Trisha Greenhalgh on ME/CFS and Long Covid

https://twitter.com/user/status/1451904815630536715


ETA: a comment regarding NICE perhaps? Maybe she'd like more emphasis placed on "clinician's experiences"?

 

Could well be.

Ironically, the evidence based medicine at NICE systematically devalued randomised sort-of-controlled trials and took seriously the other kind of evidence - patients' lived experience.

It seems that she is proclaiming loud and clear that she doesn't get it. She doesn't get the way human nature influences evidence gathering.

 

https://twitter.com/user/status/1451906892805124102

 

EBM’s other problem is quality. A lot of the time
the data in a paper simply do not match the conclusions
yet the conclusions are what get cited.

Not sure that is a problem for EBM though. NICE cited the data quality and ignored the conclusions.
A bit like saying the problem with using rulers is that they are not always accurate to a nanometer or that people do not put them on straight.

 

Maybe this is going to be the BPS angle in response to the new NICE guideline ... Our sort of evidence is better than your sort of evidence.

 

Patient experience is an underdeveloped type of knowledge.

It could be worthwhile to study patient experience to better understand how it can be used, e.g. how to extract more reliable information from it, what kind of information it is best suited to provide, or how to discover novel information from it.

 

Different kinds of evidence, alternative facts, speaking your truth ... She really doesn't get science.

 

I dunno, she's mostly been talking lately about measures for preventing the spread of covid. I thought she might be referring to people who make the stupid argument that "we can't recommend mask-wearing without an RCT of it".

 

Also shared on a Michael Sharpe thread.

 

One problem with mass blocking voices that are inconvenient to your world view is that you silence quite a broad church. Although perhaps it is better to remain ignorant in order to protect and preserve the cognitive dissonance. So many people are confused to find they are blocked, despite having never interacted with her.

Somehow I remain unblocked by TG and MS despite having very many PwME/LC in my follows.

Very poor form. (I do selectively mute or block morons and trolls although thankfully they aren't a prominent feature in my Twitter experience at all).

https://twitter.com/user/status/1518928721553543177

 

I read Dr Asad’s tweet but was unable to even view what he was commenting on because I, too, am blocked.

I have never had any interactions with Prof G, but I have ‘ME’ in my twitter name

I decided not to read the thread further a couple of days ago, but glad to just see what it was all about. Thank you @SNT Gatchaman

 

Hah! I should have also quoted in plain text - because of course many won't see it displayed here.

TG's tweet was simply: "Lockdown does not cause hepatitis" (in response to the suggestion by covid minimisers that childhood hepatitis cases were because they hadn't been exposed to enough infections during lockdown).

 

See, she only blocks pwME because of abuse. Only reason she blocks people, is what she says. Or do we fall under disinformation? Unfortunately, few people can ask her, being blocked and all.

It appears though that she is also blocking minimizers and other BGD types.

https://twitter.com/user/status/1525899725462978560

 

She used a "mass-blocking tool", which I assume works something along the lines of mass blocking people that are all connected to eachother. https://twitter.com/user/status/1351626294509903872
I doubt she set out to specifically block pwME, but because she blocked a few people with ME that probably meant masses of others were blocked too

 

LOL. "I'm going to continue blocking". Later on write tweet saying "Don't just block people". Amazing.

 

Link to original tweet for anybody yet to be blocked by her.

 

I think she blocked far wider than just people who sent or liked abusive tweets. Pretty sure I haven’t liked anything abusive, and certainly not sent anything.

Is this another round of blocking? I was blocked in the first mass blocking episode.

 

This round is unlikely to catch anyone here.

 

I think TG automatically blocks anyone who follows someone she has blocked in the past. I was blocked a long time ago and so anyone who follows me (not a huge number!) will be blocked. There is someone doing research on microclots who recently started following me (because we were at an event together), and they have been blocked. This is a hypothesis which I have not tested! Did her thread on Long Covid mention PEM at all?