Trisha Greenhalgh on ME/CFS and Long Covid

Art Vandelay said:
a comment regarding NICE perhaps? Maybe she'd like more emphasis placed on "clinician's experiences"?
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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.
 
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.
 
Jonathan Edwards said:
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.
Click to expand...
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.
 
Art Vandelay said:


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

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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".
 
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).

 
SNT Gatchaman said:
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
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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 :emoji_bouquet:
 
It's M.E. Linda said:
I read Dr Asad’s tweet but was unable to even view what he was commenting on because I, too, am blocked.
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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.

 
rvallee said:
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.

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She used a "mass-blocking tool", which I assume works something along the lines of mass blocking people that are all connected to eachother. 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
 
Yeah and she’s clearly not bothered about lumping everyone together. People with ME in general aren’t worth her eminence engaging with.
 
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. :(
 
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?
 
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