Search results

This man's theories literally stole my life from me, and the lives of so many others. I was a writer before this and am now too sick to write anything about it. But if I had not been convinced to keep pushing after I worsened from mild I might have been able to be vocally critical of Wessley etc...

Yes it seems a very odd principle to stick to when so much is at stake imo. Like an honourable thing generally but in this situation incredibly frustrating. But I'm glad this UK study is going ahead and heartened they have already replicated the US results.

If Decode ME has a postive result, should we anticipate the Ponting decode long covid study being revived? Or a similar project

'We didn't look very hard for anything therefore there's nothing there, don't ask us to look harder just think better thoughts and get off the couch' I actually skimned most of this article before realising it was BPS. The dawning realisation was quite unpleasant. What is terrifying is how...

Encouraging, and something that definitely needed to be trialed but no control group and an 18month to two year study time is deeply frustrating, even with positive results there will need to be more studies and more studies before patients have any chance of getting their hands on the drug...

We're surrounded by feckless grifters in white coats

Deconditioning strikes after 5 years? This will really surprise my cardio who thought it could set in after a week on the couch with covid. I guess deconditioning is just whatever they want it to be. Honestly though this is really fucking dreadful. The promise of this study has been one of the...

Can anyone quote this thread for those of us not on the dreaded X/twitter

When I was mild I took ibuprofen almost daily to function, although that was when I already felt flu-ish.

I'm so sick of false hope, when will something pan out for us?

I am genuinely surprised yes. I've been following ME research closely for 3 years and I'm genuinely surprised. And gutted. Maybe it'll still be something of note but I doubt it now.

Oh Lord, if that really is true after all this time and all of this hope they've built up... Prusty eat your heart out! No honestly this is absolutely dreadful if true. And the no pre prints thing seems ludicrous now either way.

After seeing the disappointed responses online, I think it's still unwise to be hyping up a simple clinical trial like this when Ron Davis is portrayed as perpetually being on the verge of a significant breakthrough with his theory/drug candidates. I watched his is ME/CFS curable talk the other...

I was ready to curse the omfs name if they were indulging in a Prustyestque overhyping but this is genuinely good news! We've needed this sort of trial of both drugs for a long time.

I will DM you at some point then. Hope you feel better soon

You're welcome to message me with your experience if you'd rather.

I have looked into this drug and it's supposed to slow the effects of ALS not reverse it. Would it be doing similar here, i.e preventing deterioration, or would it be aiming to improve patients functioning?

Thank you. I apologise for derailing the conversation here. I have been in poor mental health, and should have heeded the trigger warning.

Thanks everybody!

I just struggle to accept that I asked for help so many times and was convinced I was physically ill in spite of them, and then my GP gaslit me and was convinced that I was depressed etc just once and excercised and now my life is destroyed forever and my partners (same infectious trigger...