Trisha Greenhalgh on ME/CFS and Long Covid

rvallee said:
Reading Gerada's thread I'm getting really creepy vibes about the culture of UK medicine. Same with Greenhalgh. Everyone is just plain sucking up to them, showering them with praise despite not even knowing what is being discussed. It's seriously creepy. Reminds me of corporate boards where a cult-like president has everyone outdoing each other praising him so they can get their patronage.

This is seriously unhealthy. I'm used to there being essentially no criticism in this area, no reads the actual papers yet shower each other with praise. But this is near cult-like. I'm sure it's just politics because that's how people get noticed but that's not any better at all. There is no discussion of substance, only a "that eminent person says bad things about those others therefore those others are horrible people who deserve bad things".

Seriously so many comments are basically "everything you say is always right and will always be right forever and ever". No one could even answer basic questions about what is being discussed, who is being discussed and why. Yet they pile on the praise. Extremely creepy.
Click to expand...
This is a serious problem in our mental health rights/legislation/support, where a certain psychiatrist has been playing a lead role. He hasn't just upset the ME community, but lots of other disability groups:

Dorothy Gould, co-founder of the new user-led, rights-based organisation Liberation*, said: “It is undoubtedly true that the MHA white paper is extensive and looks at a large number of much-needed improvements to the current act.

“However, these improvements fall well short of the government’s claim that it is bringing the law ‘into the 21st century’.

“It is also intensely worrying that Matt Hancock regards the Wessely review, on which the white paper is based, as ‘one of the finest pieces of work on the treatment of mental health that has been done anywhere in the world’.

“It is devastating that, so far from drawing adequately on promising international developments elsewhere and the full human rights set out in the UN Convention on the Rights of Persons with Disabilities, the white paper repeats many major flaws in the Wessely review.”

She said the white paper “retains a dominant medical model focus”, and added: “It aims to reduce, but not bring to an end, the fundamental breach of human rights represented by involuntary detention in psychiatric hospitals and forced treatment.
Click to expand...

https://www.disabilitynewsservice.com/rights-concerns-over-major-mental-health-act-reforms/

In the UK these people are rewarded with knighthoods, peers and other titles. I suspect many medical professionals (those who are busy actually practicing medicine) have the same low opinion of these people as do patients.

Edit: For non UK forum members, Matt Hancock is our Secretary of State for Health and Social Care.
 
Last edited:
I find it hard not to conclude that much of this is an act played out publicly to an audience of fellow physicians who support anything they do no matter what, as evidenced by their twitter feed. They are trying to influence their peers into siding with them, abusing their influence for personal and ideological gain. How many is the question. This is about taking sides, not substance.

It even heavily features DARVO, a classic method in politics. Deny, Attack, Reverse Victim and Offender. They are the victims. They can't understand why there is controversy over something so simple, they are being silenced, even as they silence their victims. Their lived experience is being denied, they who have been doing just that to millions for decades. They have all the power but powerful people, shadowy and unnamed, are against them.

It's never sophisticated and is mostly shameless trolling. But it works when you 1) have the balance of power, 2) don't care about integrity and 3) neither does your audience. But it really does work. In politics. Only question is whether the issue remains strictly political or not.

But this is mostly an act. The trolling is too forced. They are not that naïve, they understand what they are doing. And it's entirely self-serving, once commitment has been escalated, there is only further commitment.

I hate politics for this reason. But I understand it well enough to see it here. Medicine should not be political, or at least not this much. This is completely broken.
 
Marky said:
Not sure if anyone mentioned it, but she claimed to have gotten death threats, and when I asked for evidence in light of such claims lacking it in the past, she did not reply (nor block me, surprisingly)
Click to expand...

I think I saw that tweet (tho I’m blocked now as part of her mass blocking) but if I remember correctly the tweet said something along the lines of her not liking the aggro, so she was going to block so she wouldn’t get death threats as she’d heard others had??

My memory might be wrong of course.
 
Marky said:
Not sure if anyone mentioned it, but she claimed to have gotten death threats, and when I asked for evidence in light of such claims lacking it in the past, she did not reply (nor block me, surprisingly)
Click to expand...
Keela Too said:
I think I saw that tweet (tho I’m blocked now as part of her mass blocking) but if I remember correctly the tweet said something along the lines of her not liking the aggro, so she was going to block so she wouldn’t get death threats as she’d heard others had??

My memory might be wrong of course.
Click to expand...

I had remembered it as saying if she got death threats she would report them. Which sounded like a way to bash a patient community and bring up old stories etc.

I think many of us have seen a lot of the twitter conversations going on. I've not seen anything in terms of threats. Have any others?
 
rvallee said:
But it works when you 1) have the balance of power, 2) don't care about integrity and 3) neither does your audience. But it really does work. In politics. Only question is whether the issue remains strictly political or not.
Click to expand...

There's also the importance of patients behaving stupidly on social media too. If patients were consistently calm, reasonable and clear in their responses to people like Gerada then we'd have far less of a problem. Looking at twitter is grim for most subjects, but that doesn't help us. Also, a lot of patients seem to make responses that will only make sense to those who know all the context and would agree with the patient in the first place - what's the value of that? It also seems that a lot of patients are under a misapprehension about what battles have already been won and so are weirdly over-confident and don't feel any need to explain or justify their concerns on some issues.

I think that some of the problems with work like PACE are so clear, and the way those in authority have responded so terrible, that it has been really confusing for a lot of patients - also, some patients are just unpleasant idiots, as in any other group, and the problems around ME/CFS only make that worse.
 
I think being upset by gaslighting is a rational response. We can’t know individual circumstances and being able to be consistently calm clear and reasonable is a privilege associated with people who are healthy and don’t have all the challenges associated with having a chronic illness especially those with severe illness.
 
Esther12 said:
There's also the importance of patients behaving stupidly on social media too. If patients were consistently calm, reasonable and clear in their responses to people like Gerada then we'd have far less of a problem.
Click to expand...
While I agree it is much better when patients behave rationally, politely, take the high moral ground etc., many patients have been harmed by medical professionals (this is particularly true of psychiatry) plus simply don't have the mental capacity and/or emotional education to be able to do this. It is perfectly reasonable to expect far higher standards from medical professionals and any working in the mental health field should have received training in how to handle difficult patients (above and beyond the training all medical and health professionals receive).

Edit: cross posted with @NelliePledge
 
NelliePledge said:
I think being upset by gaslighting is a rational response. We can’t know individual circumstances and being able to be consistently calm clear and reasonable is a privilege associated with people who are healthy and don’t have all the challenges associated with having a chronic illness especially those with severe illness.
Click to expand...

It's reasonable to be upset by lots of things. Posting a message online that is unlikely to do anything but make things worse is not a good idea though.

The way that marginalised groups are judged for expressing their pain and upset is unfair, and is often used by those with power to help justify their marginalisation. That's a terrible thing and it would be great if we could change that, but that is the way things still are and if we want to improve things we need to be aware of that.

Simbindi said:
While I agree it is much better when patients behave rationally, politely, take the high moral ground etc., many patients have been harmed by medical professionals (this is particularly true of psychiatry) plus simply don't have the mental capacity and/or emotional education to be able to do this. It is perfectly reasonable to expect far higher standards from medical professionals and any working in the mental health field should have received training in how to handle difficult patients (above and beyond the training all medical and health professionals receive).

Edit: cross posted with @NelliePledge
Click to expand...

I agree. But some of those with power are quite happy to be less than perfectly reasonable when it serves their interests. If what was reasonable guided the way ME/CFS patients were treated then we wouldn't be in this situation. To make real progress we're going to have to work effectively within a system and society that is unreasonable.
 
It is right to correct inappropriate behaviour and comments from anyone on social media, regardless of their health or mental difficulties. But how this is done is key. For example, any teacher would know it is essential to model appropriate behaviour to problem students...

These professionals are completely without excuse for their behaviour and should be called out on it as they are the ones speaking from a position of authority and supposed expertise.
 
Last edited:
NelliePledge said:
I don’t think generalised criticism of people whose circumstances we can’t possibly know is constructive or contributes anything positive to advocacy.
Click to expand...

I was unsure about posting specific examples partly because I can't know their circumstances and didn't want to be seen as 'picking' on an individual who could be going through a particularly terrible time.

I do think that, in terms of advocacy, it's important that we're not surprised that powerful and influential people get away with using silly or unpleasant comments on social media to undermine criticism of their work. This has been a successful tactic for a long time, and part of the reason it works is because of the behaviour of some patients on twitter.
 
Esther12 said:
I do think that, in terms of advocacy, it's important that we're not surprised that powerful and influential people get away with using silly or unpleasant comments on social media to undermine criticism of their work. This has been a successful tactic for a long time, and part of the reason it works is because of the behaviour of some patients on twitter.
Click to expand...
I think these individuals are still stuck in the past, when patients didn't have access to information and understand professional standards. For example, how naive of CG to think that her BBC appearance wouldn't be available as an on demand recording, from which a transcript of what she actually said could be (and was) made! Or that her old GP CFS training video wouldn't be found and posted to today's social media audience.

Gaslighting works by confusing the victim(s) and making them believe you didn't say what you did. Much harder to do that in today's society than 20-30 years ago. Much harder to bury anything once it is in the public domain.
 
Simbindi said:
I think these individuals are still stuck in the past, when patients didn't have access to information and understand professional standards. For example, how naive of CG to think that her BBC appearance wouldn't be available as an on demand recording, from which a transcript of what she actually said could be (and was) made! Or that her old GP CFS training video wouldn't be found and posted to today's social media audience.

Gaslighting works by confusing the victim(s) and making them believe you didn't say what you did. Much harder to do that in today's society than 20-30 years ago. Much harder to bury anything once it is in the public domain.
Click to expand...

I don't know what's going on in her mind, but I'd assume that she's more cynical than naive (with her recent comments anyway). To me, it seems that they, and the way some patients responded to her and Garner, are likely to have strengthened her position, and those of someone like Vogt.
 
Esther12 said:
I don't know what's going on in her mind, but I'd assume that she's more cynical than naive (with her recent comments anyway). To me, it seems that they, and the way some patients responded to her and Garner, are likely to have strengthened her position, and those of someone like Vogt.
Click to expand...
I don't think it will strengthen her position in the longer term, because she is effectively starting to gaslight a whole new group of patients (those with long Covid) many of whom are smart professionals and are able to see right through her behaviour.

Her false claim that she was speaking about her own personal experience and not as an 'expert' invited on to the BBC is very apparent in the context of what was said by the BBC presenter during the interview (and as a recap).
 
Last edited:
strategist said:
The lack of criticism I think it has a lot do with fear of reprisal. They're sensitive to criticism and tend to respond aggressively to it. Nothing is allowed to tarnish the image of the competent expert.

The irony is that with this close mindedness you can't ever become very competent.
Click to expand...
If their objective was to become competent, they would have placed their attention, time, and effort into that task rather than admiring their own selves and insisting on repetition of that from others.
 
Simbindi said:
I don't think it will strengthen her position in the longer term, because she is effectively starting to gaslight a whole new group of patients (those with long Covid) many of whom are smart professionals.

Her claim that she was speaking about her own personal experience and not as an 'expert' invited on to the BBC is very apparent in the context of what was said by the BBC presenter during the interview (and as a recap).
Click to expand...

Many of those with Long Covid are likely to recover while increasing their activity levels (even assuming that GET in not useful for those with PVFS).

Gerada was made a Dame last year.

Will anyone be surprised if to see Wessely in the House of Lords?

To me, it looks like they're playing the game quite effectively.
 
You must log in or register to reply here.
Back
Top Bottom