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

"Some of the ME/CFS (Chronic Fatigue Syndrome) leaflets were telling me not to get my heart rate too high either, that this would cause a crash. When I went on a bike ride one day and my heart rate went above 110, I got completely frightened that I’d be ill the next day. If you expect things to happen then they do". :emoji_rolling_eyes:

PG really makes the ME community out to be fear mongers.
 
Quote from the interview:
- The Cochrane review of exercise treatment for chronic fatigue is very well done and it was useful to me later in the illness, although early on when I was still feverish I needed to rest.

ETA:

- It’s not been an easy journey and I’ve had the most horrendous backlash. 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. The ME community had recognised what I had before I did, and they could see that long COVID is effectively chronic fatigue syndrome/ME for many people. But some of the long COVID doctors forums are saying I am being irresponsible writing up my recovery story. I’ve even had colleagues that I've gotten to know through long COVID telling me I should withdraw my BMJ blog and that it was going to harm people. 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.
 
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I think it's called not seeing the wood for the trees.
It's also called wanting desperately to be patted on the back, regardless of causing other people distress.

Kalliope said:
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.
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So the proof of his wisdom to himself is that some old chums say he is on message. Not that he has figured out that it makes sense or anything.

ETA: According to Wikipedia:
Zelig is a 1983 American mockumentary film written and directed by Woody Allen and starring Allen and Mia Farrow. Allen plays Leonard Zelig, a nondescript enigma, who, apparently out of his desire to fit in and be liked, unwittingly takes on the characteristics of strong personalities around him. The film, presented as a documentary, recounts his period of intense celebrity in the 1920s, including analyses by contemporary intellectuals.
 
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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.
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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.
 
As we spoke on the phone for 30 minutes, I was having trouble speaking because of brain fog. I told her that always happened; she guided me through a standard relaxation exercise for a few minutes. That was the last time I had brain fog and trouble speaking. It was extraordinary.
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Uh uh. Sure. Just one mindfulness = brain fog gone. Very credible person. Not prone to histrionics or anything, eats one cake and feels bad after and screams AM I ALLERGIC TO SUGAR?!

It's all projection. These people are unable to deal with illness, they seem to genuinely catastrophize, which is actually rare. Some do react this way but most are far more rational despite lacking medical training. Then again maybe it is that medical training that makes them leap to catastrophic thinking, knowing about so many nasty diseases is probably not very reassuring when one's symptoms could be any of those. I'm sure many did but I never once thought the illness hid anything worse, it's bad enough as it is.

Ironically the insistence that organ damage must be the explanation has mostly come from long haulers, not something I have seen much in the ME community. Also from people like Trisha Greenhalgh, who has insisted that it's a more likely explanation, even though it never made much sense, because she wants to keep the separation. Garner is very in on there being no separation whatsoever, which is clearly wrong.
 
from his interview
As time went on, I got obsessed by the highs and lows of long COVID. I thought, are these attacks random? I ate a lot of cake one day, and then the next day I crashed. And I thought oh my god, I'm allergic to sugar.

Some of the ME/CFS (Chronic Fatigue Syndrome) leaflets were telling me not to get my heart rate too high either, that this would cause a crash. When I went on a bike ride one day and my heart rate went above 110, I got completely frightened that I’d be ill the next day. If you expect things to happen then they do. I had charts and spreadsheets tracking all my activity and how much time I was on the computer and so on. by what’s happening and think it is simply a biomedical illness, but it’s more complicated than that.
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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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I don't either.

It took me many years to notice there was any pattern to PEM, and even then all I knew was that if I worked too hard I got ill, and non functional.

I certainly didn't keep spreadsheets, or notes, or anything.

It was just a thing that I eventually noticed happened.

...and a doctor who thinks someone can be allergic to sugar?

Even if such a thing was recognised as being metabolically possible, why would he think 'sugar' why not the additives added to all white flour in the UK? Why not flavourings? Why sugar?

Unless it's been deliberately crafted as a soundbite for the consumption of those who he assumes know nuffin about nuffin, and not something he ever seriously considered.

A lie in other words.
 
JemPD said:
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 idiocy to everyone else.
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Wonko said:
I don't either
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It reminds me of Vogt's story where he had an over-reaction to his tinnitus &was unable to keep it in proportion/kept obsessing over it - or something like that i dont remember his exact words - what i remember is the assumption that because he had an inappropriate/unhealthy response to an experience, that must be what everyone* does.

Edited: to remove the word 'physical' - the type of experience is irrelevant & a distraction from my point, which is - 'just because you did/felt that, doesnt mean everyone, or even the majority did/do.
 
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Wonko said:
Even if such a thing was recognised as being metabolically possible, why would he think 'sugar' why not the additives added to all white flour in the UK? Why not flavourings? Why sugar?
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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.
 
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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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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