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I had to reread the title like 4 times before the grammar made sense.

Though I think @rvallee points something interesting out. Disabling baseline fatigue, which is basically the essence of many older definitions of the illness, and still heavily heavily pushed in newer definitions like the IOM, seems not to be universal. In fact in this forum it seems about 50/50...

Also if you said to pre-ME me, “activity rationing”, I immediately understand. “activity pacing” sounds more like finding an efficient way to take breaks between activities while maximising the amount of activities.

same. feels like autonomic system is completely haywire

That’s the thing, no medical professional has been able to give me useful advice at all. It seems like we have no idea what this could be. I get symptoms really typical of allergic reactions, but immediately after overexerting (for me that might just mean sitting up for 30secs or hearing a...

Is anaphylaxis a worry when getting allergy like symptoms with ME/CFS? Like should I buy an epi pen? I’ve been told this is MCAS — but am aware there are issues w the MCAS clinical construct. H1 Blockers seem to have little effect so idk if it can really be histamine/mast cell related for me.

Couldn’t find a general thread for them so am creating one. Just wanted to share anecdotal bad experience on reddit I saw. Also here’s a link from a website that doesn’t track you (unlike reddit): https://redlib.r4fo.com/r/cfs/comments/1oejwdt/watch_out_with_corticosteroids_they_can_ruin_your/

I’ve decided to go for this one: Philips 600 series AC0651/10 Ill see how it goes.

Thanks for the helpful replies I’ll sleep on it and choose tomorrow. Goodnights :)

For me the “acceptance” came after I crashed into very severe in part from being pushed to go to tons of doctors appointments. So do be careful energy wise.

It depends. My choice is either just my room (but would have to be very silent I get pem so easily from noise, i cant even listen to people speak anymore) which is probably like < 15 m2. Or the whole floor which is maybe 30 m2. The two products I listed both had minimum sounds of around 20 db...

Another COVID exposure for family members. I’m too severe to get COVID, im barely keeping my ability to use my phone. Can someone who has more knowledge/energy than me tell me if this HEPA purifier looks good or not...

I’ve seen this happen w multiple people.

https://www.goodreads.com/book/show/241074533-psychology-s-quiet-conservatism Goodreads link for that aswell

I can’t talk for others. But I can’t speak because of PEM (which is part of my Post-COVID). But I “can” speak. Like my mouth still knows how to make the sounds. I don’t need to learn to speak again. I just need to not get debilitating PEM from speaking. So speech therapy for me would be...

Very likely, and has probably been the case for a while. They benefit from conflation of CBTs. From conflation of chronic fatigue and “CFS”, from conflation of PEM PESE and PEF, from conflation of Pacing and “pacing up” etc. I don’t know how conscious these conflations are. But the rhetorical...

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BTW it seems WMEA is working on a medical education hub. Perhaps S4ME factsheets could collaborate here?

Apparently she left. I don’t know the reasons. But I’m pretty sure it was her choice like she wasn’t made to.

I don’t think it’s ethical to allow high salaries for people who earnt a lot and probably have savings while many who werent so fortunate are literally going hungry. In the US I think you’re right SSI and SSDI are nominally different. I think in many other countries its the same system just...