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Oh they're not the same? You learn something new every day. I'm embarrassed to admit that they were one of the first "researchers" I learnt about when I first got ill. In comparison, it took me about 3 months to find this forum... Says a lot about how the quacks pursue their marketing.

Do people who feel better after contracting a virus still get PEM during that period if they don't pace?

Agreed. It takes me forever to fall asleep, but I think that's because I'm inactive all day. Also, it's always taken me quite some time to fall asleep and ME/CFS just adds another hour. I don't think that really counts as sleep disturbance. I also wake up refreshed unless I have PEM that day.

I don't know. I can hoover, shower and prepare a simple meal and I'm definitely out of breath after hoovering - all without triggering PEM. However, walking to the neighbours to collect a parcel (maybe 50m return) triggers PEM regardless of heart rate and how slowly I walk. I wear a heart...

Year 1, 2, 3: I didn't know I was ill and I certainly wasn't disabled. Some tiredness at the end of each day that could be alleviated with a quick nap. I can't even pinpoint when it started. I didn't have PEM back then and wouldn't classify this as ME/CFS, but something was off thanks to covid...

Is DecodeME going to tell us who the likely culprit is?

What happened to the meeting minutes of the most recent meeting? They used to be published a few day later.

Same.

How do I get Berkeley to stop sending me those stupid "Please make another donation" letters? I've removed my address details from my account a couple of months ago and find this really obnoxious.

I had that for a few years and it's the reason why I don't know if my onset was caused by covid or the vaccine. Even when my symptoms started getting really bad, it took me a few months to realise that I hadn't become I'll out of the blue, but had been symptomatic for a while. It wasn't a...

I always feel as is I have mucus in my throat when PEM starts. And I think my voice has become weaker. Either way I have to limit myself to talking no more than 20 minutes at a time otherwise I get PEM. I keep telling people I have laryngitis because at least that's something they understand.

That depends on the job and can't be generalised I think. I had strict targets that were closely monitored by management in my early career whereas I had a lot of freedom and next to no meetings in senior positions.

Fair enough. I thought it was a sensory issue, but then again I'm not light sensitive so it's definitely the screen that messes with my brain. Almost like a concussion that doesn't heal maybe? What I meant is I don't think I have issues learning new skills or processing new information as long...

Out of interest, is it very common that mild/moderate pwME are in pain to some degree all the time? I guess it's hard to tell because symptoms seem to differ so widely and we don't have any good data.

I don't know if I get cognitive PEM because all my cognitive work takes place using a laptop. What I thought was cognitive PEM turned out to be screen intolerance and has nothing to do with cognitive activity. The only difference to physical PEM is that I get dizzy (not OI dizziness, but eyes...

What are the other aspects?

It requires a Bluesky account to view the post unfortunately.

Why wouldn't it be? It seems more and more likely that we have different subgroups regardless of trigger.

Which (blood) tests and biomarkers determine if someone falls into the 60% sub group?

I'm admittedly ignorant about clinical trials. It says it runs from 2022 until December 2026. Do we really have to wait another year for the results? I don't know how long recruitment takes and in what intervals they've received injections. I assume they do a follow up some time later to study...