Trisha Greenhalgh on ME/CFS and Long Covid

Important to emphasize. The process of dehumanization, of calling us mere trolls and campaigners, shields the fact that they are talking this way about sick people. Whatever framing they put, whether they want to push their psychosomatic tropes, they are still talking about patients, about real human beings suffering immensely.

That's why they never name us or abuse language to confuse us with anti-mask trolls or whatever. Greenhalgh called us trolls and single-issue campaigners, which I have no idea why it's bad but that was her intent. They know they are talking about millions of sick people, but are very careful to never raise that fact, to always talk about us in general terms, as some far-away concern.

No, we are humans, sick, and no one should ever treat someone suffering like this with this much disrespect, even more so as physicians. Their shameless disregard for millions of human lives is sickening and a sign of deep moral rot in medicine, where it's considered perfectly civil to dismiss sick people based on the nature of their illness.

https://twitter.com/user/status/1355819271075540993

 

Stregthening their position amongst those with power seem a good tactic to me.

I have problems with some of the way Greenhalgh has behaved, but I think it's difficult to justify saying that, for example, this tweet was "demonising a whole group of sick people."

https://twitter.com/user/status/1353274440025583616


She doesn't mention a whole group of sick people. I think that any sort of heated or exaggerated language like that is a bad idea.

Also, I've not had experience of lots of different people being critical of me on social media, and don't know what that's like, but it's seems that it's often something that people experience in a way that might be surprising. There's reason from Greenhalgh's past to think that she hold some prejudiced views about ME/CFS patients, and combining the two could well lead to a response that patients would view as a form of gaslighting, but Greenahalgh and her colleagues could then see an accusation of gaslighting as absurd.

The way that a lot of powerful people have behaved with regards to ME/CFS is terrible, but I worry that we're going to lose the arguments about that because there's so much anger around it (which is always unappealing to the comfortable), and this can lead to a lack of caution in the way concerns are expressed.

~Edit - to add that I thought Greenhalgh treated the patients who listened to her webinar and raised concerns about it very unfairly. Without hearing the webinar myself it's difficult to be 100%, but even if they all coincidentally misremembered what she said in a similar way, they way she responded to them raising concerns was bad.

 

Direct quote: "Not doing media right now, gets me more abuse. I’ve had death threats this week. Taking a break."

and I replied: "Do you have any evidence for that? Last time someone claimed this, there was none. I guess there's no point in asking anyway since ur gonna block me"

 

But that is what TG is using; heated and exaggerated language.

I don't actually think she holds much power here. I think she is making a complete fool of herself and that will remain evident.

I we say that what works is sousing off garbage - like TG - the why not do the same? I quite agree that she things that patients tweet are unhelpful but in the round I strongly suspect the more noise the more effect.

And apart from anything else, if the idea is that patients are mislead by unreasonable beliefs than why be surprised if they come out with unreasonable beliefs? As I have said before, psychiatrists and general practitioners are taught to manage that with care and compassion.

I actually think these people are losing. They started out hoping to be great saviours of Long Covid and have ended up being personae non grata with the Long Covid people. I am not sure where they can go next to be honest.

 

I'm saying that I think those with power can get away with more than patients. They have more power to select what comments get greater attention, what narrative gets most widely promoted, etc. Also, they have access to the sorts of private discussions that are most important.

Also - anything that seems to support the idea that patients are particularly misled by unreasonable beliefs is going to be bad for us - even if we can say they shouldn't be surprised!

I think that in the UK they're winning in the key areas (who has power), and that we're winning in the areas that don't matter so much (some of the language people are meant to use when wielding their power). That could be the sign of the start of a real shift, but if so it looks like a slow and painful one to me.

I'm not sure Greenhalgh would see her tweet in that way. I have no idea what's going on in her mind, but there are a range of options. If I had to, I'd guess that she's quite genuinely prejudiced with regards to ME/CFS, and that this affects a lot of how she interprets things, but who knows?

I'm all for calling out problems, but this is most effectively done in a cautious and careful way.

I also recognise that we're never going to be able to reach a point where millions of mistreated sick people all avoid posting any unreasonable heated comment on social media, and that any rare example can be used to support the narrative that lets powerful people evade justified criticism. But it's also good to keep remembering and reminding people that any heated or unreasonable comments are a problem. Justified anger from mistreated patients can be counter-productive. And mistreated patients can have unreasonable and misdirected anger too. Concern about the way powerful people present patient critics of work like PACE should also consider if patients do anything that lets them get away with this.

 

Yes, but that's difficult to do and one often needs to be particularly calm, reasonable and clear in those sorts of cases.

In terms of the general public recognising the problems with prejudice around ME/CFS, we've still got a long way to go. For a long time people were able to express prejudices around race in subtle ways, partly because those issues were often poorly understood (and many people did not care). A strong accusation of racism on the basis of a history of subtle problems would often be counter-productive, and there are always going to be border-line cases that people will disagree on. I've got no confidence in my understanding of Greehalgh mind. Generally people are far more aware of problems around racism than ME/CFS though, and that needs to be accounted for in public discussions. Also, there's still a lot of deference to the instincts of those with authority around medicine compared to other areas of life.

 

and some academics/journalists without ME or long-Covid who have never interacted with her

 

You mean just now in this thread? I've just been replying to other peoples' comments.

I thought that some of the comments here about Garner's last blog were unfair and too heated, and then seeing similar comments on twitter that tagged him seemed worse again.

 

In this robust debate, I think there's a lot of overall agreement. Unless I'm misunderstanding, a big part of the point that @Esther12 is valiantly making is definitely NOT that people should refrain from legitimate critiques but that people should take care with their tone and be scrupulous in accurately framing the statements of others. I doubt there's too much disagreement with that. I don't think anyone is suggesting that patients are wrong to be outraged or is questioning why they feel such a need to respond strongly to widely disseminated statements from perceived experts.

Journalists often rely on editors to pull them back from over-statements of fact and over-emotional language. I have to be very careful when I tweet to say what I mean and not use snark or what I view as irony in a way that can be misconstrued. Those with more powerful platforms are very practiced at taking something hyperbolic and present it as if the person meant it literally--as when I've been quoted as calling researchers "insane". In fact, what I remember saying is that believing in the validity of PACE and related research is "insane"--but perhaps somewhere or other I've called the researchers "insane" to believe it. In the US, this would clearly not be taken to have been meant literally--but that's how it has been used in articles in UK that have cited it as part of my unhinged "campaign."

I tend to wait a couple of days before posting any blogs, because in the interim I tend to edit out words that I think might be misinterpreted or language that might be un-cautious or over-stated. Sometimes I send them to valued friends who offer good advice about where to pull back. Sometimes I take that advice, but not always. I might leave something snarky in for effect. I think a few years ago I was more likely to be flip--now I try to check that impulse more often than not. Don't misunderstand--I would still tear up PACE in public. Critiquing a study or a statement, even harshly, is warranted. Attacking the person is not. I do my best to stay as far away from the latter as possible. But on Twitter and other platforms that favor and elicit quick and often not-fully-considered responses, it's very easy for anyone to slip and get personal.

 

And I've thought that considering his blog the comments here have been remarkably restrained considering. And I'm not sure what relevance tweets you disapprove of have to the comments made here.

 

I have hardly seen any tweets that are particularly over-the-top; most of it just seems to be relating personal experience or disagreeing with something someone has posted - this is not abuse. I have seen TG as just wanting to silence people relating their experience of MECFS, interpreting it (for others) at a criticism of her - which she they interprets as "trolling" or "abuse" - and seems to be knowingly allowing people to think she's responding to anti maskers when she talks about blocking and trolling in relation to MECFS patients.

 

One key point is that if a few people call out a questionable statement, it can often be helpful, but if 50 people join in, it becomes a pile-on and those who believe such questionable statements tend to double-down.

I suspect it is the quantity of comments that has led TG to choose the option of prospectively blocking large numbers of people.

 

She has a huge audience and is making sweeping statements about what she probably perceives as "controversial" topics, so I find the notion that the quantity of comments led her to block people even more troubling. It just comes across to me that she does not want any other perspectives other than her own. She probably realized that the blocking was somewhat of a mistake and looked very unprofessional, so she has undone some of it.