What I was trying and clearly not succeeding in saying was that PEM is a term created by clinicians listening to patients and discussing with other clinicians, and giving a...

I have been thinking about why it's very important that PEM is defined specifically as the usually delayed, and usually lasting more than a day, significant worsening of a person's MECFS that is triggered by exertion. I think it's vital it doesn't get conflated with all other worsening of...

I have just read that NHS England was only created in 2012. And all it did was create more levels of beaurocracy.

I am so impressed and grateful to Hilda and the IAG members for their letter and comment. I hope the people at Cochane who made the decisions over the last 2 years are feeling ashamed. Though I suspect they are are still in self righteous mode, given their rubbish and unsigned responses to...