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

The Guardian’s letter page (11th March 2021) carried a call from Dr Alastair Miller, Prof Paul Garner and Prof Peter White, advocating Graded Exercise Therapy under the heading that ‘those with post-Covid fatigue syndrome should not be discouraged from trying it’. The writers stated that “… 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. “

ME Research UK’s Vice Chair, Mrs Sue Waddle, has written to The Guardian in response

“Sir,

The suggestion that Graded Exercise should be used as a treatment for those patients now suffering what has been termed “Long Covid” and which exhibit symptoms with a marked resemblance to ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is strongly refuted.

Many ME/CFS patients who already exhibited moderate symptoms of the illness reported that undertaking Graded Exercise Therapy (GET) caused a marked escalation of symptoms, leaving their symptoms permanently worse. Two highly influential peer-reviewed articles often used to support the use of GET namely, the Cochrane review and the PACE trial, are subject to international criticism and calls for retraction based on deficiencies in underlying scientific methods employed and in the interpretation of data gathered.

On 22nd July 2020 NICE issued a statement on GET and its use in recovery from coronavirus and specifically cautioned against its automatic use for those with post-COVID-19 fatigue. And that was at a point when NICE still advocated the use of GET for those with ME/CFS.

Since then, NICE has held a wide-ranging, evidenced-based review of the ME/CFS guideline and on the use of GET in particular. This took into account all trials and studies, including the PACE trial, but also the lived experiences of those who undertook GET. The latest draft guideline states that GET should no longer be offered for the treatment of ME/CFS. Instead, patients should be encouraged to remain within their “energy envelope” so as not to worsen their symptoms. Hardly a ringing endorsement for the statement of “graded exercise therapy [being] an effective treatment for chronic fatigue syndrome (or ME), a clearly related condition.”

All health professionals should, surely, ensure that first they do no harm and they would be wise to learn the lessons from the harm already done by GET to those suffering from what could be a parallel illness.”
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https://www.meresearch.org.uk/letter-the-guardian-re-graded-exercise-therapy-and-long-covid/
 
Dolphin said:
Interview: Paul Garner
Source: Gavi
Date: March 12, 2021
Author: Priya Joi
URL:
https://www.gavi.org/vaccineswork/being-hit-cricket-bat-doctors-battle-long-covid


'Like being hit with a cricket bat': A doctor's battle with long COVID
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He's openly plugging the Lightning Process now:

It’s so important to read recovery stories, like the ones on a website called Recovery Norway, about people who have recovered from ME/CFS.
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What is interesting is that he (and others who claim to be have recovered from the LP) never mention whether they are now able to return to work on a full time basis again. A lot seem to go on to be LP practitioners instead.

I'm willing to bet that many are still very sick but are lying to themselves and others about it.
 
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Art Vandelay said:
Which is it, Paul?
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Now, now. We aren't going to prevent people from changing their beliefs in the face of better evidence and experience, are we?
Nah just kidding. It's not every day that you get such a salient example of how much people's opinions are usually based on their own preconceptions. And just because their preconceptions evolved doesn't mean their epistemic framework did.

>"If you expect things to happen then they do."

If the directionality and magnitude of this hypothetical effect are EBM-sanctioned, it's "placebo/nocebo". If it's not, it's magical thinking. It's always hilarious how medicine fashions its own tools to hack together the auxiliary hypotheses needed to justify anything.

>"What is interesting is that doctors with long experience in treating and researching post viral syndromes have been in touch, saying how much common sense I had written."

Great example of bothsides-ism. The fact that the overwhelming majority of patients, doctors or not, disagree with him, should clue him in on something. I'm sure you could find an army of doctors to support any statement you want about just about any condition.

>And I replied “please hold on to your critical appraisal skills”.

Right on, Paul.
 
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Jonathan Edwards said:
One wonders what sort of doctor lists kindness as a personal attribute on his CV!
So Miller and Garner are both at Liverpool Infectious Diseases - the circle gets smaller by the day.
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And Miller was the medic responsible for assessing harms in the FINE trial and I think PACE too.

I have a story from the FINE trial. I'll dig it out when I am back at my desktop later.
 
Quote from Garner: There’s an ME dogma that anything to do with the mind-body connection should be rejected, anything to do with exercise therapy should be rejected.

Invisible Woman said:
Quite, quite wrong.

Of course there's a mind body connection. Whatever the mind is exactly. We just object to fairy tales and assumptions that aren't backed by solid, rigorous research being taken as gospel.

As for anything to do with exercise therapy being rejected....... No just therapies that aren't underpinned by science where they actively avoided recording harms properly in the trial that was supposed to definitely prove GETs effectiveness once and for all and where they continue to fail to record harms or outcomes in many dedicated clinics.
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I would also point out that M.E. folks do not reject exercise, I'm sure that almost all of us try to keep exercising and many of us went for GET and CBT and tried to do what was recommended. We're not saying exercise is bad from dogma we're saying it from experience.
Exercise for M.E. is very much wrecking a square peg trying to hammer it into a round hole.
 
Simbindi said:
But he's saying this in the context of having Long Covid/Chronic Fatigue Syndrome symptoms, not as the physiological issue of having too much refined sugar in one's diet over a period of time. I also notice having symptoms if I've eaten too much refined carbohydrates over a few days. I never thought of that as being part of M.E. though.
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I definitely only developed it when I got ME, and the same goes for some other folk I know. It reliably triggers PEM, and it isn't the result of a dietary excess or underlying diabetes. A slice of cake can be enough.

In common with activity, it depends how my ME is generally. If I'm having a good run I can tolerate more refined sugar, but if I keep on eating it, it will cause a downturn. This is most likely to happen over Christmas, even though I'm doing less activity than usual because the weather's too rubbish to go out; people bring cakes and mince pies, and because it's such a dark, gloomy time of year (and because I'm an idiot), I end up eating them.
 
JemPD said:
from his interview I just dont recognise any of that. does anyone else? - being "frightened" of being ill the next day? I never feel like that, i'm always shocked when the PEM kicks in.
Thinkin you allergic to sugar because you ate a lot of cake yesterday? sorry but thats just daft, who thinks that?!
"People with long COVID sometimes get completely obsessed" Well you did. I'm trying not to judge as being ill can make one nutty. But perhaps it'd be an idea not to extrapolate one's own foolishness to everyone else.

I also cant help but notice the irony of the fact that the Drs who are currently patting him on the back are the ones who get their patients to keep ridiculously detailed & pain-in-the-arse 'activity diaries'

ETA more on the experiences of not being frightened of activity & how widespread the opposite way of thinking is to Garner's at least on this forum here: Members only - Do you underestimate how ill you are? | Science for ME (s4me.info)

Edited: to correct a typo & replace a word with a less harsh one
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Actually, I do recognise something similar. Especially from patient groups on FB! Some patients can be way too fast to attribute their symptom fluctuations to all sorts - something they ate, something they did, mouldy wall, changes in the weather, new supplement, etc. They can get really worked up. I've seen it again and again. It's definitely a minority, though.

Edit. No, this is definitely not only confined to this illness.
 
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Kitty said:
To be fair, if you happen to be one of those who reacts to it, it does quickly become obvious that it's caused by refined sugar. I found, right from the outset, that it triggers nearly as much PEM as exercise, complete with swollen glands and the whole caboodle.

Repeated consumption of high GI foods such as white flour quickly starts to cause IBS and fungal overgrowth (oral and genital candida, 'ringworm' on the skin), but in my experience at least, not PEM.

No excuse for a doctor to describe it as an allergy, though. High glucose foods make me feel and look like sh*t, but I've never come out in hives or had my face swell up.
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Thats interesting Kitty, I stand corrected, thank you for sharing. It seems to make no difference to me whatsoever, that must be a right pain! A little bit of 'nice' keeps me going sometimes :)
As you say, calling it an 'allergy' isnt very good from a doctor though.

InitialConditions said:
Actually, I do recognise something similar. Especially from patient groups on FB! Patients are way too fast to attribute their symptom fluctuations to all sorts - something they ate, something they did, mouldy wall, changes in the weather, new supplement, etc. They can get really worked up. I've seen it again and again. It's definitely a minority, though.
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Really? wow, thanks for sharing that, i again stand corrected. I guess it's easy to do when you're a layman grasping for answers to things that make no sense, especially in the beginning.

I imagine that the occasional person perhaps feels frightened & gets obsessed too. It would be interesting to find out if those who report recovery/improvement from the CBT/LP type approaches are those who get obsessed/feel frightened.
 
Art Vandelay said:
He's openly plugging the Lightning Process now:



What is interesting is that he (and others who claim to be have recovered from the LP) never mention whether they are now able to return to work on a full time basis again. A lot seem to go on to be LP practitioners instead.

I'm willing to bet that many are still very sick but are lying to themselves and others about it.
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Off the chart BPS
 
I've just tried to reply to a converstaion on Paul Garner's twitter feed. I've discovered that he has put limits on who is able to respond to posts. So it's probable that his twitter feed is about to become very one-sided.

(I was blocked by Trisha Greenlaugh some time ago, like many others, even though I never interacted with her at all and as far as I am aware, my posts in general are always polite.)

I don't know why I feel this so acutely. I suppose that I'm fairly comfortable generally, with folk having different opinions ... as long as I am free to give my response. But when I am denied a voice in an area that has been so damaging, I feel extremely hurt.

Honestly? To me this feels like a form of abuse.
 
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Art Vandelay said:
He's openly plugging the Lightning Process now:



What is interesting is that he (and others who claim to be have recovered from the LP) never mention whether they are now able to return to work on a full time basis again. A lot seem to go on to be LP practitioners instead.

I'm willing to bet that many are still very sick but are lying to themselves and others about it.
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The executive director editor of The Lancet applauding blatant quackery peddled by a Cochrane co-founder and section director is late-stage institutional brain rot:



Notable fact: if you believe in it it will happen to you is quite literally the book The Secret, I suspect that it makes up a huge chunk of the LP belief system so here is the executive director of The Lancet pretty much applauding The Secret as medical treatment for a disease neither she nor Garner actually understand and this is everything wrong with medicine in its pure, distilled form

Edit: executive editor, not director
 
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Actually, I have just thought of a wizard wheeze to save the government hundreds of millions of pounds. There is no need to set up these research studies to find out about Long Covid because Dr Garner already knows all about it - he said so on telly. We can stop doing trials and epidemiology and just listen to his wisdom - its called verbal flatulence-based medicine.
 
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