Trisha Greenhalgh on ME/CFS and Long Covid

I like the idea of using social media with simple messages that are easy to digest that expose the BPS nonsense (e.g medicine not mindfulness, science not snake oil, etc. etc). Sure ME is a bit tricky to explain, but I don’t think we need to go there. Victimisation isn’t difficult to understand and it feels like an awareness campaign to ride on the back of the revised nice guidelines being issued adds weight to the significance of the change. A positive spin at the end would be the genetic research.
 
I have a feeling that patients sounding off and being belligerent just now may not be such a bad thing.

After all, what is it that TG is saying? She is saying:

'If only all these ME activists stopped being aggressive and unreasonable and recognised that all they need to do is go away and do some positive thinking and get better like my friend Paul Garner did from his Long Covid, then we could focus on all these aggressive and unreasonable activists with 'Long Covid' who really just need to go away and do some positive thinking... oh, um, no, did I say that?'

I think there is an argument for raising the profile of the debate with a massive Twitter slanging match because the more the general public and the press see of this the more they are likely to twig that the unholy alliance of Gerada, Greenhalgh, Garner, Vogt, Larun, Sharpe, Wessely, Fox, Wyller, Cochrane... is just a disinformation jamboree. And then people may well raise that the anger and frustration expressed by patients is entirely justified.
 
I agree we shouldn't let Greenhalgh, Gerada, and others get away with their nonsense.

I think a blitz of tweets that state and/or link really good information would be worthwhile. That could include quotes from the draft guideline, links to Jonathan Edwards' evidence to NICE, the training module by Nina Muirhead, Dialogues for a Neglected illness videos etc.

What we need to avoid, I think, is gratuitously offensive personal attacks on individuals, and claims about biomedical findings that are only preliminary and may not replicate.

Edit to add. I've just read Vink and Vink-Niese's latest article, discussed here
It is short, easy to read, and summarises evidence that GET (and CBT) is ineffective and harmful for pwME, and also mentions long Covid and the importance of future research using objective outcome measures. It would be a good one to link in tweets.
 
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Jonathan Edwards said:
think there is an argument for raising the profile of the debate with a massive Twitter slanging match because the more the general public and the press see of this the more they are likely to twig that the unholy alliance of Gerada, Greenhalgh, Garner, Vogt, Larun, Sharpe, Wessely, Fox, Wyller, Cochrane... is just a disinformation jamboree. And then people may well raise that the anger and frustration expressed by patients is entirely justified.
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Maybe what could complicate this enterprise is that TG seems to be on the right side with regards to the pandemic, masks etc. So perhaps calling out her bad arguments with regards to ME/ 'LC' would need to include a phrase of appreciation for her stance on measures againts the pandemic?
 
MSEsperanza said:
Maybe what could complicate this enterprise is that TG seems to be on the right side with regards to the pandemic, masks etc. So perhaps calling out her bad arguments with regards to ME/ 'LC' would need to include a phrase of appreciation for her stance on measures againts the pandemic?
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I am not aware of TG being particularly active on the 'right side' beyond what is glaringly obvious to any sensible person - i.e. wearing masks. Anything she has said pales in comparison to Independent SAGE.

Trish said:
What we need to avoid, I think, is gratuitously offensive personal attacks on individuals, and claims about biomedical findings that are only preliminary and may not replicate.
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I agree that it is good to avoid unsubstantiated biomedical claims, although it is hard to blame people since these have been fed to the patient community by the medical profession.

Can you gratuitously offend someone who has already been gratuitously offensive? Maybe yes, but these people's behaviour really is appalling from a medical professional point of view.
 
Jonathan Edwards said:
I have a feeling that patients sounding off and being belligerent just now may not be such a bad thing.

After all, what is it that TG is saying? She is saying:

'If only all these ME activists stopped being aggressive and unreasonable and recognised that all they need to do is go away and do some positive thinking and get better like my friend Paul Garner did from his Long Covid, then we could focus on all these aggressive and unreasonable activists with 'Long Covid' who really just need to go away and do some positive thinking... oh, um, no, did I say that?'

I think there is an argument for raising the profile of the debate with a massive Twitter slanging match because the more the general public and the press see of this the more they are likely to twig that the unholy alliance of Gerada, Greenhalgh, Garner, Vogt, Larun, Sharpe, Wessely, Fox, Wyller, Cochrane... is just a disinformation jamboree. And then people may well raise that the anger and frustration expressed by patients is entirely justified.
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I think the other thing here is that the controversy may mean that the Government/politicians cannot support them (fund their research) i.e. ---Gerada, Greenhalgh, Garner, Vogt, Larun, Sharpe, Wessely, Fox, Wyller, Cochrane...

If they are getting strong community support then the Government may be inclined to fund some of their research --- for those nutty people who have fatigue or some such-- If the masses are revolting then the Government should get the hint that this is not the bandwagon to jump onto.

With ME they managed to pull off the coup that people with ME were dangerous activists.
 
MSEsperanza said:
Maybe what could complicate this enterprise is that TG seems to be on the right side with regards to the pandemic, masks etc. So perhaps calling out her bad arguments with regards to ME/ 'LC' would need to include a phrase of appreciation for her stance on measures againts the pandemic?
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Yip I was reprimanded, by my significant other, when I relayed concerns [from this forum] about TG --- TG promoted the use of face masks ----. To be fair the concerns about TG [on social media] have now been acknowledged.
 
Jonathan Edwards said:
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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Case in point: I don't know why Clare Gerada is rushing to reply to tweets about her claims on the BBC Breakfast program, if she didn't think this could affect her reputation? (ETA: for context, see the thread on Paul Garner and long Covid).
Susan Bewley is Professor Emeritus of Obstetrics & Women's Health at King's College, and winner of the BMJ award 'speaking truth to power'.

 
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full transcript of what Clare Gerada said here:
https://www.s4me.info/threads/paul-...me-cfs-bmj-articles.15629/page-20#post-320517
CG:
as I got better I did what many people in my position do, I thought I was superhuman and started running. I did my usual 5km and even 10km
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CG:
And yes Paul’s inspiring. Try and change those thoughts around into what you can do rather than what you can’t do.
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like say diving in Grenada or military assault course training(?)
 
Putting in the 'in moderation' is irrelevant. Bewley misses the point completely.

I was recently told that to stay free of stroke I needed to exercise until I was really short of breath and had a racing heart. In other words it would only work if more than 'in moderation'. It had to be full on.

And in other conditions the situation is different - in fact it is probably different for every situation. The problem is when self-appointed medical mouthpieces with an agenda to grind put out bullshit blanket statements, with or without meaningless caveats. The problem is the medicine requires a bit if detail and skill, not just tub-thumping.
 
Moderate exercise is just as bad for ME as any other. There is no blanket level of exercise that is good or bad for people with ME. The point they do not seem to be able to comprehend is that a person with ME must keep exertion under a varying limit that would cause damage to their body.

So any "treatment" using exercise must be to teach the patient how to do that. We want to be as active as possible while reducing PEM and most patients need to learn how to do less rather than more.

This is the opposite to GET where external levels are used whether they be low level, moderate or extreme.
 
I can't find the post again, sorry but someone said they are feeling angry these days. I feel like that too and I realised it is because these people are showing so much ignorance of what ME means.

They make statements about us, make decisions and decide what is important but they do not know anything!

How can anything they say be relevant if they think I suffer from fatigue alone with no nod to the other things which a forum like this has shown we share for the most part?

It is obvious they either read nothing about ME except papers from their friends or they deliberately lie and hide what they have seen.
 
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