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I don't know enough about EDS to judge any of this. All I know is that advocates, including physicians, find it a useful description. If it contains advice for dangerous surgery than that sounds like an easy fix that obviously should not have been there in the first place. If it means editing...

Taking the toolkit down using obviously nonsensical justifications. I understand it's controversial for some but this is a broken process shrouded in secrecy. It should be built upon, not thrown away as an hissy fit. I will defer to the medical professionals with EDS who were involved in this...

Haven't watched it yet. Will likely watch tonight. 16 minutes.

I think too much is made of the dangerous aspect. It is dangerous and cruel, but it's impossible to communicate that to people who don't have a clue what ME is. It will not resonate, unfortunately. We are faced with QAnon-level of delusional, nearly the same response: "what, you don't want to...

I don't know. Children usually have mastered object permanence. This is more at the toddler level, "if you don't test for it, you have zero cases".

When the description of the problem also includes the cause of the problem. Also not ironic at all, it's actually pathetic to insist that the problem is only a matter of how to make it work in practice, rather than a completely delusional set of assumptions lacking any evidence. What is this...

Almost like this is a systemic failure. Almost. But that's too much like what the chronic illness has been saying since... forever. And as we know from experience, to medicine the chronically ill are always wrong except when we comply with absurd demands. Who's going to win: a cruel system, the...

Medicine is way too political. Just a bunch of people being outraged that reality disagrees with their beliefs is enough to create a false controversy. What a dysfunctional mess. If they want better evidence then it should be built. This is a tantrum.

Fauci interviewed, small segment on Long Covid. Mentions extreme fatigue, muscle pain, temperature dysfunction (weird focus but OK autonomic dysfunction) and brain fog. Doesn't mention this has been known for decades, but that would look very bad so obviously people will be mum about it...

This only means their measurement of cognitive performance is inadequate. I can't say for the rest but this is a huge flaw and huge flaws are not very encouraging as to the validity of the rest of the study. Also why restrict to those two parts? Makes no sense to make such a decision without a...

Absolutely. I would estimate competent health care would cut total disease burden by 60-90%, meaning most of it, if not almost all of the total disease burden, is inflicted by neglect from health care services. Denial has consequences. It varies in time, by now it is 90%+, there has been no...

Yup. Exact same process as with us and "MUS" in general: deny/dismiss symptoms, "diagnose" with anxiety and/or depression, take note of all those symptoms that have no clear cause, BAM!, reassign all the previously dismissed symptoms to depression and/or anxiety, hence the mythical trope that...

I'm going to leave this here just in case I don't see it in my Youtube subscriptions, I will surely forget to look for it otherwise. Edit: it's up: https://www.s4me.info/threads/possibility-of-me-or-pvfs-after-covid-19-long-covid.14074/page-172#post-319428.

I thought it was pretty clear. The entire controversy had been whether or not infections were relevant. LC settles that debate. Still, the line about what could possibly cause it or whether it's real. The message is very clear to me.

'We know this is real': New clinics aid virus 'long-haulers' https://apnews.com/article/new-york-jamaica-coronavirus-pandemic-new-york-city-74bbc1b8433e936ba6a31c25d5f36873 In case anyone has any envy about what the LC clinics have to offer: At the Jamaica Hospital program, patients get...

Non-answer. What even is a "primary diagnosis"? That's not a real thing.

It would have been a bit too obvious to call it the POTEMKIN trial but frankly it doesn't make much of a difference. Of course it 100% was a show trial. NICE had put into practice the very same treatment model the very same year PACE started, it would have embarrassed too many people had it...

Very strong correlation with age. Tight standard deviation. The 70+ is interesting, probably because at this point standard tools lose much of their relevance in a population that already has significant disability.

Thread about the Long Covid clinics. Spoiler: yiiish.