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

Andy · Apr 19, 2021

Double Down News have just reshared this (this time with an amended title, with Syndrome added to Chronic Fatigue).

https://twitter.com/user/status/1384069768227917834

Sean · Apr 20, 2021

The HRA report in no way exonerates or supports PACE. All it says is that PACE ticked the legal, administrative, and ethical boxes as they existed at the time.

It is not anything for PACE to hang their science on. The HRA couldn't have made that any clearer within the context and system.

Their statements about the report's limits is the important part of that document. It was sending an explicit message to the PACE crowd that they could not use this document to dismiss technical criticism of their methodology.

PACE authors misrepresenting what the report actually said or didn't say can't be blamed on the HRA.

Esther12 · Apr 20, 2021

Sean said: ↑

The HRA report in no way exonerates or supports PACE. All it says is that PACE ticked the legal, administrative, and ethical boxes as they existed at the time.

It is not anything for PACE to hang their science on. The HRA couldn't have made that any clearer within the context and system.

Their statements about the report's limits is the important part of that document. It was sending an explicit message to the PACE crowd that they could not use this document to dismiss technical criticism of their methodology.

PACE authors misrepresenting what the report actually said or didn't say can't be blamed on the HRA.
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I really disagree with that. My reading is that the HRA's 'report' was designed to support PACE as much as it could. To me, it read like a PR project and I think there's a lot of spin in it.

DokaGirl · Apr 20, 2021

JemPD said: ↑

Garners comment on the article (copied from @Invisible Woman 's post at top of page)

Oh well then, best not let anyone know that cancer can kill you, that must surely make them more likely to die. Oh wait, no that was debunked...

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So no scary info on cigarette packs then? No other health warnings about anything? No health and safety info? No warnings about operating heavy equipment after taking certain drugs? Apparently, shouldn't warn people about anything because this will cause negative outcomes.

DokaGirl · Apr 20, 2021

lunarainbows said: ↑

@Barry from my experience, as I just went back through my emails at the time - I had said that I was very unwell and described my symptoms when I had to drop out of the trial I was on. They said that it’s important I keep practising the techniques, take a rest period and then come back when I’m feeling better. So I think that their expectation is that people will feel worse - “setbacks” - but that’s totally normal and actually an opportunity to practice techniques. It’s not considered a harm. In a similar way as how the “pacing up” kind of CBT expects you to push at your envelope and rest afterwards. And if you overdo it beyond that - well - not much to be done. They wanted me to come back later and I agreed to it. Then I seem to have emailed them some time later, saying I could not talk, had to eat lying down and cannot eat unless someone helps me. They said they were sorry to hear that and hoped that my health improve soon. Nothing about this being recorded as a harm.
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Their response is shocking. Is there no follow up requirement written into these studies? Apparently not! Where are the ethics committees on this?

DokaGirl · Apr 20, 2021

Barry said: ↑

To me this is very significant, being told during a trial that feeling worse is normal ... but normal for what! That very advice presumes the problem to be deconditioning, a presumption, nothing more. Being told to presume a symptom is normal, and you should persevere with a treatment that may in fact be harming you, is way beyond incompetence, it is more like medical negligence.

The PACE manuals actually make statements that confirm this expectation bias inbuilt into the trial (Participants GET manual in this example):

How could they possibly have said this, in writing, when the trial itself is supposed to be trialling the veracity of their claims! Especially when considering harms. It's utterly shameful, yet the investigators seem to have no capacity for shame.

It is akin to someone on antibiotics reporting a skin rash, and the doctor telling them this is normal and to persevere with taking the antibiotics.

It this stuff wasn't so serious it would be utterly hilarious ... it's certainly farcical. Medical school Christmas pantomime stuff, if they do such things.

And because I think it is so important to not be overlooked, I'm going to repeat myself:

Being told that feeling worse is normal with GET and CBT-a-la-PACE, shows that expectation bias was inbuilt into the PACE trial design right from its inception, because how else could you otherwise presume that worsening symptoms were normal!
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How far does this definition of normal go? How dire do symptoms have to be? Many pwME have tachycardia with exertion, or feeling faint. Were they urged to just keep going?

DokaGirl · Apr 20, 2021

Invisible Woman said: ↑

That sort of thing does happen, though. All the time. On multiple occasions in my life I have had relatively minor adverse reactions to medication, including it making the symptom I was prescribed it for worse, only to be blithely told that it's extremely unlikely and to carry on.

I know from conversations with other forum members & friends and family I am not the only one this has happened to. This isn't that rare.

The snag here is the assumption that the pwME's body will respond to exercise in the same way a healthy body would.

If you are training up for a seasonal sport, or you have had several months out for injury or whatever, getting fit can hurt. It can also build in levels so it's painful for a bit and your fitness levels come up and you push to the next stage and so on.

The thing they fail to take into account is that it feels completely different to a deconditioned body getting fit again. I have done both - they are not the same thing at all.

If they had listened to patients they woukd have quickly realised this. This is possibly the drawback of some physios. Patients who need physio after certain injuries and surgeries often have to exercise through some level of pain. I have friends who have cheerfully cursed their physio while acknowledging if they hadn't pushed them they might not have regained full function. However, injury or surgery aside their bodies reaction was normal, ours is not.
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About reactions to prescriptions and dismissal of side effects - absolutely and totally correct. Repeatedly the case.

DokaGirl · Apr 20, 2021

Barry said: ↑

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.
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I too am hoping, despite living in the frozen North. We need this kind of coverage here! Fortunately, we can read George Monbiot's articles online. May others soon follow his leadership.

Hutan · Apr 20, 2021

Posts on the topic of access to PACE trial data have been moved to
https://www.s4me.info/threads/pace-trial-data.2337/

Wyva · Apr 20, 2021

So this probably isn't new information to many of you but it was to me because I didn't really know who George Monbiot was before the Michael Sharpe incident. Very recently I also saw him in the documentary Seaspiracy as one of the people sharing their opinion on the subject of industrial fishing and its dangers to marine wildlife. So I looked him up on Wikipedia and this is what I found:

Working as an investigative journalist, he travelled in Indonesia, Brazil, and East Africa. His activities led to his being made persona non grata in seven countries[17] and being sentenced to life imprisonment in absentia in Indonesia.[18] In these places, he was also shot at,[19] beaten up by military police,[19] shipwrecked[19] and stung into a poisoned coma by hornets.[20] He came back to work in Britain after being pronounced clinically dead in Lodwar General Hospital in north-western Kenya, having contracted cerebral malaria.[21]

He joined the British roads protest movement and was often called to give press interviews; as a result he was denounced as a "media tart"[22] by groups such as Green Anarchist and Class War. He was attacked by security guards, who allegedly drove a metal spike through his foot, smashing the middle metatarsal bone. His injuries left him in hospital.[23] Sir Crispin Tickell, a former United Nations diplomat, who was then Warden at Green College, Oxford, made the young protester a Visiting Fellow.[24]
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OK, now I see why you are saying that a bunch of psychiatrists are unlikely to scare him. I'm impressed.

Barry · Apr 20, 2021

Sean said: ↑

The HRA report in no way exonerates or supports PACE. All it says is that PACE ticked the legal, administrative, and ethical boxes as they existed at the time.

It is not anything for PACE to hang their science on. The HRA couldn't have made that any clearer within the context and system.
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The fact MS tries to use it as a justification for their science, shows just what wafer thin ice he knows they are on.

EzzieD · Apr 20, 2021

Wyva said: ↑

So this probably isn't new information to many of you but it was to me because I didn't really know who George Monbiot was before the Michael Sharpe incident. Very recently I also saw him in the documentary Seaspiracy as one of the people sharing their opinion on the subject of industrial fishing and its dangers to marine wildlife. So I looked him up on Wikipedia and this is what I found:

OK, now I see why you are saying that a bunch of psychiatrists are unlikely to scare him. I'm impressed.
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Wow, I didn't know all that about him either. Now there's someone who has experienced real threats and abuse, which makes the BPS crowd's whiny claims of threats and abuse from very ill, incapacitated patients look even sillier than they already do. GM is indeed an impressive guy.

Sean · Apr 20, 2021

Monbiot also had prostate cancer and a full prostatectomy, and then COVID and Long Covid.

I doubt there is much left in this world to intimidate him.

Barry · Apr 20, 2021

Sean said: ↑

Monbiot also had prostate cancer and a full prostatectomy, and then COVID and Long Covid.

I doubt there is much left in this world to intimidate him.
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f*** a d***!!!

DokaGirl · Apr 20, 2021

Barry said: ↑

f*** a d***!!!
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Even though Canada doesn't share as many Britishisms as some other countries do, we do share this one @Barry.

Amw66 · Apr 20, 2021

I wonder if GM has any idea re state of paediatric research and what families go through.
That's a whole different ball game.

MEMarge · Apr 21, 2021

Maybe @Jonathan Edwards could put GM in touch with Nigel Speight or provide a link with the radio program, was it File on 4, @Sly Saint.

Suffolkres · Apr 21, 2021

Amw66 said: ↑

I wonder if GM has any idea re state of paediatric research and what families go through.
That's a whole different ball game.
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Very good and welcome suggestion.

DokaGirl · Apr 22, 2021

If talking about ME, infects others with this "psychological ailment", why has no one around me, for the 3 decades I've had this, developed ME?

Hutan · Apr 22, 2021

Posts relating to a first hand account of participating in a BPS trial have been moved here:
Reports from participants in GET and CBT trials

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

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