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Indeed. I also think that the author needs to remember how tenacious and smart (ie in comparison to most of the 'experts' who believe they can give 'tips' in their little courses) most with ME are at learning to function at a higher level than their illness actually should allow them to by...

:rofl::rofl::rofl::rofl:. Too true

And do they note who the 'Group Officers' are? and who the trustees are? I'm intrigued by the power-base on decisions

https://www.facebook.com/watch/live/?ref=notif&v=1035058573855146&notif_id=1663261575366605&notif_t=live_video I've only watched part as I'm doing it in sections. It's a lot of slides and talking. I've yet to get to the 'suggestions' bit where it is something I don't know as they are sensibly...

Worrying that the focus might be 'getting them there' and then job done - whereas the real focus at this point in long covid needs to be on monitoring those who do 'get there' over the course of 5yrs. Noone seems to be noting that homeworking and reduced hours meaning that someone isn't...

https://valerieeliotsmith.com/2022/09/06/ten-years-on-somewhere-towards-the-end/?fbclid=IwAR1_onwJIicMntsLf08tVaZ3zzOXcbm3NYOwTR8bI1UvQjk5sWp8fWkMreU I couldn't spot or haven't noticed this being mentioned since 6th Sept - please do point me to the right place and delete if I've somehow missed...

It's Foucault vs Hayek atm in these areas (it's sort of not whole subjects but the intersection of the specific part of a number of them) and is about neoliberalism. So tbf if it is in that are it will get them read by those who are into that. My biggest frustration is the not linking them to...

when you look at the definition of the word it says 'restore' which is even more specific. ie restore to normal health or normal life I think they know exactly what they are doing with using the terms rehab instead of adjustments or support. I think it is the usual minimise and pretend recovery...

Hmm for all of this mine is directly correlated to how exhausted and ill I am. They can blind with fuzz on the mechanisms of what is involved with working memory but really given that I might be great before I do something on a day I feel well, then it goes down with each exertion makes me...

Except that their conclusion in their abstract then says 'timely rehabilitation is important'. There is a big issue with how people are allowed to write such statements without evidence - if you couldn't read the results and conclude that to write a marketing statement accurately then you...

Agree. They did not have a ‘safety measure’ of ‘reporting harm or deterioration’ (a gross failure despite their claims there were) for what was a Guinea pig trial of ‘let’s try doing the most counterintuitive approach’ (given back then rest still was advised when people were ill). this equates...

Amazing insight - thanks for this!

This is where it is interesting to bring up the topic of what a 'good brainstorming group' would include. I think that I have an issue with those around me misinterpreting what is going on in my body with what they 'see' e.g. raging pain and spasms not being listless at all but quite actively...

I know a lot of people with ME over the years now (not thru ME groups etc but quite a number through working in a big org for example). Not one of them is type A. I do exactly understand what type A is though - in my day it was mostly talked about in connection with driving and getting stressed...

Agree with the second point, just watched it. She definitely seems like someone who has actually had/has ME and come out the other side of all the nonsense that surrounds it.

Brilliant. Just what we need to be out there as a foundational public information video,everywhere, as said by others.

That sounds familiar. I've just 'discovered' there is definitely a new level of recent years on the PEM front though (in severe), although I think I already knew it from 'holidays' and having to realise they weren't possible when moderate. If this extrapolates as people get more and more...

Yes! I think that this question/topic is onto something. It would be interesting to detail and categorise by severity and to hear the first-hand of those who have gone between these severities on how it varies. I've not been very severe, just severe which is bad enough I can see that is...

Indeed - one thing a half decent review should be able to flag is how even with so much craply done research that 'misses the point' of the illness there could be a better fact file of data if protocols for reporting were put in for ME. Turns out these are highly relevant as the 'total exertion'...

no one ever really explaining in these things: how can an app logically be of help to mental distress? So it can suggest try x or take a survey of symptoms but where is the’miracle extra bit’ that is offering support you’d think could make a difference particularly if it’s for hcw who might...