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On the ME Association FB page (Public) in response to the Mirror article today, Trevor Hedley has made a good catch: “ Ellie Fry You really must write a book about this you have the passion, motive, talent and I suspect courage to do it.,another wonderful piece of work. Personally I would...

Ooops. Just seen it’s also shared up thread. Good enough to share twice!! LOL

This seems a good article to share in response. Why Dragon's Den's latest episode was so damaging It's caused backlash among the chronic illness community. By Hollie-Anne BrooksPUBLISHED: 19 JANUARY 2024...

Agree @Frith Jim Shannon is incredible. I’ve sat in his office (while waiting for my appointment with him) and seen what goes on. He’s a busy man, with time for everyone.

THIS!! Yes totally!

This is an interesting concept. I think everything I do is “managed” to make it possible. If I end up in an environment where I’m overstimulated (noise seems worst for me) I can quickly slide. Obviously, I want to leave that environment before I go wonky, cos I’d rather not be seen wonky in...

Part of ME (to me) is a complete inability to increase fitness at will. It’s almost a defining feature. Sure sometimes we can get lucky, and our level of disability can lessen, but that’s really not a choice open to us. I got lucky with a drug trial (either that or something else happened...

It’s interesting how we, the patients, have a mistaken view of our illness, but at the same time the view of ONE SINGLE patient should be taken as definitive because he cured himself! How does he not see that using his own n=1 experience as the clincher in his argument, puts doubt on his...

The description of ME for Chapter 51 does not bode well for the rest of it. Disgraceful approach.

With good reason! This is already later than anticipated. I was getting some deja-vu, after how things went with NG206.

Phew! I was getting worried.

It’s available on Amazon. I’ve pre-ordered a hard copy. :)

Delighted for Joan. A very well deserved award! :heart::heart::blush:

I sleep on my side. I have found Loop earplugs quite comfortable for night use. https://www.loopearplugs.com/products/quiet On Amazon https://www.amazon.co.uk/Loop-Quiet-Noise-Reduction-Earplugs/dp/B08MFDT65P/ A friend has found these mouldable silicon earplugs useful

I haven’t read it all yet, however - They don’t seem to mention that the 2007 guide was for CFS/ME and the new one for ME/CFS. That seems an important change to me. (& why do they add the dots in M.E./CFS? NICE didn’t)

Thank you for sharing that article. Very interesting. Though I wondered at first if it was a different national treasure that was useful for falling asleep. I personally have found David Attenborough’s autobiography, read by himself, both fascinating and absolutely sleep inducing. His voice...

New policies address paper mills and unprofessional conduct February 15, 2023 Author: Renee Hoch, Managing Editor of the PLOS Publication Ethics Team https://theplosblog.plos.org/2023/02/new-policies-address-paper-mills-and-unprofessional-conduct/

As an interesting spin off from my post above, it might be interesting to know at what time point after an intervention starts a patient is most likely to start to report issues with the intervention? I don’t really want to say “crashes”, or even “worsening” for this - perhaps it would be...

A longer CBT course might give patients time to realise that the therapy isn’t actually helping. Also, for a short term CBT course, patients may still be just below their “over threshold” point. Perhaps having used up all their buffer zone in the short timescale, and having made all the...

Apologies. The question seemed to relate to Jo’s post above the question I quoted - and that was talking about removing blood including plasma.