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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...

I guess that's part of moving health care decisions to local areas. I think the area covered by the Manchester mayor runs its own health decisons, and other areas are increasingly run by mayors with more devolution. And under that there are ICB's. I was never clear what NHS England's role was.

From those graphs, it looks like the treatment group had a significant change at 14 days that was gone by the later days. So a transient change in HRV that wore off fast. I wonder if something about the hope and trying to be well rested at the start of a new treatment affects HRV, and wears...

So they did a test of a treatment for dizziness and it made no difference to the dizziness. So a fail then. But instead they focus the conclusion on other things that did show some between group differences, and don't mention dizziness.

Yet another article getting the cause and effect the wrong way around. So judgemental and harmful. Do these people actually listen to patients, or do they just get them to fill in inappropriate questionnaires.

I am very pleased to see the IAG writing such comprehensive criticisms. Most of the points they make we have already made and been brushed away with scrappy little unsigned rejections. I hope Cochrane take more notice of the IAG.

This part of the letter to pwME seems to me to leave open a new possibility. That says to me that sometime soon after the last version of the protocol was submitted, some BPS people were allowed to see it, panicked, and decided to set up a competing review group to do an update and insist...