Search results

I don't think that legions of sick and house or bedbound people should have to 'beware' when they read tweets from someone who is supposed to be a legitimate researcher. If Prusty has uncovered anything less than a smoking gun he has acted with callous disregard for patients.

Anyone else feel like they're being grifted? Oh no you don't get the whole biomarker yet even though that's exactly what I said a month ago you've got to wait... Why does everything with this bloody illness have to be a wind-up?

I quite agree that just a biomarker could be transformative. But deep down (and I know I'm not the worst off) I want to know I won't spent the rest of my life in this bed. I really don't like that prusty is making big claims about treatments and recovery before he has even unveiled his...

I really can't stress enough how much this announcement has messed me up mentally. I've not been this anxious since the NICE guideline furore. Really wish he'd waited til the conference, as I can't imagine I'm the only one who's been affected like this.

This is the first time I've felt genuine hope in two years. I hope prusty is really onto something here. I feel like if he was bullshitting at this point his reputation would be trashed? Edit: By Bullshitting I mean exaggerating somehow, I'm not meaning to suggest prusty is lying. And I am...

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