George Monbiot on ME/CFS, PACE, BPS and Long Covid

Sly Saint said:
very noticeable that Simon Wessely is keeping shtum; at least in public.
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Yes, I think SW is very much more savvy at knowing when to stop digging the hole he is in, and more than happy for someone else to do that instead. The notion of a fall guy comes to mind, MS forever emblazoning a public audit trail of all the things that might incriminate him in due course. I don't think MS realises what a high limb his colleagues are only to happy to leave him out on here.
 
Andy said:
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Never. Ever. Attack a journalist armed with facts and a large audience when all you have is DARVO. It never goes well. Other than Tuller, this is the first time they are facing someone who actually does the research and boy are they unprepared for it. They think they can still use thought-terminating clichés and not have those thoughts followed through as usual.
 
rvallee said:
Never. Ever. Attack a journalist armed with facts and a large audience when all you have is DARVO. It never goes well. Other than Tuller, this is the first time they are facing someone who actually does the research and boy are they unprepared for it. They think they can still use thought-terminating clichés and not have those thoughts followed through as usual.
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The other good thing about George Monbiot being involved is that MS probably won't block him, and MS will have to read what Monbiot says.
 
Arnie Pye said:
MS will have to read what Monbiot says.
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True, but MS did block me, and as I found out when he left a comment on VB, he still reads what I write!! But the fact is, I can scream all I want, and the entire Berkeley faculty can scream, and Keith G and Tom K and Brian Hughes and 100+ experts can scream in a letter to The Lancet, and no one needs to pay much attention. But if George Monbiot screams in The Guardian, you have a big, big problem on your hands. And if you poke him back and he keeps at it, you have an even bigger problem.
 
dave30th said:
True, but MS did block me, and as I found out when he left a comment on VB, he still reads what I write!! But the fact is, I can scream all I want, and the entire Berkeley faculty can scream, and Keith G and Tom K and Brian Hughes and 100+ experts can scream in a letter to The Lancet, and no one needs to pay much attention. But if George Monbiot screams in The Guardian, you have a big, big problem on your hands. And if you poke him back and he keeps at it, you have an even bigger problem.
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lets just hope he (GM) doesnt do a Woof
 
dave30th said:
But if George Monbiot screams in The Guardian, you have a big, big problem on your hands. And if you poke him back and he keeps at it, you have an even bigger problem.
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It's also worth bearing in mind that Monbiot is the sort of journalist that a lot of people in the media Establishment would like to attack, so that raises the stakes. Avoiding possible weak points is going to be especially important imo. I think that we're going to be in for a big grubby fight whatever happens with NICE and a lot of powerful people will be keen to use any slips to attack all PACE critics.
 
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dave30th said:
True, but MS did block me, and as I found out when he left a comment on VB, he still reads what I write!! But the fact is, I can scream all I want, and the entire Berkeley faculty can scream, and Keith G and Tom K and Brian Hughes and 100+ experts can scream in a letter to The Lancet, and no one needs to pay much attention. But if George Monbiot screams in The Guardian, you have a big, big problem on your hands. And if you poke him back and he keeps at it, you have an even bigger problem.
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Precisely. Until now the BPS brigade, along with (including ?) the SMC, have always managed to skew the narrative to keep the UK press largely under their control, in their pockets. And as you say David, the UK establishment invariably manages to suppress and pervert the truths that get seen by the wider public, usually by dismissing the credibility of those reporting these things. But George Monbiot is a whole different ball game for them. I suspect and hope that, much like yourself, attempts to discredit and deter him will achieve the opposite, and just motivate him to dig deeper and harder for the truth. Especially when it must be clear to GM that the very thing MS' critics accuse him of - smear campaigning those who criticise him - is exactly what MS then tries doing to GM ... what more proof and motivation does Monbiot need.
 
Sometimes I think about how strange it must be for GM to have had a virus, failed to recover in a timely way, and then come across this entire BPS s-show. And then now to be in a back-and-forth of the kind we are seeing here. Being blamed for spreading LC. It must be surreal for him, particularly if he did not know much about the issues previously. I think he has handled it really gracefully.
 
Esther12 said:
It's also worth bearing in mind that Monbiot is the sort of journalist that a lot of people in the media Establishment would like to attack, so that raises the stakes. Avoiding possible weak points is going to be especially important imo. I think that we're going to be in for a big grubby fight whatever happens with NICE and a lot of powerful people will be keen to use any slips to attack all PACE critics.
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The only thing I have ever doubted about Monbiot is whether the brutally consistent nature of his moral stance sometimes misses realities to do with the messiness of social justice. I have never noticed him pushing stuff with a dubious evidence base. My impression from interacting with him is that he is unlikely to mis-step.

In comparison to the popular press coverage there has been so far Monbiot is a whole new ball game. He may not come out with any ideas that David has not already done justice too but he has an enviable reputation and however much people would like to attack him I suspect most have learnt that it is safer to keep their heads below the parapet.
 
As has been said before here and elsewhere over the years, proper acknowledgement and understanding of the problems pwME face, and have faced for decades, cannot be achieved by any one person, no matter how good they are. A wide spread of influential people need to be exposing the truth in order to reach a wider audience - no one advocate connects with all areas of society. Until now there has been a gaping hole in an absolutely crucial area - honest, insightful and effective ME/CFS coverage in the British press itself. George Monbiot looks like he might be in the process of filling that gap. If so then others might rediscover their professional journalistic courage and also begin to report outside of the SMC's coattails ... something that I'm sure MS and Co. find very worrying. Here's hoping.
 
Invisible Woman said:
Indeed information -scary or otherwise - can have a big impact on patients. It gives them the tools to best manage their condition.
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It doesn't matter if reality is scary or not. It's reality, and denying it doesn't help one bit, and usually makes things far worse. There are very few situations in life when lying to others about hard truths delivers a better (or less worse) result for them.

If I am dying of cancer then damn right I want to know the full story, and pronto. How else can you optimise your remaining choices?

The attitude of people like Garner and Sharpe, et al, is that the bulk of humans are stupid hysterical ninnies, permanently allergic to and terrified of reality,and who have to be guided through life by our superiors using lies and coercion (however sugar coated).
Shinygleamy said:
I think it's because him and his chums have gotten away with outrageous behaviour before and have never been punished for it. It makes a person very sloppy.
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Yep. Until they feel some serious consequences they will keep right on.
lunarainbows said:
Also, is there no other (legal or otherwise) way of getting PACE retracted - given all its flaws? the editors of the lancet don’t agree - but is there no way of making them do it regardless, given what’s actually in PACE?
I fear that as long as PACE (and other papers?) aren’t retracted, this is the kind of pushback and claims we will keep seeing.
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I initially thought PACE should be retracted. But not now. It does contain useful data, that actually tell us something – mainly that the psychosocial approach doesn't provide explanatory or therapeutic power. If anything, PACE disproved the CBT/GET model.
lunarainbows said:
In fact I remember specifically it saying something like, you have nothing to lose and everything to gain.
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Until you are dead there is always something to lose.
Esther12 said:
It so complicated to write a thorough rebuttal for.

I think that one of the ways PACE has fought back is that so many people feel ground down by the process of responding seriously to stuff like this. It's difficult to stay motivated.
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This.
Invisible Woman said:
Much as I would like to see people be personally accountable, I would rather we sought change for how patients are treated and trials are designed. This is also where, right now, we are gaining allies at the moment because it's about science.
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I agree.
Invisible Woman said:
If I recall Valerie also suggested a reconciliation of sorts by way of apology from patients for alleged threats and so on. That's a step too far for me.
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Absolutely opposed to it too. That is an admission of guilt. Under no circumstances should the patient community apologise for things we did not do, or had no knowledge of, and have not been proven to any satisfactory degree.

I have certainly made many harsh criticisms and characterisations of certain people and institutions. But I am also very certain that none of it even comes close to being legitimately classed as genuine harassment and threats.

I think our approach to this should be that whenever those claims are made we should demand – not politely request, demand – a top level formal inquiry into the claims, with full subpoena powers for documents and witnesses.

If the patient community (as opposed to one or two individual patients) has anything substantial to answer for then we should own it and get it over and done with. Partly because that is the right thing to do, but equally so there is one less excuse for the BPSers to avoid scrutiny.

OTOH, if – as I believe – we don't have anything to answer for, then those guilty of grossly defamatory claims of harassment and threats, made entirely in order to avoid proper scrutiny of their shoddy and unethical work, should be exposed and held to proper account.

I don't believe the patient community has anything to fear from such an inquiry. But I am very confident the claim makers do, and will not be too keen on it at all. Watch for all sorts of excuses from them, like we don't want to agitate the patient community any further, it's all in the past, we are prepared to let this go, etc. Probably accompanied by a few tears for show.
 
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Sean said:
Absolutely opposed to it too. That is an admission of guilt. Under no circumstances should the patient community apologise for things we did not do, or had no knowledge of, and have not been proven to any satisfactory degree.

I have certainly made many harsh criticisms and characterisations of certain people and institutions. But I am also very certain that none of it even comes close to being legitimately classed as genuine harassment and threats.
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I agree. Communities don't tend to make apologies because they're so rarely involved in negative actions as a group.

Institutions do, as they are led by a small number of people who make decisions, determine policy, and are responsible for organisational culture. But the loose coalitions of subgroups and individuals that make up patient communities, some of whom aren't even particularly well networked, just don't work like that.
 
Esther12 said:
Seems like more misrepresentation of the HRA from Sharpe: "The criticisms he lists have been investigated and refuted by both the Medical Research Council and the Health Research Authority."
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both David Tuller and Brian Hughes demolish the HRA claim as it didnt vindicate the study but I am trying to work out what he means by refuted by MRC. Is there a reference?
 
Jonathan Edwards said:
The appropriate word would be 'rebutted' rather than refuted I think.
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I can think of other words, mostly insuitable for the forum.

The full letter per the MEA website is very interesting:

"The MRC has recently started (with other research funders) a pilot of a new facility for academic researchers to share data via the Clinical Study Data Request (CSDR) web portal. We hope to include the PACE trial on the CSDR portal within the next 6-12 months. This will allow researchers to apply to the CSDR Independent Review Panel to gain access to the dataset for their own analyses."

Also mentions Cochrane:
"While most of the criticism focuses on the PACE trial, there is a large amount of evidence from other studies that also shows CBT and graded exercise therapy (GET) can be helpful to some CFS/ME patients. Other research groups, using different study designs, have drawn similar conclusions about the benefit of these treatments.

This evidence is summarised in three Cochrane reviews. Cochrane reviews are systematic reviews of primary research in human healthcare and health policy, and are internationally recognised as the gold standard in evidence-based healthcare."

Maybe someone such as @Robert 1973, @Caroline Struthers or @dave30th would like to ask about the availability of the PACE trial data on the CSDR portal.

The letter was written 29 August 2018, so well beyond the next 6-12 months.

But maybe this was before White explained that the only statistician who could access the info had left the hospital.. or someone had lost the key to the filing cabinet..or a dog had eaten the print outs...
 
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