Trisha Greenhalgh on ME/CFS and Long Covid

True. I'm forgetting my history lessons.

 

It's certainly nothing unusual when comparing to how most talk about us on medical forums. Or about patients in general, frankly.

 

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:

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.

 

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.

 

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)

 

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.

 

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.

 

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

 

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.

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.

 

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.

 

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.

 

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.

 

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).

 

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.

 

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.