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

Thanks @Tom Kindlon ... if you take it at face value he has had a taste of it hasnt he? But he was apparently not chronic, just medium term/moderately affected. Then he met that LP pyramid salesman and has apparently become phobic towards his own condition.

But assuming he was not selling us a dummy from the get go and/or slipped a wad by nefarious insurance PR people, he comes across as confused even in recent interviews and it reminds me of a phase I went through when undiagnosed when I was using Buddhist transformative tantra and NLP and all kinds of mad assed new age BS etc, a lot, to iron out negative thoughts and try to keep an even keel. It worked really well and I was surprised at how labile my mind was and how effective meditation practices were and concluded my experience of life was shaped by my belief, just like LP, not realising that this lability including euphoria was due to an altered state, possibly due to inflammation in my brain causing the lability and euphoria and a degree of sensory hypersensitivity.

What I didnt understand was that it was not sustainable.

I had no advice from anyone so when a crisis arrived I kept going and going like the energiser bunny, convincing myself of my own indestructibility until I ran out of steam, broke down physically and mentally and was suddenly really ill. I think I had always been that ill but was running on borrowed time/energy/adrenalin through self hypnosis and then it ran out.

All this time I had recurring virus episodes but just tried to put them out of my mind and "soldier on". It took about three years to begin to recover from that disaster during which time I did voluntary work and took things much more gently. At some point it dawned on me how bent out of shape my belief system had become to try to keep my body moving and I knew it didn't make sense. But it took a total of 9 more years to get a diagnosis when it finally all fell into place and I realised how delusional I had been and why.

I am just saying he may believe what he is saying, it could be due to the illness and he may be living beyond his means on borrowed time, or he may have been lucky to recover from medium term long covid at around the same time he met with LP purely by coincidence. Either way I expect it will take a while for him to sort himself out and the best we can do is shrug and move on. Like poor Emily Wilcox I expect this story will rumble on, exemplifying the pressures which create denial.

LP is not plausibly a cure and never will be. If you were a psychologist trying to ham up longcovid and sell PWME and the media a dummy recovery you would not pick LP as your panacea. I think its too shambolic to be a deliberate con.
 
My apologies if this has been shared on other threads. The article is a few days old and the first part is about Long Covid and the illness in children. But towards the end Paul Garner appears.

Manchester Evening News The kids who have had Covid for a years and the war against a sickness timebomb

Quote:
It was like, he said, being ‘possessed by a demon’. If he walked too far, he got ill, if he had too much sugar, he lost momentum. His life became a daily battle, aided by spreadsheets and symptom-checker charts to find just the right balance to keep long Covid at bay. He feared he would be ‘ill forever’.

But then he experienced what he describes as a ‘lightbulb moment’.

“It was a realisation that I could actually modify what I was experiencing with conscious thought," he says.

Prof Garner is keen to stress he’s speaking only from his experience and he’s not saying that these sensations of fatigue or body aches are ‘in your head’ . But he argues there are ways of influencing the way you feel.

Paul says by learning techniques and approaches used by some ME patients to ‘focus on recovery’, he began to believe he could get better and that he had some control over what was happening to him.

“When I got symptoms I took my mind off to something else, some beautiful paradise. It’s to do with neuroplasticity, to get yourself out of recurrent catastrophic thoughts about recovery.

“It’s a chronic fatigue syndrome. The mind and body are one organ.”

Prof Garner says the virus initially triggers exhaustion as the body tries to signal to stop you doing too much so you recover.

In long Covid, argues Dr Garner, the body continues to ring ‘false fatigue alarms’ to get you to rest and that you have to find ways to ‘put them into context to push them out’.

“You can’t allow them to take over and shut you down," he adds.

His approach has included looking positively at his life, doing things he enjoyed, stopping himself from thinking catastrophically about the future, and slowly building up exercise.
 
Snowdrop said:
It would seem that among the many beliefs in the BPS system ' saying words out loud is what makes reality' is another. Others outside that bubble might refer to these as false reality beliefs.
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Very much in line with the book The Secret that says what you send out in the universe is what you will receive. It got translated into 50 languages and 30 million copies have been sold world wide.

In Norway there's an idiom warning against saying something negative, because trolls can make it come true.

I heard in a recent podcast on Long Covid from a rehabilitation center in Norway a staff member say they KNOW rehabilitation works on Long Covid, and it was according to the same person important to get going as soon as possible, otherwise the symptoms will get stuck.

Who needs science?
 
Kalliope said:
Very much in line with the book The Secret that says what you send out in the universe is what you will receive. It got translated into 50 languages and 30 million copies have been sold world wide.

In Norway there's an idiom warning against saying something negative, because trolls can make it come true.

I heard in a recent podcast on Long Covid from a rehabilitation center in Norway a staff member say they KNOW rehabilitation works on Long Covid, and it was according to the same person important to get going as soon as possible, otherwise the symptoms will get stuck.

Who needs science?
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I have, for decades been of the opinion that democracy is fragile. Now I'm here stuck at home and everyday I see that science as a guiding concept is even more fragile.

I wish there was some kind of analysis as to why superstition is so robust. We are technologically quite advanced (that being a relative term). Yet for the most part humans persist with ideas that should belong to the peoples of the stone age just borrowing science words and concepts to make the superstition sound like a new idea.
 
Jonathan Edwards said:
So we have the confessions of an ace hypochondriac.
What does that have to do with people who are still ill?
Who has 'spreadsheets and symptom-checker charts'?
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Actually, quite a few of us do this, at least in the early stages, in an attempt to figure out what activities we can do without triggering PEM, how long we can do them for etc. It's not hypochondria.

And doctors call our behaviour hypochondria because they don't understand (a) how confusing and scary it is to suddenly develop this illness - anyone would react with anxiety if they developed it, and (b) that it's actually pretty rational and sensible to try to record your activities and symptoms in order to try to work out what you can do without triggering PEM.
 
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Paul Garner is a **** , but can we please not make fun of him for reacting with anxiety when he first developed long covid? I'm sure every single one of us felt anxious when we first developed ME - anxiety is a very natural reaction to such a confusing and scary illness. Indeed many of us continue to experience anxiety about it - hardly surprising when the illness is so unpredictable.
 
I haven't been, in fact I've commented very little on the matter.

I couldn't understand why people suddenly started being in favour of him simply because he started saying things 'we' like, given his history.

People do not tend to change, not fundamentally.

It looked like a set up, to me, from the beginning and I couldn't figure out what everyone else was 'seeing' that I wasn't - so I kept stum.

I am not surprised, disappointed that someone would deliberately behave in such a manner, so to victimise people like us, but not surprised.
 
I suspect Garner is rewriting the history of his illness. He prefers a story of how he defeated the illness by overcoming his negativity over a story of how he was genuinely terrified and helpless for a few months and then by sheer luck improved. So now he comes across as hypochondriac because he downplays the experience and instead emphasizes negative thoughts.
 
strategist said:
I suspect Garner is rewriting the history of his illness. He prefers a story of how he defeated the illness by overcoming his negativity over a story of how he was genuinely terrified and helpless for a few months and then by sheer luck improved. So now he comes across as hypochondriac because he downplays the experience and instead emphasizes negative thoughts.
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I can't believe you would accuse Paul "I don't have post-viral illness" Garner of having a shifting narrative.
 
FMMM1 said:
2nd. attempt (2000 characters):

"I wish to complain about the report on Long covid & ME/CFS - BBC2 Newsnight - 9th April.

Reference to 2005 [PACE] study i.e. on whether graded exercise therapy [GET] plus psychological support [CBT] were effective in treating ME/CFS. When the study protocol, and available objective (actometer) data, were released it turned out that someone, ill enough to be on the waiting list for a lung transplant, would meet the criteria to be deemed “recovered” [https://journals.sagepub.com/doi/10.1177/1359105317703785].

The 2005 study and others into exercise, and psychological interventions, are unblinded and rely on subjective outcome indicators i.e. questionnaires rather than objective indicators (actometers). NICE has rated them all as low or very low quality.

“87% of Doctors supporting the use of intensifying exercise programs [GET?] and 90 percent backing support for psychological programs [CBT?]”. GPs valuing “referring” patients elsewhere for “treatment” - vested interest. As per the NICE review, there is no evidence these interventions work.

Deborah Cohen worked for the BMJ, which represents GPs, someone with close ties to the BMJ should not have been chosen to investigate these issues.

“treatments that are tailored to those individuals” --- “extensive clinical evaluation” --- objective evidence (e.g. actometer data)?

Contrary to the statements in the program, patients support good quality research e.g. the recently announced genetic (GWAS) study
https://www.nihr.ac.uk/news/largest-genetic-study-into-myalgic-encephalomyelitis-is-launched/25098


The real story here is the wider crisis in science i.e. unreliable research; how best to support people with a poorly understood disease [Long covid & ME/CFS]; vested interests supporting the status quo i.e. despite the absence of supporting evidence.


In my view the program fell well short of the standards I would expect from the BBC. The difficult questions were not asked, in particular of Paul Garner."
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Response from BBC:
"Dear -

Thank you for contacting us with your concerns about our report on 'Newsnight' on 9 April 2021. We’ve watched the piece and spoken to the programme team and we believe this was an impartial report on an issue very much in the public interest.

Professor Paul Garner was interviewed about his personal experience of long Covid, but there was no suggestion in the piece that his experience was the norm, nor that his views were accepted in the wider medical community. His interview was used as a starting point to examine post-viral syndromes such as ME, CFS, and long Covid, and the current medical approaches to the treatment of them. The piece featured a range of voices: Dr Charles Shepherd of the ME Association, Dr Elizabeth Whittaker of Imperial College London, and Professor Chris Brightling and Professor Sally Singh of the University of Leicester. It was made clear that NICE does not recommend exercise programmes for post viral syndromes, and it was explicit throughout that this is a disputed area of medicine and there is still ongoing discussion about the best approach amongst doctors and disagreement between scientists.

Our audience on 'Newsnight' is accustomed to complex stories that present conflicting points of view and we don’t believe they would have taken from this piece any idea that Professor Garner’s views were being endorsed.

Thank you again for taking the time to share your feedback.

Kind regards,

BBC Complaints Team
www.bbc.co.uk/complaints
 
MEMarge said:
Another "computer says no" answer.

Thanks for complaining @FMMM1
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What struck me was how accurate the comments were on this forum e.g. from @Trish - cutting Dr Shepherds input @Michiel Tack fact that the personal story of Paul Garner wasn't balanced by a story from the patient side -- @Simon M concerns about reporter ---

The review on this forum pretty much nailed it - weird how the BBC just defended their position - balanced program my --

Don't know if there's a further tier of complaint?
 
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