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

Sean said:
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.
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Honestly we are one layer removed here from blaming aliens or lizard people. Dozens of anecdotes exist. Dozens! Out of thousands, but if you don't count that it sounds more impressive. So why is it not showing in the evidence? Has to be: witches, aliens, Illuminati, maybe all of them. It's a giant conspiracy!

Then again, the widely accepted belief in the medical profession is that there exist very disabling "disorders" for which fully effective cures exist and millions of people just choose not to because, uh, reasons, so it's not as if sanity or reason are much of a concern here.
 
MrMagoo said:
We have to hope that, because it’s so badly made and outlandish, that people go ???? eh ???? When they see it
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The medical profession is obsessed with blaming TikTok and other nonsense for problems caused by COVID even though, you know, ye olde germ theory of disease.

So I don't think that's happening. We can't reason people out of a position they did not reason themselves into. This is the exact same problem as any other conspiracy fantasy community. They decided their truth, and make whatever facts fit as they need them to, even if many of those facts are mutually contradictory.
 
Ignoring him is the best policy.
The second best would be poking fun at what he claims, ideally with a meme generator.
Does he have a MEPedia entry? A regularly updated list of his, erm, “expert opinions” would be good. Typically these things do become more outrageous and unbelievable.
 
MrMagoo said:
Ignoring him is the best policy.
The second best would be poking fun at what he claims, ideally with a meme generator.
Does he have a MEPedia entry? A regularly updated list of his, erm, “expert opinions” would be good. Typically these things do become more outrageous and unbelievable.
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I wish we could have a fact-check team that would confront his untruths.
 
@MrMagoo wrote: .... "he’s really only playing to the court of public opinion. Could be something for Social Media activists to take up."

Paul Garner closes his twitter/X posts to comment, or only allows comments by those he chooses/has not blocked. So he actively obstructs public disagreement with his frequently inaccurate tweets.

.
 
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Lou B Lou said:
@MrMagoo wrote: .... "he’s really only playing to the court of public opinion. Could be something for Social Media activists to take up."

Paul Garner closes his twitter/X posts to comment, or only allows comments by those he chooses/has not blocked. So he actively obstructs public disagreement with his frequently inaccurate tweets.

.
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No matter, all you need is a meme to go viral. He doesn’t need to see it/have it on his account. It just gives the non-Paul believers a chuckle and let’s people know he’s not all that.
 
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
edit: apologies. I think there were 3ish comments, now 4
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This steps way beyond the bounds of what I feel is appropriate for someone with his qualifications vs what his bio infers and doesn’t declare conflicts of interest

it seems like it’s a lightening process sales talk from someone whose only connection to the illness itself is at best being friends with those making money from it or with certain beliefs. Either that or it would just be propaganda for his views on severe me and those with it? Either way the ‘hope’ bit is a word for a marketing promise? I say this as it’s not far off the content of the Phil parker dark cloud slides he released just after the guidelines ‘chose not to recommend LP’.

He’s a man who has never experienced me/cfs, certainly not severe me/cfs and has no expertise as a clinician or researcher in the condition. And not one who is taking on responsibility for being careful what he recommends is done so with clear informed consent info re it not causing harm or being clear on risk or what they don’t measure which I thought would be /should be required as part of their professional membership/regustration. He’s pushing it as if it’s a crusade. To bring back the old ideas etc

if it was a tv programme it would have to come with a product placement thing wouldn’t it?

I can’t remember where things got left on eg drug or medical devices sales and the regs on those (and remember a number of years ago things got changed to stop kickbacks etc of some kind) but given the model of lightening process when people become trainer etc I’m curious how it /those types of things fits into to where those are at.

I wonder does the recovery Norway set-up in part ‘skirt’ the obviousness of this by claiming it was ‘just’ about ‘celebrating recovery’ when actually is it mostly only those saying they ‘recovered by’ these certain programmes? And is it set up by those involved in or pushing said programmes?
 
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Utsikt said:
I think we should allow him to dig his own grave on LinkedIn. His writing is so unprofessional and unhinged that it’s embarrassing to read it on what is supposed to be a professional networking platform.
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It would be useful if LinkedIn shows the ‘direct connections/conflicts of interest’ because it does have a feature of something like ‘people linked to this person’ on certain pages.

I don’t know whether eg if someone does a post about x company’s product that would go as far as showing how many of their ‘contacts’ work at that company tho?
 
bobbler said:
This steps way beyond the bounds of what I feel is appropriate for someone with his qualifications vs what his bio infers and doesn’t declare conflicts of interest

it seems like it’s a lightening process sales talk from someone whose only connection to it is at best being friends with those making money from it. Either that or it would just be propaganda for his views on severe me and those with it? Either way the ‘hope’ bit is a word for a marketing promise? I say this as it’s not far off the content of the Phil parker dark cloud slides he released just after the guidelines ‘chose not to recommend LP’.

He’s a man who has never experienced me/cfs, certainly not severe me/cfs and has no expertise as a clinician or researcher in the condition. And not one who is taking on responsibility for being careful what he recommends is done so with clear informed consent info re it not causing harm or being clear on risk or what they don’t measure which I thought would be /should be required as part of their professional membership/regustration. He’s pushing it as if it’s a crusade. To bring back the old ideas etc

if it was a tv programme it would have to come with a product placement thing wouldn’t it?

I can’t remember where things got left on eg drug or medical devices sales and the regs on those (and remember a number of years ago things got changed to stop kickbacks etc of some kind) but given the model of lightening process when people become trainer etc I’m curious how it /those types of things fits into to where those are at.

I wonder does the recovery Norway set-up in part ‘skirt’ the obviousness of this by claiming it was ‘just’ about ‘celebrating recovery’ when actually is it mostly only those saying they ‘recovered by’ these certain programmes? And is it set up by those involved in or pushing said programmes?
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I suspect that there are worse snake oil sellers on Insta and TikTok making much more outlandish and unfounded claims.
I notice a reference to helping “some” people on his little slide, that “some” is doing heavy lifting.
 
JemPD said:
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.
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Grossly defamatory, even.

MrMagoo said:
We have to hope that, because it’s so badly made and outlandish, that people go ???? eh ???? When they see it
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Utsikt said:
I think we should allow him to dig his own grave on LinkedIn. His writing is so unprofessional and unhinged that it’s embarrassing to read it on what is supposed to be a professional networking platform.
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Increasingly my view that Garner is likely to be a self-limiting problem. He is trashing his reputation far faster and more comprehensively that his critics could ever do.

bobbler said:
He’s pushing it as if it’s a crusade.
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He has become an evangelical fanatic, which rarely ends well.
 
Chestnut tree said:
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.
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JUst because I have the MEAction 2019 survey report to hand: Your experience of me services

and spotted this (page 5):

"79.2% respondents had been given advice on how to manage activity levels whilst at their clinic.

● The most common advice that respondents had been given was to find a sustainable level of daily activities and increase activities week by week (52.6%). Only 10% of respondents who had received advice said this would have been helpful with hindsight.

● A third (33.7%) had been told to adapt/decrease their activities to a sustainable level, with hindsight 62.9% said this advice would have been useful.

● Just 2.8% had been told to rest, however 26.7% of those given advice thought this would have been most helpful in hindsight.

● 10.8% of respondents had been told that exercise would help them recover and they should immediately start on a programme of increasing exercise. In hindsight, only 0.4% of respondents said this would have been helpful. "
 
We are now in a post-truth society, where NICE 206 guidelines 2021 have been issued - but largely ignored by the NHS and an Emeritus Professor of Epidemiology is campaigning against against all edged harm they’re causing.

Honestly, it makes me feel like the neglected child ignored by the divorced parents who are arguing (that the Drs blamed for causing my ME)
 
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