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

Thee was a twitter post about block booking the free tickets (and not going). I would have liked to go and do some Free Speech but I can’t. Physically. As in I can’t speak or sit up then.
I’m not sure if I’m one of the threats, surely not. And we have mutual connections- given we live in the same area, this isn’t unusual. He is only at risk of me looking away from him, or not returning a “hello”.
 
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Nightsong said:
I see Cohen has been Tweeting about obtaining "security" for this event. I hope it has nothing to do with ME/CFS; it would just be obscene if Garner were given a platform to invert reality & further stigmatise the ME patient community at such an event.
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I'll try if I come across it but it would be worth replying with how the same claims were exposed as a blatant lie for some secret conference held in... Norway? Same strategy. Same lie.
 
But do you know what made ME much worse, making me housebound when I’d had long Covid for a year? The ME community on Twitter trolling me when I said something about the bps model, writing horrific things to me over and over, sending me into the worst crash of my illness
https://twitter.com/user/status/1844653131939946570


Agree. Hope helps people recover. People need to be open to neuroplastic approaches to help them benefit. Believing CBT and activity are harmful contributes to the "vicious cycles of neurasthenia" (Hurry 1914)
https://twitter.com/user/status/1847282693387477090
 
Mij said:
But do you know what made ME much worse, making me housebound when I’d had long Covid for a year? The ME community on Twitter trolling me when I said something about the bps model, writing horrific things to me over and over, sending me into the worst crash of my illness
https://twitter.com/user/status/1844653131939946570


Agree. Hope helps people recover. People need to be open to neuroplastic approaches to help them benefit. Believing CBT and activity are harmful contributes to the "vicious cycles of neurasthenia" (Hurry 1914)
https://twitter.com/user/status/1847282693387477090
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Tragic.

meanwhile, in this century….do you know what made me worse? CBT and GET “not recommended for ME/CFS” (NG206, 2021)

hey this is fun! Am I doing a science?
 
Francesca Steele did Lightning Process. Sorry, that was not clear from the article quotes.



The Times, 19th November 2022:

'My long Covid: how I finally came back to life'

'Francesca Steele had given up hope. Then she tried an alternative health treatment'

'During a £750, three-day Zoom course, our coach talked the three of us (all with long Covid) through various exercises and taught us all a routine to interrupt negative thoughts. Every time I had an anxious thought about symptoms, I had to say “Stop” and do an intense visualisation, imagining myself in a situation where I was energetic, healthy, confident.'

'There is a sector of the ME community that lobbies hard against such strategies, suggesting that successes must be coincidental or made up. It’s understandable. Although there are an estimated 17 million ME sufferers worldwide, research funding has been minimal. Some patients become bedbound, unable to speak or eat. Some die. Yet reports persist of doctors trivialising the condition, suggesting it is “all in your head”. No wonder many in the ME community consider the promotion of mind-body work heretical.'

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https://www.thetimes.com/life-style...vid-how-i-finally-came-back-to-life-z8d6fvlrz




Sorry, I don't know how to find the Archive link to this article.

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Francesca still blaming ME sufferers for it taking her 16 months to recover from Long Covid.

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Haveyoutriedyoga said:
It’s a great time to have a story to tell if it’s about ME/CFS or Long Covid
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Francesca's story is nearly 2 years old, she had platforms then in the national press to tell her story, and she's still telling it 2 years later on twitter, and still blaming ME sufferers for it taking her 16 months to recover from long Covid.

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Mij said:
But do you know what made ME much worse, making me housebound when I’d had long Covid for a year? The ME community on Twitter trolling me when I said something about the bps model, writing horrific things to me over and over, sending me into the worst crash of my illness
https://twitter.com/user/status/1844653131939946570


Agree. Hope helps people recover. People need to be open to neuroplastic approaches to help them benefit. Believing CBT and activity are harmful contributes to the "vicious cycles of neurasthenia" (Hurry 1914)
https://twitter.com/user/status/1847282693387477090
Click to expand...


I am old enough to remember when it was not unusual for the medical profession to say that people with MND (ALS) shouldn’t be told their diagnosis because it would destroy any hope. False hope made no difference to the course of their condition and prevented them preparing appropriately or proactively for their inevitable deterioration. It may have even shortened their lives as they were not prepared for feeding issues when they occurred and increased any communication difficulties as communication aids were only introduced, if at all, when too late. At its worst this false hope left some people with MND in total incommunicado dying prematurely of aspiration pneumonia.

Research tells us that only a small minority of people with ME will recover fully, perhaps in the region of 6%. Over exertion can cause short term and even long term deterioration. False hope is virtually guaranteed to lead to over exertion at some point. In the thirty years of my ME I would have had a better quality of life if I had I accepted that any recovery would be to a ceiling and that pushing against that ceiling causes relapse twenty plus years sooner than I did.

Added - it is theoretically possible that some of these wo wo techniques help that 6% of people though there is not reliable data on this, but it is a fact that they do not help a majority and that they can cause serious harm and long term deterioration. No ethical doctor or practitioner should be advising individuals to attempt such things unless that have established a sure fire way of saying who might be helped and who will be harmed.
 
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Interestingly he refers to 'activity' on 18 Oct which is referred to in the 2021 guideline and not GET which was excluded as a treatment from that guideline.
Absent , as always, is any mention of consideration for patient safety.
 
Peter Trewhitt said:
Also I have previously pointed out that there is hope that gambling will result in an increase in you personal wealth, so by the Garner/Steele argument everyone with financial concerns should be out there gambling.
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If I say nice things to my coins, am I more likely to win? I’m going to say “win!” Every time I doubt whether spending all of my money in this way is a bad idea. Win!
 
Haveyoutriedyoga said:
It’s a great time to have a story to tell if it’s about ME/CFS or Long Covid
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Yeah which is it that neuroplasticity can cure? I’ve done a literature review.
1. Post Covid Condition - one subject PG cured after 6 months of mild impairment, post Covid
2. Long Covid - one subject FS cured after 16 months of varied imparement.

I think my main concern is that none of these people had ME
 
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