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If what you say is true we may as well all give up. No more campaigning, no more s4me. I can't face the future you keep describing. I suppose it is a possibility, but I feel that it's sort of the same as people who even ten years ago were throwing their hands up in despair about climate change...

This had better actually be something otherwise it's absolutely abhorrent to play with people's hopes this way. People like me can't cope with the rollercoaster of self promotion and let down. we need honesty not marketing

Indeed. I didn't try to GET myself until a sympathetic (as opposed to dismissive) GP said he believed me but convinced me my symptoms were probably related to depression. I know I'm a broken record on this but it utterly ruined my life. People like me are living monuments to the danger of...

I have my issues with Nath (where's the f**king intramural study?!!) but I genuinely think this was quite a noble thing to do. I wish more researchers would directly contradict bps ideology in this way.

I wrote a short book and a bunch of music and then I crashed for three years and never recovered Those stories do my head in and make me think of everything I left unfinished

When mild I essentially dosed up on ibuprofen daily for years, which masked the severity of my symptoms and led me to write the illness off as just repeated colds/infections

How likely do we think it is that as Black speculates, Wessely used his new position to block more funding for ME research? A lot of people were saying the position was merely symbolic when he was first appointed.

I know science takes time but they are really taking the piss at this point. People need this research to come out yesterday!

Thank you Jonathan, that's reassuring.

Anyone have any experience with Dr Stephen J Wroe in Ipswich? Been referred to him for extreme neurological symptoms I was getting in December. I am severe and would like to avoid the wasted trip if he is BPS.

Anyone got any experience of withdrawing from pregabalin? I have been on 75mg for anxiety morning and night (150 a day) for four years. I am now severe and think the medication might be causing me more brain fog and fatigue. Plus I am not sure it is of any benefit anymore. Conversely I am a...

Insane. An insult to everyone who has suffered and died because of Wessleys handling of ME. Bodes very ill for the future of me and LC in the UK

I had two jabs last year. Around the time of my second (sept 21) I was in a flare up from moving back into my house after months at my parents and overexerting after the move. Initially I felt I had had a normal reaction, but very sore arm at night and raindrop sensation on side as falling...

Actually, I know this isn't the place but if anyone knows of any orgs collecting stories like mine for use in attempting to change rules, improve care etc in the UK please do let me know, by PM if that's more appropriate. To be clear I technically never did GET, if that makes a difference.

I really struggle with anger and self blame over the situation, to say nothing of grief for the life I didn't have to lose. If I could write more I would tell my story in a public forum to counter this crap but alas I've probably reached my daily limit with these two posts

I had undiagnosed ME for three and a half years BEFORE I became convinced that the fatigue was partly psychological. I was convinced I was recovering when I was running and pushing myself to work full days (I am a writer and musician and didn't have to do it which makes it so much harder to...

My birthday is coming up and I'm wondering what you lot think the best charity would be to ask my loved ones to donate to - the ME association? Preferably one that funds biomed research.

What we need is physicians like this sticking their necks out and publically countering this narrative in the media and among their colleagues rather than worrying about the damage to their reputation.

Thank you. And I agree. More professionals need to challenge these narratives so the public can see it isn't a universal view.

My heart sank when I saw his name. Very disappointed in The Atlantic for publishing him. The worst thing is that every time I read something like this I start gaslighting myself.