Search results

Thank you so much for all your work on this. It’s so validating.

She did make a feature film in 2019, Emma, in which she had a dialogue heavy part. Selective memory?

Audio version of the delivery plan:

The community note tagged onto the Guardian piece on Twitter has now disappeared. Anyone any idea how or why?

Does anyone know who is in the PAG? . It seems to be very hard to find out.

Wonder if you are able to enlarge on this. Who attended and the form and general purpose of the meeting. Was it seen to be the first of many primarily to obtain funding?

Adding my voice to the appreciation of your work Keith. Thank you for hanging in with us ME people, many desert us and we badly need academic research of a high standard now. I think a YouTube channel is a good idea as you suggested on Twitter.

This is way beyond my scientific capacity but I wondered if this could be related to the micro-blood-clots currently being treated in Germany, mainly on LongCovid patients though I gather a few ME patients have been successfully treated there?

It could be good timing news cycle wise. Avoiding the Budget and COP26 next week, we might get some decent coverage.

‘It was professor Findlay who told me not to join any charity groups or attend any support groups or look up my illness on the internet!!!!! Why would he want to be a patron?’ The above was posted on the ME Association thread on Twitter. It seems to sum the situation up perfectly. The arrogance...

I saw a couple of these sessions. I would term them ‘coaching’ as they bore little resemblance to true therapy. He intervenes constantly as ‘the one who knows’. Disturbing.

Just seen this on Twitter…2.30pm Could be important, it’s from a reliable source. I know we’re all exhausted but maybe it’s worth a shot? “NICE have asked for at least 50 case studies from people who’ve been harmed by Graded Exercise Therapy. They need them today.”

Sadly the advice on the NHS website will continue to be damaging and out of date. I gather it won’t be changed until the new guidelines are published.

My cancer surgeon, who was very sympathetic to ME, said simply, “no one knows where to start”. I think this is true. It’s hard for researchers to find a way in with the absence of any sort of reliable biomarker.

Thank you so much to everyone involved. It’s wonderful and much needed good news. I see that loads and loads of people are signing up.

I can't see the stream and I left the organisation in disgust several years ago, however I did respond to one of their tweets today in this way, 'I understand your dilemma (that of validating experience and offering hope!!) as someone severely ill for 28 years and a daughter ill for even longer...

Excellent letter, thank you. Please add my name:- Carole Bruce, one time psychotherapist. Now long-term severe ME patient.

Very good indeed. Thank you.