Trisha Greenhalgh on ME/CFS and Long Covid

Snow Leopard said:
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.
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Esther12 said:
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.
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The sad thing is that some biomedical ME researchers have seen this and don't understand the hostility as they are not aware of all the details and history......... :(
 
Snow Leopard said:
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.
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And I would strongly suspect that she would be perfectly happy if the same quantity of comments were agreeing with her views, she certainly wouldn't be blocking people then. So it comes back to her denial of our lived experience, because it's different to her beliefs, the only way that she can reconcile the fact that there are so many comments trying to explain how she is wrong is to turn it into "abuse" of her, so then she can be "justified" in blocking so many of us.
 
Andy said:
And I would strongly suspect that she would be perfectly happy if the same quantity of comments were agreeing with her views, she certainly wouldn't be blocking people then. So it comes back to her denial of our lived experience, because it's different to her beliefs, the only way that she can reconcile the fact that there are so many comments trying to explain how she is wrong is to turn it into "abuse" of her, so then she can be "justified" in blocking so many of us.
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From what I've seen, tweets classed as "harassment" or "abuse" by those in the BPS cabal are merely pointing out that the Emperor is wearing no clothes.

She is making the allegation of 'trolling' because she is unable to justify her beliefs in a logical argument. After being cosseted in their echo chambers for so long, they're clearly not capable or used to having their beliefs challenged.
 
I normally do prefer like @Esther12 a cautious approach to advocacy on all platforms and shy away from the militant shouty approach (although I believe that has its place)

I think in this case I would suggest we still approach this with caution (which I think we already are doing) but recognise also that Twitter is a platform for influencing journalists, politicians and celebrities in the main (not the general public directly....too few active users to be any use there in terms of sustainable comms).

so when we are talking about tone we also need to think about robustly defending misinformation but also providing content i.e content that politicians and journalists recognise and can use to further our argument. Countering untruths is one thing but perhaps we should be creating our own headlines and play them at their own game?
 
Esther12 said:
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.
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I find your vicious and unprovoked attack to be unwarranted and insulting. To prevent me having to suffer any further harrassment and abuse I will not be engaging with you further. Please also be aware that should you send me any death threats, I will report them to the police immediately. Zero tolerance.
 
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Jonathan Edwards said:
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.
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I don't mean to be bitter or twisted here (it comes naturally!). I think Maureen Hanson's son is ill with ME and you can see how she's attempted to understand the disease [proteomics paper*]. If these people (TG+) applied the "you & yours test", my neighbour a casualty doctor refers to it, would they seriously promote a couple of laps around the block and some positive thinking - oh and evaluate it with a questionnaire? I think there are some serious double standards going on here - or they just don't have a clue.



*In-Depth Analysis of the Plasma Proteome in ME/CFS Exposes Disrupted Ephrin-Eph and Immune System Signaling
https://www.s4me.info/threads/in-de...une-system-signaling-2021-hanson-et-al.18886/
 
We're not especially in need of "more caution", but taking the initiative with well reasoned arguments because in reality we're in a strong position. The BPS people are reduced to personal anecdotes of benefit, TG just found out things are a little more complicated than "a small vocal minority of unreasonable extremists" (not her words, but roughly how BPS people used to describe patients critical of their work).

And people have mostly done this. But what we're having difficulty with is not having an easy time reaching a broader audience and that we're sick and well reasoned arguments is hard work.

What makes us strong at the moment is that NICE just said GET studies are junk science and GET shouldn't be recommended due to concerns of harm.
 
Start of a great Twitter thread.
I am getting quite fed up with doctors or people in medical professions telling people with #MECFS that it is our responsibility to calmly educate *them* on our illness, rather than get upset when they stigmatise us on public platforms with nonsense about ME being psychosomatic.
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Code: 
https://twitter.com/GnomesChainey/status/1356058364938096641
 
adambeyoncelowe said:
By the way, it seems the long COVID study can be undertaken by those not on Twitter. The second researcher tweeted her email address for anyone wanting to get involved who couldn't get on Twitter: Michelle.vanVelthoven@phc.ox.ac.uk
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So to find out you don't need to be on twitter to sign up you need to see this person's tweet?

I feel a comedy skit coming on . . .
 
arewenearlythereyet said:
I normally do prefer like @Esther12 a cautious approach to advocacy on all platforms and shy away from the militant shouty approach (although I believe that has its place)
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Yes I normally prefer that approach but I'm feeling far more militant at the moment (not sure why).

arewenearlythereyet said:
I think in this case I would suggest we still approach this with caution (which I think we already are doing) but recognise also that Twitter is a platform for influencing journalists, politicians and celebrities in the main (not the general public directly....too few active users to be any use there in terms of sustainable comms).
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I'm not sure twitter really influences anyone - more its a way of seeing what groups agree with you and who disagrees. Its not a medium that supports giving a persuasive argument.
 
Adrian said:
Yes I normally prefer that approach but I'm feeling far more militant at the moment (not sure why).


I'm not sure twitter really influences anyone - more its a way of seeing what groups agree with you and who disagrees. Its not a medium that supports giving a persuasive argument.
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I think it’s trendier to call yourself an activist nowadays ;)

Yes it isn't a great medium but a lot of influencing egos reside there spouting off and presumably listening sometimes. The BPS advocates certainly deploy the illusory truth effect (seems it’s the only tool in their limited toolbox).
 
Adrian said:
I'm not sure twitter really influences anyone - more its a way of seeing what groups agree with you and who disagrees.
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arewenearlythereyet said:
Yes it isn't a great medium but a lot of influencing egos reside there spouting off and presumably listening sometimes. The BPS advocates certainly deploy the illusory truth effect (seems it’s the only tool in their limited toolbox).
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I think there's interesting difference, though, between the way the BPS crew use Twitter, and the way ME and LC advocates (sorry, activists) do.

The former reveal their biases and complain about being victimised.

The latter respond, on the whole, by arguing their responses very cogently. Some do it so well (see #193 above) that they galvanise other sick people, helping them to articulate their own arguments and encouraging them to recruit fellow sufferers.

I think the BPSers are doing a pretty fair job of building an effective movement against themselves, to be honest.

ETA: changed 'them' to 'themselves' in final sentence.
 
A lot of people with ME on social media aren’t doing advocacy blogs etc don’t represent the ME community in any way probably don’t see themselves as activists just ordinary folks who go there to find information and support.

As such in my opinion other than not breaking the limited rules of social media and not engaging in discriminatory comments I think there is no basis for anyone to expect people to be considered and weighing their words when expressing the harm they have experienced. Social media posts are not articles subject to editorial policies. They are the equivalent of a discussion in the pub.
 
Please tell me what advances ME has received because the patients behaved sweetly to BPS? ME will never get free of BPS abusers by tiptoeing around. NICE spit out the BPS research. Proclaim it far and wide. Don't give BPS a chance to catch their breath. Rub their face in it. Get aggressive. Stand up to BPS bullies. Stand up to BPS manipulation. Mock the BPS research. Turn the BPS crowd into a laughing stock. Give them a taste of stigma, we ate if for decades now it's their turn to eat. HIV/AIDS activists were aggressive, ME need more aggression not less.
 
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