Search results

I was curious and mostly see no reaction at all, barely a handful so far. I imagine most of the conversation is in Facebook groups and the like, more private.

I'd say most of the blame is on BMJ for this. They lend their credibility to this, labelling it as opinion doesn't change that. Sure, they published his other texts, but Garner was not making strong claims, certainly not pushing his experience as something that should be generalized. He was...

On 2nd thought it's possible I mixed Greenhalgh here with, I think, Fiona Godlee. I really should stop relying on my memory. But she did publish an article gushing about a patient-led research institute and how important it is to listen to patients, a point she makes loudly with LC, so frankly...

NIH launches database to track neurological symptoms associated with COVID-19 https://www.ninds.nih.gov/News-Events/News-and-Press-Releases/Press-Releases/NIH-launches-COVID-19-Neuro-Databank A new database will collect information from clinicians about COVID-19-related neurological symptoms...

Well, duh. Who would even think such an absurd thing? It's not some evil spirit where if you know their name they can't hurt you. What is this nonsense? Why is medical research so excessively incompetent? Patient: is sick with cancer Doctor: you have cancer Patient: wow the disease is...

"Single-issue campaigners". Let's... shut down all cancer-related stuff because it's a single issue... issue? Why are cancer activists always talking about cancer cancer cancer?! When you don't have a real argument... And if her insulting indifference is being sympathetic... oof. She has...

It's even weirder than this: he already did all of that at first. His 2nd blog post was that he recovered, then another after that was that he relapsed. He literally wrote that the initially thought he could exercise his way out of this and failed. It looks like he rested and paced long enough...

If there's one good thing that could come out of this is pushing Greenhalgh out of the LC picture. She's coming off very poorly, mass-blocking (so much for patient engagement) and tweeting with replies disabled. It's revealing how unserious these people are, so-called experts in medical evidence...

Or his initial months of failure doing the exact same thing without ever having considered any of the ME stuff. Like you said, let's all ignore it, this is far larger than the odd episode.

Same difference. The packaging doesn't change much about the content. But the phrasing is definitely familiarly odd and unnatural, a mantra to repeat more than a real sentiment.

It appears to be the LP folks who got to him so most likely he is saying those things because of the process. Seriously folks ignore him. Someone who has chosen to push a N=1 anecdote as generalizable despite being an actual expert on medical evidence about an illness that is well-known to...

Since there is so little information and feedback about those clinics. Seem to advise pacing, but encouraging graded activity. Otherwise nothing most patients will not already have found on social media. Closer to wellness coaching for healthy people, frankly. My favorite part is talking...

What?! Are you saying my magical "cures all colds" rock that I placed beneath my pillow every time I have a cold is a sham? It worked every time! Now excuse me while I bottle mustard slabs for my cancer cure which 100% works if you only consider that one anecdotal case that no one verified...

The WHO has a training module. It says it's 3h for normies so could be a big long to follow it all. https://openwho.org/courses/clinical-management-COVID-19-rehabilitation Module 2 is about explaining the etiology of brain fog. I guess we missed the fact that medicine had done that. Module 3...

Moved from the long Covid thread. Well, I guess we can kiss any progress at Cochrane goodbye. This is why anecdotes are unreliable. https://blogs.bmj.com/bmj/2021/01/25/paul-garner-on-his-recovery-from-long-covid/ Good for him, bad for nearly everyone else.

Seeing a lot of that dynamic with LC clinics and physicians vs. physios. Lots and lots of bad comments about rude doctors. Lots of appreciation for physios, even though they can't do much more than say most of the stuff they found on social media. Basic decency is seriously missing out of...

Those comments look straight out of the brochure. Speaking of which, there's a lot of that on twitter recently over FND. Lots of accounts that claim to be patients but speak very unnaturally. It's possible that all they're doing is repeating the sales pitch because they believe in it but their...

I do see some of that, for example the EDS society, and most patient advocates strongly dislike them and would rather they go away. They seem to be like Action4ME was around the time of the BPS takeover and their support of PACE. So some BPSers have taken this in their own favor, did something...

Tl;DW of the response: we may, at some point in the future, consider thinking about being prepared for an eventuality that may or may not arise and maybe assign one temp or something. We are at the 9 months mark. Many already fit the criteria and with time many more will too. This is happening...

It was pretty good, other than framing it as a unique brand-new thing. Fair account of the difficulties faced, governments and medical institutions are completely oblivious to the problem and offering no help whatsoever. We're at an inflection point where many are facing dire financial...