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Thanks David. I'll let him know! You and I met once in Sheffield where you were doing a talk, I don't know if you remember. (Carol Binks and Peter Trewitt were both there.) It's a few years back, now. Then you met my youngest son Jonathan, in Leiden ... or was it the Hague??? ... where you...

Thank you so much for your prompt response. I think I will wait for more of your contributions and then send him a link to this thread. ... so please keep it coming!!

Hi. My son is an academic and now lives in the Netherlands. (Our family is from the UK.) He is involved in Human Rights Law. He often gets involved in heated conversations regarding research ethics. Well, he currently has some time on his hands. He has asked me if I know of any Dutch studies...

This was before my time, but here are some links from the ME Association regarding the ME/CFS service which was subsequently set up in Fife, Scotland. https://meassociation.org.uk/measpecialist/nhs-fife/...

Indeed.

... and there's THIS: Tess Falor apparently spoke briefly at the research collaborative conference #MECFS2023

Well, they've just managed to raise nearly £300k!

Indeed. Your pseudonym, 'Sly Saint' evidently describes you well :thumbup:

Yes. That doesn't surprise me. Early on in my disease, I lived in Fife in Scotland for a few years (3 decades ago) and even back then, the support for pwME was miles ahead. Dundee is just north of Fife. I think they had a viral outbreak in the region following which, many folk (including a...

"Nico Pretorius is an entrepreneur and engineer and the husband of Resia Pretorius and has a personal connection to this work."

Here's a thread on twitter from Nico Pretorius on the issue:

This a response from Nico Pretorius and Asad Khan to the above-mentioned paper: Critical Reflections on the Cochrane Review of Long Covid Research https://nicopretorius.substack.com/p/critical-reflections-on-the-cochrane

I have been having a fight with myself as to whether to post the following link. (Depicting ME/CFS with the respect it deserves is so important.) So I hope I'm not way of the mark in posting this bit of satire/humour here entitled, "Gaslight News" posted by the Chronic Illness Channel: Enjoy!

ME/CFS News has just pointed out that Alan Carson and Jon Stone are editors of the JNNP.

The truth of the matter is, that the letter of response from MEAction UK, although put together in a hurry, was very good. Indeed, it was TOO GOOD - Not just factually correct, but very raw. It would be hard for anyone neutral, after reading that, to side with the authors. I can see (from their...

I feel devastated. I hope this is a mistake: Having realised that the letter was printed twice, that they are remedying the mistake. If a corrected (single) version doesn't go back up, is there something we can do about this? For Pete's sake, this is the BMJ, a supposedly reputable journal...

Bang on the mark. I've never seen it put so clearly before. It's like when someone is addicted to a substance but realises they need to stop using. They have a sponsor or therapist to whom they become accountable, who supports their goal either to stay completely sober or reduce their use...

I think Charles Shepherd is wonderful. I don't know how he has managed to keep going during the bleakest years in the UK regarding ME/CFS. Seriously. He has put up with so much shit. He's been patronised by medics for years, who themselves got it totally wrong. The man deserves a medal! Much...

I hope it's ok to quote oneself! This comment has now disappeared from under article. What a strange world we live in.

Wow. This is a really good read. Thanks Robert. Although the thread does not come to a firm conclusion, I do feel better informed having read it :-)