Hugo

This #severeMEday I ask that #pwME and allies, all year round, keep those most severe in mind when advocating for, speaking about or on behalf of the ME/CFS community, and listen to & amplify the voices of those with severe & very severe ME as much as possible

@KSchnickelfritz I was 22 years old at the time, it was probably worth it in my case I think

@KSchnickelfritz Purely personal anecdote but I had a tonsillectomy when I had mild ME and apart from several weeks post surgery it made no difference to my ME either way

Anyone have any knowledge on whether a tonsillectomy is a good or bad idea for an adolescent who may be more likely to get ME? Tonsils very enlarged and fill up with tonsil stones daily. Tonsillitis isn’t more than once a year, maybe less and doesn’t require abx every time.

@PneumaNeura @useless_priest Thanks

@mx__worldwide @useless_priest I think the study that showed 68% becoming permanently worse from a crash is as close as we have. Don’t have the study on hand though

Does anyone have a good source/s on how ME can become more severe from repeated PEM, and what this means in terms of functioning at the severe end? The more scientific/academic the better

Could be a source that just *mentions* this or even heavily alludes to it, it doesn't have to be the focus of the source

Just looking for a reasonably official source that states that repeated PEM can cause increased severity/ongoing deterioration + ideally that describes what this means for functioning at the more severe end. Doesn't have to be super in depth or cover biology of it Thanks ☺️

If you’re on jobseeker as a single the basic rate is 400 a week out of that rent, internet,water,electricity,food ,medicine, phone, transport all needs to be paid. We are just barely surviving

Scientific maybe not best word, just meant official published sources, or something official enough to be used as a citation. Very brain fogged atm

And "how" I just mean that state that it happens, doesn't have to be a scientific explanation of *how* it happens. Sorry trying to get a source asap while in PEM didn't do best job explaining

(in my SDA housing/extra support case, I'm already on the NDIS)

I think I need to make this point more clearly in my NDIS review proceedings

Ugh there was a helpful post on here a few days ago about a carer guide for severe M.E & PEM that I thought I bookmarked, but didn’t. Long shot, but does anyone else remember this post? 👀 I think there was a screenshot on how to interact w/severe patients during a PEM crash

Having your head shaved when you have bad hyperacusis is actually difficult because even the buzz of a shaver causes pain and swelling in your ears.

@AnilvanderZee They're going to just keep doing exercise/rehab studies on ME/CFS until they get a p-value < 0.05 by pure chance, aren't they?

@pzneedsrest Love them, got to see them when they came here back in my pre-ME days

Ok that's enough bad vibes. It's Saturday! No roller skating for me, but here's a bedbop. youtu.be/9S5lTgyfT2c?si…

Having some intense (very PEM-exacerbated) anxiety/panic tonight, just feel overwhelmed

@byowife I'm so sorry 😞 🫂 it's so unfair

brother’s wedding tomorrow. couldn’t manage to support my basic health needs that would’ve allowed me to drive to syd to just be there. also fuel $. only family wedding i was ever going to experience in my LIFE. i only wish i was missing it bc i was already dead. this is Too Much