Search results

Worth noting tDCS (what they used) is significantly different to taVNS (trans auricular Vagus Nerve Stimulation), which is what is sometimes proposed (without good evidence) for ME and Post COVID. Agree on both points! Kudos to the authors for stating the obvious. Because unfortunately that...

I’ve never supplemented vit d with the goal of improving me/cfs. Just with the goal of supplying adequate levels to my body since i dont get sunshine and try to protect against Ostheoperosis. I don’t think this changes anything for those like me?

I don’t think Long COVID is one illness. Just an umbrella term for various sequelae of COVID from Lung Damage to OI. If you’re saying post-viral syndrome without PEM can “progress” to with PEM -> ME/CFS yeah I totally agree. Many people have repeated that anecdotally, including you IIRC.

I don’t conceive myself as being bedridden by symptoms. While I think you do. Hence our different views. My experience leads me to conceive myself as bedridden because of the fact my “threshold” to trigger PEM is so low I couldn’t leave my bed without triggering it. And the key part of PEM...

Anecdotally for me the training caused me to go from exercising 3 times a week walking 10’000 steps a day to being bedridden. But I cannot prove causality and I dont think we will be able to know for sure until we figure out a way to quantify the biology. But I think there is strong anecdotal...

I’d say pain is a relatively minor part of my illness. But it is really unexplained for me. I’m talking random joint pain in a toe that never comes back again. Random throbbing pain on my shin for no reason. (I’m bedridden and dont walk). The modalities of pain do seem very diverse in ME/CFS.

Especially considering Long COVID probably includes majoritarily people who don’t have PEM.

Chloé de Canson writes some absolutely great philosophy related blog pieces and posts related Disability, ME/CFS, Post-COVID etc. It’s been a pleasure reading their blog. I’m afraid they’re largely missing the point with relation to trial methodology here, though. They get the problem of...

A step towards finding easier false positives to make bank off of? (Or keep investor money flowing)?

I don’t think it will be if the drug is found to work? We just aren’t at that stage yet.

I had that for like a month and a half after my main triggering event. But it was more due to stomach upset than low appetite I think. Tho a bit of both probably they often come together. definitely ate very little, maybe only like 50-60% of what I did beforehand.

mild / very mild people probably could. Compared to popular conception in most cases the vast majority of time was spent gathering / processing, not hunting. One variable I guess would be how often, how far, the society migrates. Very nomadic would probably be a nightmare for pwME no matter how...

Sian O’Leary who left her position at the WMEA is gonna work for PRIME I’ve heard. Really glad to hear she’ll be continuing to work on ME/CFS.

Still not sure I’d fully trust them. Ie. But I do agree she seems far better than the average.

funny how the FPÖ has been at best silent or at worst straight up denialist and awful about long COVID and ME/CFS. Yet they make so much noise about this. Shows that they don’t actually care about anyone. Sick people just pawns in their political games, where they’ll cherrypick evidence to...

My worry, is that it just masks symptoms/PEM which allows you to do more, hence the very common “poop out” experience. I know atleast for me I would have trouble telling between a short term improvement and a masking of pem/symptoms.

I’ve heard that one before! For the 57th time, claims of a biomarker being found are being made prematurely. Experts caution the odds that “57th time’s the charm”, are self explanatory.

why neoliberalism? I mean it demonises welfare/dependence, focuses on personal responsibility, the individual/freedom, shys away from analysing systemic problems and sees them more as individuals failings, has a deeply entrenched healthist view that health is in large part a reflection of...

Neoliberal-capitalism has a lot in common with liberal-progressivism. Perhaps more so than eugenic fascism. I mean liberalism itself is founded on a sort of capitalist market + progressive on social issues -> social liberalism. Both share a sort of individualism inherent to the liberal view. And...