Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

Utsikt said:
There are ~2500 posts in this thread, so reading everything might be difficult.
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Most posts are quite short and I'm not saying you have to read everything, but I reckon once you start you won't be able to stop.
Bearing in mind that at the beginning PG was seen as an advocate for pw Long Covid and an ally of the ME community........

It looks as though XF thinking about/trying to come up with an AI thread summary add-on. So one to look out for. Could be very useful.
AI generated Thread Summary, Tags, Prefix, SEO Meta, Thread cover, etc. | XenForo community
 
A Sussex and Kent ME/CFS Society Medical Officer (Dr Alan Stewart) praises the BMJ Article that was co- written by another Sussex ME/CFS Society Medical Officer (Dr Alastair Miller).

According to Dr Stewart, avoiding patients becoming under-stimulated is a prime concern, and he appears to blame non-recovery on the patients' inadvertent, unwise and unhealthy choices.



Sussex Society News 19th May 2025 : .....

'Patients with severe ME/CFS need hope and expert multidisciplinary care'

'Dr Alan Stewart says:

“This is a timely and useful opinion piece from acknowledged experts in the field who rightly emphasise the need for an individualised and focused approach especially for severe and very severe patients who are likely to need assistance from a number of specialists. Though the NHS Sussex ME/CFS service is not able to support such patients we are all well aware of the need to remain positive and avoid patients being under-stimulated and inadvertently making unwise and unhealthy choices that delay recovery.“

https://measussex.org.uk/patients-with-severe-me-cfs-need-hope-and-expert-multidisciplinary-care-2/





The Sussex Society's News on the 15th of May emphasises 'Reframing beliefs about illness' and provides the link to the BMJ Opinion piece, plus photos.

'Patients with severe ME/CFS need hope and expert multidisciplinary care Reframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS, write Alastair Miller, Fiona Symington, Paul Garner, and Maria Pedersen.'

https://www.bmj.com/content/bmj/389/bmj.r977.full.pdf

https://measussex.org.uk/patients-with-severe-me-cfs-need-hope-and-expert-multidisciplinary-care/


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Trish said:
Since when was Paul Garner an acknowledged expert in the field...
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If the Sussex ME/CFS Society members get most of their information from the Society - they may not know any better. If they are more widely informed, why do they remain members of a Society/Patient Group/Charity that promotes mind over matter ideology/'Reframing beliefs' about such a devastating illness.

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Trish said:
Since when was Paul Garner an acknowledged expert in the field...
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Hey, he is a very highly acknowledged expert in the field, according to another expert in the field. You wouldn't know him, goes by Paul G. "No relation".
y1IgXP0TMZyLzg7U_r2XRvcRfpsmeQ6xXjth691wQJU.jpg
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Paul Garner is busy again - on Mr B's Linked In.

3rd+3rd+Emeritus Professor at Liverpool School Tropical MedicineEmeritus Professor at Liverpool School Tropical Medicine6d •
  • 6 days ago • Visible to anyone on or off LinkedIn

    NICE ME/CFS guidance 2022 is contested, and I can see why. It misleads and I believe does harm. It's terrible for people with severe ME/CFS, but to put them to bed in a dark room,and ban them from any cognitive approaches to help recover is wrong in my book. Recovery Norway is full of people who have recovered from mind-body retraining packages and cognitive approaches. There are recovery stories everywhere


    For good measure he adds

    upload_2025-6-5_12-11-19.jpeg

13 likes, 1 positive comment, 1 share

edit: Paul Garner has 3010 followers on Linked In
edit: apologies. I think there were 3ish comments, now 4
 
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Binkie4 said:
Paul Garner is busy again - on Mr B's Linked In.

3rd+3rd+Emeritus Professor at Liverpool School Tropical MedicineEmeritus Professor at Liverpool School Tropical Medicine6d •
  • 6 days ago • Visible to anyone on or off LinkedIn

    NICE ME/CFS guidance 2022 is contested, and I can see why. It misleads and I believe does harm. It's terrible for people with severe ME/CFS, but to put them to bed in a dark room,and ban them from any cognitive approaches to help recover is wrong in my book. Recovery Norway is full of people who have recovered from mind-body retraining packages and cognitive approaches. There are recovery stories everywhere


    For good measure he adds

    View attachment 26421

13 likes, 1 positive comment, 1 share
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These statements have the potential to really cause harm.

Especially for the very severe who end up in hospital. Because of his eminence people will take him seriously.

Severe patients in hospital could be confronted with healthcare workers who insist on opening curtains or remove blindfolds or ear protection, for example.
 
Recovery Norway is full of people who have recovered from mind-body retraining packages and cognitive approaches. There are recovery stories everywhere

So why are they not showing up in treatment studies, including those done by your fellow travellers (the studies they could be bothered to make even a half-arsed attempt at doing properly and interpreting honestly)?

If there is so many miraculously recovering from the bed-ridden brink of death with this approach, then it should be stark and indisputable in the data. Yet they are not even showing up in studies on the mild-moderate patients (which is most studies), let alone on the severe-very severe.
 
Trish said:
We had a discussion about AI generated summaries recently. There was considerable objection to our posts being used in this way.
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I was thinking more of a thread summary tool useable by members as and when, that could just list the threads main 'highlights', eg in this instance listing Garners 'output' in chronological order, not peoples comments or opinions.
 
Binkie4 said:
Paul Garner is busy again - on Mr B's Linked In.

3rd+3rd+Emeritus Professor at Liverpool School Tropical MedicineEmeritus Professor at Liverpool School Tropical Medicine6d •
  • 6 days ago • Visible to anyone on or off LinkedIn

    NICE ME/CFS guidance 2022 is contested, and I can see why. It misleads and I believe does harm. It's terrible for people with severe ME/CFS, but to put them to bed in a dark room,and ban them from any cognitive approaches to help recover is wrong in my book. Recovery Norway is full of people who have recovered from mind-body retraining packages and cognitive approaches. There are recovery stories everywhere


    For good measure he adds

    View attachment 26421

13 likes, 1 positive comment, 1 share

edit: Paul Garner has 3010 followers on Linked In
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These so-called treatments are not “banned” though. They were evaluated, found to be without merit, and are not recommended.

I suppose LinkedIn doesn’t allow “community notes” like X

It would be good if NICE could slap him down somehow for misusing their name. Or the School of Tropical Medicine.

he’s really only playing to the court of public opinion. Could be something for Social Media activists to take up.

Your regular reminder that, if PG pops up and you feel distress, you can calm your system by breathing and repeating “Professor Chris Ponting and DecodeME exists” until it passes.
 
Binkie4 said:
Paul Garner is busy again - on Mr B's Linked In.

3rd+3rd+Emeritus Professor at Liverpool School Tropical MedicineEmeritus Professor at Liverpool School Tropical Medicine6d •
  • 6 days ago • Visible to anyone on or off LinkedIn

    NICE ME/CFS guidance 2022 is contested, and I can see why. It misleads and I believe does harm. It's terrible for people with severe ME/CFS, but to put them to bed in a dark room,and ban them from any cognitive approaches to help recover is wrong in my book. Recovery Norway is full of people who have recovered from mind-body retraining packages and cognitive approaches. There are recovery stories everywhere


    For good measure he adds

    View attachment 26421

13 likes, 1 positive comment, 1 share

edit: Paul Garner has 3010 followers on Linked In
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Wow talk about inaccurate....

For a start it's NICE 2021 not 22, if you cant even get the date right...

And, quite apart from anything else, it is morally wrong to present it as if NICE as saying "keep people in bed in a dark room, tube feed, free from light or strong smells"? That presents it as if NICE is saying that people should be held in a dark room instead of being let out into the light! Disingenuous, grossly so & obviously designed to mislead.

The exact quote is this

1.17.2
Recognise that symptoms of severe or very severe ME/CFS may mean that people:

  • need a low-stimulus environment, for example a dark quiet room with interaction at a level of their choice
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The whole guideling makes it very clear that PwME/CFS should be allowed to be in an environment which causes them the least symptoms. IT recognises that what we say we need, we may actually, in fact, need. What a shocker!

With that info graphic its presented as if they are telling doctors to advise or enforce darkness & inactivity, as if NICE suggests it should be enforced.
He may as well have said that NICE advises keeping patients locked in a dungeon, fed only by a tube.

(Edited to add not to mention his use of the phrase "and ban them from any cognitive approaches" As if loads of PwME/CFS were crying out desperately for these approaches and being prohibited, banned from attempting them. Perhaps NICE have taken on a law enforcement arm that we're not aware of! )

Its a grotesque twisting & misrepresentation of what the GL says.
 
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JemPD said:
Wow talk about inaccurate.... For a start it's NICE 2021 not 22, if you cant even get the date right...

And, quite apart from anything else, it is morally wrong to present it as if NICE as saying "keep people in bed in a dark room, tube feed, free from light or strong smells"? That presents it as if NICE is saying that people should be held in a dark room instead of being let out into the light! Disingenuous, grossly so & obviously designed to mislead.

The exact quote is this

The whole guideling makes it very clear that PwME/CFS should be allowed to be in an environment which causes them the least symptoms. IT recognises that what we say we need, we may actually, in fact, need. What a shocker!

With that info graphic its presented as if they are telling doctors to advise or enforce darkness & inactivity, as if NICE suggests it should be enforced.
He may as well have said that NICE advises keeping patients locked in a dungeon.

Its a grotesque twisting & misrepresentation of what the GL says.
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We have to hope that, because it’s so badly made and outlandish, that people go ???? eh ???? When they see it
 
Paul Garner said:
ban them from any cognitive approaches to help recover is wrong in my book
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I don't understand how otherwise serious people don't cringe and discredit him over blatant lies like this. Nothing has been banned for anyone, and everyone with the tiniest awareness of what the issues are here know this. Yet they find nothing wrong with Paul G lying his ass off about it, because they want it to be recommended, but they know nothing has been banned, and that those recommendations are still being made despite the evidence showing otherwise.

I mean there are dozens of CBT apps. It's free! There are many grifters out there selling their packages, but all of this is just as free as a pet rock.

He might as well be claiming we do satanic rituals and other weird nonsense and it wouldn't be any different. Or, I guess, that we're so dangerous he would feel safer in a war zone. One lie leads to the other leads to the other leads to the others.

images
 
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