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Before I became fully bedbound, my PEM was more typical, for maybe about 10 years - flu-ish feeling, like I was running a fever but with a normal temperature, crushing fatigue and brain fog, sore throat and headaches. Becoming bedbound was horrific - I'd never had dysautonomia symptoms before...

Thanks very much for your response, and the caution :)

Apologies, I should have linked to that tweet instead of just reporting my speculation! The post that livinglighter linked to is indeed the one I was referring to, and the impression about Todd's capacity at the moment was gleaned from scrolling through his posts about being too busy for certain...

Sorry, AFAB = Assigned Female At Birth A fair number of transfeminine people (i.e. those assigned male at birth) are also prescribed progesterone, but given the sex differences in incidence of CFS, I don't know that there are many who would be able to speak to this question. They do often take...

So exciting to hear, and especially the bit about including home visits for severe participants! I'm living in Naarm and hope I can keep an eye out for participant enrolment in this project - it doesn't look like there's anything up for it on La Trobe's website yet, understandably. Or would this...

There's some people (usually AFAB, I think) who report some improvement when taking progesterone, but I don't know if that's been studied. I'm a trans man (assigned female at birth, taking testosterone) and if testosterone affects my illness, it must take weeks or months because I've never been...

It sounds like he has the personal resources / inclination to call for a retraction in a casual Twitter thread, but not to do a proper write up and submission. For those who have attempted to correct shoddy research in the past - is it better for there to be more letters each covering a...

It seems like Todd has no intention of writing in, so perhaps someone else would be able to draw it to the attention of Nature (Communications), attributing appropriately?

Just to chime in as yet another person with very severe ME who finds all symptoms (e.g. muscle fasciculations, tinnitus, pain, fatigue, brain fog, diarrhoea) either reduce or completely disappear on a small dose of lorazepam (1mg). I take it occasionally for panic attacks, the cessation of my...

Thanks, @MEMarge It's been a shocking descent. I didn't get diagnosed until right before the rapid deterioration, and thought that I was just sluggish because of the pandemic. I write this from hospital, where I've been for over a month, where they don't know what to do with me, where I remain...

Ill for two years. 9 months - mild 9 months - moderate 3 months - fell off a cliff into very severe after trying to go back to work after a few months off.