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Good question @Sasha. I don’t know if we know the numbers of us out there. I have supported both of main charities in the past because I thought the guides were really useful (some of them) And I think it’s lack of faith in these charities. They both do some excellent work. But they also both...

Thanks so much for sharing all this information and detail @obeat! I feel inspired to try and write something for myself incase I have to stay at hospital as this is something everyone dreads maybe this would make a bad situation a little less stressful.

Same.

That’s brilliant @Trish Very helpful summary explainer to give to all the people who don’t understand what ME is and why it’s so difficult to manage.

What a tragedy. The people leaving their money to the charity maybe weren’t even aware of its failings.

I’ve just followed the link…. When people referred to “passports” for hospital I’ve been under the impression right up to a few seconds ago that this was more of a term of speech for having your personal needs down on a printable form with the added embarrassment of a charity logo on it. Not...

Well the man is a pro.

Oh really? I think I remember him telling us all how he was out zipping about on the tube and strutting around various London institutions early 2020 a few days after his own life changing brush with C-19 and whilst his wife lay in bed having hers. Did this involve a scarf?

Would a banner pointing people to the project be feasible? I don’t know anyone who’s completely happy with existing options either because these don’t cover all requirements (too long and good or short but vague etc) so it seems like something people would like to hear about.

That’s a great summary thanks @Sasha. Have people yet agreed to take the discussion private before asking people what they’d like to see under a particular topic in a member thread, is that consensus here or has that been agreed already privately? I’d like to see what other members especially...

Yep. One might think hospitals w’d try to get involved with some prevention policies under such conditions. One might think.

Yeah colder temperatures help the little life survive much longer along with the lettuce

= 62.778 degrees celsius. Oh dear.

Is this a potentially sympathetic piece or no?

Well tolerance is bad from a societal social perspective because of how people typically use it in everyday language. But it’s good and accurate from a medical perspective, in medical terminology.

I think having to crawl to people who’re making your life miserable is regrettable but we are where we are. I was thinking of something which gives an over view for someone with little time and little interest on what ME is and what it does to a person severely affected in the context of light...

That’s quite the indictment on the medical profession no? Annoy us and we’ll let you die a horrifically painful drawn out death. Petty tyrants one and most I guess. Still they do have form. People with ME merely existing and asking for their assistance seems enough to elicit this response all...

Yes. Quite.

In the treatment section could there be a way to convey and emphasise the point that although ME the condition itself has no validated treatment, that doesn’t equate to people with ME symptoms or diagnosis being untreatable patients. That symptoms reported by people with ME are likely to go...

As always you’re a mine of information I always enjoy :) I guess that’s what I mean though, every year a newspaper article tells us that alcohol doesn’t work yet we never learn this. So I think it’s fair to say leaving matters of public health up to a chance read by someone or other isn’t going...