Trisha Greenhalgh on ME/CFS and Long Covid

This is really strange, to me. Why does TG need someone to "mediate" this? If she wants to deal with it why doesn't she stop blocking people on twitter due to their being ME/CFS patients? All she needs to do is remove whatever filter she is using - and should not be using. There is no legitimate reason for her to block ME patients - she is blocking people she has never interacted with.

This "mediation" talk makes it seem like some people have been blocked in error because she has legitimately used filters to block abusive accounts, and overdone it. But this is not the case, and she has clearly used a block on ME patients, perhaps on people with "MECFS" in bio or something. (I don't know the exact block; I am not blocked but I don't have this in my bio.) This is unacceptable and the fact that it's continuing while she speaks about LC being "real" etc on things like Independent Sage is absurd.

 

You’d think…

 

I doubt this can be simply undone and she seems to block so many people that it would be hard to find out who was blocked how and for why. Those tools don't leave a trace.

So it seems like the right way to do it. Not that I see any reason to, I don't see TG doing us any better than Garner. But if people want to see it, they have the option.

 

https://twitter.com/user/status/1639930407788371970


https://twitter.com/user/status/1640128015928643587

 

I've asked for the forum account to be unblocked, though I'm not holding my breath for it to happen.

 

Wow. The forum account is blocked? That is unbelievably bad.

I wish more people knew about this block that has been put on - I think it says a lot.

ETA: What terms etc do you have to block to block Science for ME? It shows there is no reasonable terms you can block and you are just blocking stuff about ME.

 

My best guess is that it has been blocked due to second- or third-hand connections to accounts that TG took offence at.

This earlier post from Jan 2021

links to a Twitter poll that shows, at the time, 67% of 678 respondents reported having been blocked by TG, so I don't think her blocking people is particularly targeted.

 

Well, to my surprise, the forum account has been unblocked.

 

I think something close to your imagined narrative is possible @Trish and I hope it’s right.

My recollection is that the person she initially appeared to be accusing of misrepresenting her views was Peter (not Denton) White, who reported comments she’d made about ME/CFS and GET etc. at an online conference. Peter appears to be a very levelheaded and reasonable person as well as a reliable witness. At the time he expressed a willingness to correct anything he had got wrong but TG chose to block him and remain silent on her views about ME/CFS instead.

My recollection is that several other people later confirmed Peter’s account.

To be fair, she made the same offer almost immediately after the mass block. She unblocked me and several others on request via intermediaries at that time.

I agree with your sentiments but I think it may be more realistic to expect her to make her views on the BPS models, PACE, CBT, GET etc clear. I do feel strongly that those responsible for all the problems should be held to account – and I sincerely hope that will happen at a public inquiry and in the civil courts in due course – but I would be surprised if she were to publicly denounce individuals. If she were to acknowledge all the issues with BPS research and the mistreatment of patients that has resulted she would effectively be denouncing those responsible. That and a sincere and full apology would be enough for me at this stage.

I only speak for myself but if you’re reading this Trish (G), please know that I would be delighted to accept such an apology. You might be surprised to learn how kind and forgiving many people with ME/CFS are. Thanks.

 

https://twitter.com/user/status/1639559526004191232

 

TG on Twitter. If this succeeds then we might have a better route to complain about doctors who make false statements about ME/CFS on social media.

"The UK General Medical Council has adopted an antiquated position on doctors who spread false & misleading information on social media. This position is putting the public at risk. It must be challenged, or doctors with ‘fringe’ views will continue to have harmful influence."

"In USA, a doctor is not allowed to spread misinformation (inaccurate or misleading information) or disinformation (deliberate lies) about vaccines. US regulators recognise that doctors’ right to ‘free speech’ is not absolute and that they must not abuse public trust."

"But the GMC has taken the position that doctors who propagate fringe views on vaccines should not be investigated. They have cited ‘freedom of speech’, ‘scientific debate’ and lack of direct proof linking a particular anti-vax statement with harm to a particular patient."

"Scientific debate is important. But is any statement about science made by a doctor a ‘contribution to scientific debate’? Not if it is a lie. Not if the facts are fake or cherry-picked to mislead. Science progresses by *organised skepticism*, not by crafted lies."

"The days when the worst harm a doctor could do was remove the wrong kidney of their own patient are long gone. These days, ‘celebrity’ doctors whose social media platforms reach millions have the power and potential to harm vast numbers of people they’ve never met."

"But the GMC’s decision-making is set in a 20th-century world where social media hasn’t yet been invented or abused. The fringe celebrity doctor with scientifically untenable views and international reach, it says, is not its problem unless a specific patient incurs harm."

"Some doctors appear to have been emboldened by the GMC’s inaction, and they will continue to propagate and amplify misinformation or disinformation until called to account. This is why a group of concerned doctors have taken steps towards legal against the GMC."

"No doctor wants to sue their own regulator! But the GMC’s refusal to act left them with no other option. The doctors do not pre-judge the outcome of a GMC investigation, they just want one to happen."

"A JUDICIAL REVIEW is a legal process where someone can ask whether (say) a regulatory body is doing the job it was set up to do. These reviews involve lawyers making arguments and counter-arguments, which means they cost money."

"The group of doctors has issued a ‘pre-action letter’ to the GMC and is now raising money to get to the next stage of the judicial review (the official commencement of legal action). The group is led by a junior doctor and includes consultants, GPs and mid-career doctors."

 

TG's comments sound superficially good. But I wonder how people like Barry Marshall would have fared in TGs brave new world of only accepted beliefs being allowed to be propagated?

Antibiotics for stomach ulcers? Quackery! Off with his head!

 

To be fair to the GMC on this, maybe they recognise that they're not up to the job of deciding what is or is not misinformation?

Doctors promoting anti-vaccine nonsense is bad, but do we think that the GMC is up to the job of deciding what doctors should or should not say? There are things that would make me question Greenhalgh's judgements on these matters.

Maybe part of the problem here is that there are still sections of the public that trust the authority of doctors more than they should, and we should do more to make all aware that doctors often believe and promote different forms of nonsense, so it's always worth trying to quadruple-check what is claimed and think critically?

 

Come on, @Esther12, the great majority of people are in no position to work out whether what doctors say is valid. You need the sort of high level scientific critique we get on here to get near that - and you rarely even get that level at medical scientific meetings. Most doctors aren't bright or honest enough to work out what makes sense - or they happily ignore the arguments when it comes to vested interest.

There is no need to be fair to the GMC. It is a disastrous organisation that protects medical cronyism up to the hilt and yet happily destroys individual doctors lives for PR purposes. It stinks like a neglected toilet. Of course they should be able to decide what is disinformation - within reasonable limits.

 

It is an interesting topic. A more interesting one is to think of any industries/sectors where regulators and/or oversight does manage to do a good job, and what is particular about what makes these things work because I suspect the process and other bits is more/as important as the 'policy'. And the implementation and devil is often in the detail of how these things work well rather than unintended consequences or same issues in different places type thing.

the air industry is oft-cited re: accidents and improvements learned from near misses, but I'd be intrigued to know more about how far that extends and how that works as there is the typical issue of lots of places with good policies and its the how you get the implementation part to happen that is when you begin 'cooking on gas'.

Are there others that could provide good examples of set-ups and things that work, or at least seem to be half-decent and evolving in the right direction etc?

 

Yeah @Trish i don’t think you should worry about this and glad you’ve put a copy here so we who aren’t on blue sky can read fir ourselves. so thank you as I think the trail says it clearly for itself.

 

I find realising that as a grown up whose been fine with a lot more ‘difficult’ than most

it helps to remember that if something like this upsets me that’s because the writer intended / did it to upset their target.

that’s different to saying that’s anything about or to do with you or what you said being wrong or inappropriate- it’s just a tool on the belt some choose to use

not nice and all about trying to make you feel defensive instead of them but those who do it tend to do it as a pattern ie readers will notice when this sort of things comes out if so