Trisha Greenhalgh on ME/CFS and Long Covid

Snowdrop said:
Tweet from previous post taken down.

Am extremely disappointed in Karim Khan. What a horrible thing to do at this point (or any point) aren't we past all this?

ETA: Sadly there does not seem to be any charity organisation willing to take this kind of thing on here.
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Yes, very disapointing! Very concerning to be providing a platform for this harmful information. We're being terribly let down. What gives?
 
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Is history going to repeat itself, and assume psychological causes for LC? I've been very occupied with some other of life's trials, and haven't noted if there are studies doing extensive biomedical testing, including MRIs for LC. Or are those with LC going to go through the torture pwME have?
 
Right there with Sharpe tweeting about accepting when you make mistakes. I don't know if it's truly a complete inability for self-reflection or what?



No, obviously the solution is to block every pwME raising that point. Now that is good public health communication!
 
ScottTriGuy said:
Trish's tightness to SW explains why she was against ME patients without provocation.
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We've known about her views for a long time.

‘Health for me’: a sociocultural analysis of healthism in the middle classes (2004)
Trisha Greenhalgh, Simon Wessely
https://academic.oup.com/bmb/article/69/1/197/523356

(the article tries to suggest that "articulate, health-aware and information-rich middle-class" people aren't as ill as they say and often consult medical practitioners without good reason).

Seems not much has changed.
 
DokaGirl said:
Yes, very disapointing! Very concerning to be providing a platform for this harmful information. We're being terribly let down. What gives?
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I'd like to know how this came about and some assurance it won't be happening again in the future.

A number of people spoke out with concerns, both publicly and privately, when the webinar notice was first posted, as it was originally billed as a webinar on Long Covid, Myalgic Encephalomyelitis and more. (image below) I wasn't provided with any satisfactory answer. I'm not sure anyone was, but later images promoting the event through the CIHR had the word "Myalgic Encephalomyelitis" removed. (image below) I can only assume ME was taken off the table due to all the concerns raised, but, sadly, without communicating this directly to the people who raised the concerns.

I tuned in briefly but wasn't at all sure what I was tuning in to.


Trish Greenhalgh Jan 2021.jpg Trish Greenhalgh 2 Jan 2021.jpg
 
@brf Thank you very much for addressing this with CIHR!

You may recall a similar thing happened at NIH. Following NIH finally announcing it recognized ME as serious, and a promise of increased research funding, they invited a speaker who has promoted misinformation about ME for a long time.

These institutional inconsistencies are infuriating, puzzling, and very frustrating.

Thank you to all who button-holed both CIHR and NIH on these lapses.
 
It would seem institutions can't wrap their heads around when eminence speaks it's not de facto evidence.

I guess they just think certain names will draw a bigger virtual crowd when what's needed is someone grounded in reality and possessed of common sense who communicates clearly.
 
Yes, @Snowdrop, eminence at all costs it seems. Collegial relationships above the truth, and respect for human rights. Multimillion person communities brushed aside for the sake of getting along with colleagues who are misinformed. The institutional dismissals after countless person hours invested at high cost is beyond disheartening.
 
I hope and suspect that this (if true) has been coming from anti-lockdown idiots but it is unfortunate that she doesn’t specify, having very publicly, and in my view falsely, accused Peter (not Denton) White of malicious representation of her views on ME/CFS and blocked him:
 
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Just discovered that both the forum Twitter account and my, very rarely used, personal Twitter account, have been blocked by Greenhalgh. So, as has been said by others, it's obviously "Listen to the patients, but only the right type of patients".
 
Andy said:
Just discovered that both the forum Twitter account and my, very rarely used, personal Twitter account, have been blocked by Greenhalgh. So, as has been said by others, it's obviously "Listen to the patients, but only the right type of patients".
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My first thought this is that she (as an Oxford Don) thinks patients are the great unwashed and how dare they comment on the science! But I wonder if there is just a certain amount of embarassment in that things she says about ME clearly don't stand up to scrutiny - hence an effort to avoid challenge. But I guess we will never really know what motivates her to push particular views even in contradiction to standards of evidence that she claims to represent.

I was concerned about a tweet where she said something about death threats being reported. This seems intended to feed into a narative of ME patients being dangerous and violent - and aimed at a group of patients. Which I think is appauling.
 
Andy said:
Just discovered that both the forum Twitter account and my, very rarely used, personal Twitter account, have been blocked by Greenhalgh. So, as has been said by others, it's obviously "Listen to the patients, but only the right type of patients".
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Did she really block individual accounts or did she just apply a function that enables only comments by people followed by the owner of the account / people mentioned in a Tweet?
 
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