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. Let me just say that I suffer as you. Slowly, inexorably I too, am running out of foods that I can tolerate, although I recognise a wrong un by a pain behind my right eye and a brain that gets lost in fog. I have been dismissed by doctors and seen nothing beyond the proclaimed efficacy of...

Jeez, that's depressing

A new NEM. Could that be why the LPers fancied chancing their arm again?

The BBC seems to be shining a little light on LC this morning. Radio 4s Today Program at 8.50am had another young woman talking about similar symptoms, although no mention of cold water swimming. This was followed by Sir Terence Stephenson of UCL announcing a research definition of Long Covid...

'The real me shining through M.E.': Visualizing masculinity and identity threat in men with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome using photovoice and IPA Staving off threatened masculinity with beer .. I like it , but it's been done before

I have tried this and thought it gave general improvement , until it didn't. Available via an American online pharmacy from India . Took about 3 weeks to the UK and cheaper than a private prescription, if I could get such a thing. Lots of stuff on the web about titration, dosage , etc. All...

Over the years relapses have been associated additional symptoms and increasing severity, with any subsequent remissions being slower and to a lower recovery ceiling. @Peter Trewhitt Pretty much sums up the course of my illness. Ever decreasing circles of existence

Ahh, I remember it well... The hot summer of 2018. I worked a physical 12 hour day in sweltering conditions. That night I thought I had heat stroke, but it was pem, my first time. We've been together ever since

A picture of my severity might be misinterpreted. Dark shades inside, headphones on, long greasy hair and raggedy beard... Goth rocker . Our diversity is not easily distilled and I would like to see that represented . Whilst I'd be happy never to see a picture of a vaguely attractive woman...

Gut microbiome seems quite du monde at present. The man who has been promoting the importance of gut microbiome for years is Ken Lassasen with his site "CFS Remission". Packed full of information and speculation on all things gut . I don't think Kefir did anything for me over the year I...

I received a diagnosis from a UK ME clinic of Severe ME and FM. Didn't seem unreasonable to me as the pain I suffered had a peculiar quality to it. Over time the FM receded but rears its ugly head when I suffer PEM

https://www.bbc.co.uk/news/health-57821848 Another blow to the "everything in your head" description of as yet not understood diseases.

I gave this a go last year with no discernable affect. Presumably the mice were given a subjective questionnaire which skewed the results in favour of the researchers, or should that be the business

Good day to help birthday boy help us by giving a donation. I really enjoy his evisceration of self serving dressed as science

Didn't find any evidence that anxiety or depression predict post infectious fatigue, such as ME either. It all seemed quite reasonable but she just couldn't help get that little barb in.

As severe myself, pem is ironically not as severe as it used to be. Nobody wants pem but I had a sense that I was circling the drain and terrified that over exertion would push me into it. An abundance of caution became the norm and my activity infringements are minor and so is my PEM.. I...

Britain's 2019 Eurovision song contest entry, featuring. Wim Hof and 2 popular "treatments" for ME, cold water and breathing. Take a break and marvel at its weirdness

There's a lot of this breathing around. Look at YouTube, TED talks etc. Cures everything , apparently. My favourite proponent is The Hof, another big beast is Dr Weir. I know pwME who do it everyday. I guess it gives them something to do and a sense of agency. As I am severe deep breathing...

Believe patients! Whatever next?

What is it about today and releasing the dumbest "research". Is it like certain times of year when film companies release their crappiest movies, between blockbusters. We aren't meant to read this stuff , they're just talking amongst themselves. There really are too many psychologists in the...