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

alktipping said:
i will hazard a guess that a lot of the guardians finances are from insurance industry adverts
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It really isn't. Advertising stopped propping up newspapers a long time ago; even when I worked in the industry years ago, it was only usually a subsidiary income stream for titles with a cover price.

A good chunk of the Guardian's funding still comes from the historic trust, but they've also persuaded a million or so readers to make voluntary subscriptions. The wider industry thought it was a loopy idea (as I suspect did many of the staff), but it seems to have had some success at least.

They publish all sorts of letters – some of them infuriating, others tiresomely worthy – but at the end of the day they're just letters. If they had to please any kind of paymaster, they'd have to do a whole lot better than this scrappy effort.
 
InitialConditions said:
We usually have people on hard. @Robert 1973 is always very good with letters. I'd do it myself but I don't know the trials inside out. The elephant in the room is that the patient experience / surveys are completely disparate with the trial findings as far as efficacy and 'harm'.
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Sorry, will probably need to be someone else this time. I’m completely stuffed.

PhysiosforME said:
We're trying to work out how to do just that
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My advice, FWIW: keep it under 250 words and try to send it ASAP. The cut off for Saturday’s Guardian will be about 12 noon Friday. They’re unlikely to publish a response on Monday unless there is more correspondence on the same subject published before then

Good summary of the literature on harms:
https://davidfmarks.com/2021/03/10/treatment-harms-to-patients-with-me-cfs/

This was my BMJ RR on evidence of harms:
https://www.bmj.com/content/371/bmj.m4356/rr-0

Edited to add: it might be looked at as a positive that they have had to resort to writing letters to the editor like us plebs instead of being invited to pen their own opinion articles.
 
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Robert 1973 said:
Dr Clare Gerada talking about #LongCovid on BBC Breakfast this morning: “There is nothing that isn’t made better through exercise. OK. Nothing. No matter what age, what condition, exercise will always improve it.”
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I personally think Gerada has made a huge own goal here, not just for herself but for all like-minded BPSers.

Those who matter, such as NICE, cannot fail to see this time around, what an absurd thing this is for a medical professional to say. It is clearly self-opinionated rubbish. In which case it becomes self evident that if she and her like can blatantly spout such medically illiterate BS, then the odds are she and the like have been doing so in the past, perhaps less blatantly, without people being so aware.
 
Barry said:
I personally think Gerada has made a huge own goal here, not just for herself but for all like-minded BPSers.

Those who matter, such as NICE, cannot fail to see this time around, what an absurd thing this is for a medical professional to say.
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Unfortunately people seem to be ignoring or not really hearing this part of what she said, whereas I saw it as the key quote. I fear she is managing to sound reasonable to too many people, who are missing the key point. I do hope people come to understand that this is absurd, but it would involve paying a lot of attention. Is anyone paying that kind of attention?
 
InitialConditions said:
The key here is the argument that the *trials* don't show evidence of harms. I think we all know many reasons why they might not, but this needs to be communicated properly by someone who knows about this stuff.
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Perhaps an opportunity to highlight the lack of a yellow card system, or the like, for patients to report harms... If you refuse to colect data on harms in trials, and refuse to provice a system for patients to report harms, then the absense of reports of harms is really not the same as being able to say there is no harm here...
 
Dr Clare Gerada talking about #LongCovid on BBC Breakfast this morning: “There is nothing that isn’t made better through exercise. OK. Nothing. No matter what age, what condition, exercise will always improve it.”
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I post this mainly to suggest that it can be risky to speak in absolute terms.


There was a 2017 study that followed a 3,175 people over 25 years to determine the effects of physical activity on their health.

They were divided into three categories: A) those who exercised below the guideline levels, B) those who exercised at the guidelines and C) those who exercised at 3x the guideline level.

Those who exercised at 3x the guideline level were 27% more likely to have developed coronary calcium deposits [CAC] after 25 years. Also...

When these findings were stratified by race and gender, they found that white men were at the highest risk–they were 86 percent more likely to have CAC. There was no higher odds of CAC for black participants who exercised at this [3x] level, and while there was a similar trend for white women it was not statistically significant.

https://today.uic.edu/physically-active-white-men-at-high-risk-for-plaque-buildup-in-arteries
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https://www.mayoclinicproceedings.org/article/S0025-6196(17)30577-3/fulltext

This is just an example of a case where "too much of a good thing may be bad for you." It also shows that "too much" can vary among individuals.
 
Andy said:
Long Covid and graded exercise therapy

No trials of graded exercise have shown to harm patients, say Dr Alastair Miller, Prof Paul Garner and Prof Peter White, so those with post-Covid fatigue syndrome should not be discouraged from trying it

https://www.theguardian.com/society/2021/mar/11/long-covid-and-graded-exercise-therapy
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They seem terribly confused about the purpose of rehabilitative approaches.

Graded exercise is worthwhile as rehabilitation post-covid for patients that are NOT suffering from LongCovid, but merely residual deconditioning and pulmonary impairment.
 
I completely sympathise with feeling too stuffed to mount a campaign, been trying to find the ergs to change my bed clothes for the last week but thought I would chime in to lend moral support!

The BBC/Garner are trying to have their cake and eat it!

To quote Garner's own hyperbole.
I had Long Covid & met Canadian consensus criteria for ME/CFS. I have recovered: I feel that I have looked down the barrel of the ME/CFS gun and disarmed it.
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So he said he had ME and is on the beeb and elsewhere recommending exercise in a manner which NICE have just said is not appropriate for ME and is blogging and co-authoring letters with a PACE author which push the BPS insurer lobby agenda trying to prevent the recognition of ME and brush it under the carpet with bombastic generalisations and condescending obfuscation.

But the beeb are saying its a totally different condition, which while it may be true at one level is inconsistent with Garner's own statements and shows the beeb do not appreciate what is going on, whose interests they are acting in by blinkering themselves and are just trying to save their own hides if they do.

This is effectively misinformation and the beeb have got to respond more constructively.

Whether Garner actually had ME is neither here nor there, logically he did not, because ME is what happens when you dont recover by definition. What matters is he is presenting himself as a PWME and then using his professorial position to recommend the opposite of what is now the NICE recommendation and that is a no-no.
 
I haven't been following this thread but has this been posted? (Please anyone feel free to post it somewhere better - I feel it needs a response.)

https://www.theguardian.com/society/2021/mar/11/long-covid-and-graded-exercise-therapy

Letters to The Guardian said:
Long Covid and graded exercise therapy
Letters


No trials of graded exercise have shown to harm patients, say Dr Alastair Miller, Prof Paul Garner and Prof Peter White, so those with post-Covid fatigue syndrome should not be discouraged from trying it

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‘We need trials of this treatment in post-Covid fatigue.’ Photograph: Caiaimage/Paul Bradbury/Getty Images/Caiaimage

Dr Joanna Herman is right to call out the lack of care being offered to sufferers of long Covid (People with long Covid urgently need help. Why can’t we access it?, 10 March). The willingness of doctors to speak out as patients has done much to highlight the long-term effects of Covid-19.

We know that long Covid is more than one disease, all of which will need different treatments. But we do not know that graded exercise therapy is detrimental to recovery from the post-Covid fatigue syndrome. There are no such studies.



In contrast, we know that graded exercise therapy is an effective treatment for chronic fatigue syndrome (or ME), a clearly related condition. Moreover, no trials of graded exercise have shown harm to patients. We need trials of this treatment in post-Covid fatigue. In the meantime, let us not discourage patients from accessing what may be a helpful treatment, so long as it is provided by physiotherapists trained to properly deliver it.
Dr Alastair Miller Cumberland Infirmary, Carlisle, Prof Paul Garner Liverpool School of Tropical Medicine, Prof Peter White Queen Mary University of London
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@Jonathan Edwards
 
Professor Paul Garner of miraculous recovery from Corona Virus ‘long haul’ fame, co-signs a letter endorsing Graded Exercise Therapy, Guardian, 11 March 2021:

Dr Joanna Herman is right to call out the lack of care being offered to sufferers of long Covid (People with long Covid urgently need help. Why can’t we access it?, 10 March). The willingness of doctors to speak out as patients has done much to highlight the long-term effects of Covid-19.

We know that long Covid is more than one disease, all of which will need different treatments. But we do not know that graded exercise therapy is detrimental to recovery from the post-Covid fatigue syndrome. There are no such studies.

In contrast, we know that graded exercise therapy is an effective treatment for chronic fatigue syndrome (or ME), a clearly related condition. Moreover, no trials of graded exercise have shown harm to patients. We need trials of this treatment in post-Covid fatigue. In the meantime, let us not discourage patients from accessing what may be a helpful treatment, so long as it is provided by physiotherapists trained to properly deliver it.

Dr Alastair Miller Cumberland Infirmary, Carlisle, Prof Paul Garner Liverpool School of Tropical Medicine, Prof Peter White Queen Mary University of London​

Read this bit again: ‘In contrast, we know that graded exercise therapy is an effective treatment for chronic fatigue syndrome (or ME), a clearly related condition. Moreover, no trials of graded exercise have shown harm to patients.’

Time for a counter-attack, I reckon.
 
Kitty said:
Advertising stopped propping up newspapers a long time ago; even when I worked in the industry years ago, it was only usually a subsidiary income stream for titles with a cover price.
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Not strictly true. A close relative works for a newspaper group (not a journalist). It depends on the paper & they have changed over the years but advertising is still very important to at least some.
 
Barry said:
I personally think Gerada has made a huge own goal here, not just for herself but for all like-minded BPSers.

Those who matter, such as NICE, cannot fail to see this time around, what an absurd thing this is for a medical professional to say. It is clearly self-opinionated rubbish. In which case it becomes self evident that if she and her like can blatantly spout such medically illiterate BS, then the odds are she and the like have been doing so in the past, perhaps less blatantly, without people being so aware.
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Her own public timeline on twitter suggests she did not exercise for many months while dealing with what she called something like "horrendous fatigue" that she had never experienced before.

She exercised after improving, not the other way around. So did Garner. Their own public statements contradict them. If only that mattered or if people cared about consistency and integrity.
 
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