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Oh I wasn’t sure if it was the same because the web address is S4ME! It’s good we were included (and there isn’t an imposter group with a similar name, which is what worried me) ETA that’s why we have a committee!

Who is Science for ME listed as signatory?

I thought #thereforME were asking for research ideas on their sub stack, I forget which thread it was. They said they had MPs in their audience I think.

There are benefits to it being regulated, beyond protecting people with ME. Personally I’ve had more harm done by Psychiatrists, employed in the NHS. But at least I wasn’t paying them. Any psychologist registered with BACP or the UKAP and offering therapy to cure ME should be reported.

Mine is £40-50 for 50 mins which isn’t uncommon as a price point.

The difference is I’m not recommending her to others, and she treated me when I was suicidal and due to other trauma, not ME/CFS.

I know she’s very good because I’m still alive. She doesn’t deal with anything much ME/CFS related, although it imposes limits and causes frustrations so it’s part of the discussions.

Biopsychosaurus works for me, as does “first, do no harm”

I really think they’re best ignored, they can shout into the void because hardly anyone is buying it. We are not “stopping people getting well” people are well able to hear about GET, LP, Brain-training App (I forget what it’s called) just as they are also able to read NICE guidance and NHS...

My psychotherapist is very good, I’ve had some who were not. I’m certainly not paying anything like £120 per hour. I do think it should be a protected title, if only to knock the “human givens psychotherapists” out of the field.

Nobody gets silenced as much as the privileged establishment do, when people disagree with them!

I think it was surprising when he popped up in the news talking about going on holiday to the Caribbean to Scuba Dive and had caught Dengue Fever.

And I absolutely think a timeline of his press statements, looking for any contradictions, is reasonable

I do remember him, not necessarily a hero but he absolutely used his platform to say that the ME community has been dealing with this and been ignored or some such. The Guardian article I posted before ends with him saying doctors must listen to patients, especially women who have been dismissed...

I think they’re speaking to a journalist about how what he was doing in real life was different to the story he gave in the press. Which is something widely discussed at the time locally, as he was publicly doing lots of exercise.

https://www.theguardian.com/commentisfree/2021/jun/10/long-covid-hope-recovery-symptoms

Yes I know people who saw him exercising regularly, in public, around July onwards. He was doing more than 5k. When did he go scuba diving and catch Dengue fever? October?

Yeah it’s not funny. Her adult daughter died in a similar manner just a few years later. I like an edgy joke but there’s a situation and a time for them.

Sometimes I know the thing I need to think of is “over there” in my brain, but I can’t get to it. More like a frosted glass screen has come down, so Ican see the “fog” analogy but it’s infantile. edit spelling

Erm, Whitney Houston died by drowning, with signs of heart disease and cocaine in her system. It doesn’t make me think the book will be a “good time” it makes me think the author is an indelicate putz. Ha ha Whitney drowned but this Whitney is a fish lol. Edit - I’ve read the write up “teaser”...