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

JemPD said:
What is so absurd about the 'learning to be tired' thing (other than the fact i dont feel tired of course), is that even if they understood the illness of which they claim to speak, they seem to have no understanding that the majority of us, during out initial viral recovery, did EXACTLY what they now recommend. We believed we were fine, couldnt understand why we kept getting these symptoms, didnt link them with activity or stop to rest because of the delay in PEM kicking in after the exertion. So certainly didnt avoid activity or overly rest until we literally could no longer stand up

We werent remotely anxious about our symptoms simply kept up the positive belief that we were fine & carried on with our lives.

When many of us became ill there was no medical advice, there was no internet or support groups, there was nowhere to be advised to rest or to pace or anything else. There was no 'amazon' to find abook about it, there was nothing in the local library, there was no research you could do as a patient.

I told myself i was well, believed i was well, behaved as if i was well. I assumed every massive (what-i-now-know-to-be-PEM) crash was a new virus, & I carried on as normal. Living my life, as normal. Until one day, about 18mnths after the initial virus/infection, it all came crashing down & i ended up in hospital with what they initially thought was a brain tumour.
There was no 'learning' anything. There was no cognitive or behavioural, or indeed emotional response prior to that collapse, other than completely ignoring & dismissing any & all symptoms.
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I had undiagnosed ME for three and a half years BEFORE I became convinced that the fatigue was partly psychological. I was convinced I was recovering when I was running and pushing myself to work full days (I am a writer and musician and didn't have to do it which makes it so much harder to take!) I was in the best shape of my adult life by the time I crashed to moderate and housebound. And then I was referred to someone whose advice was to keep pushing and do get and that the ME association does more harm that good. 2 months later I was severe (although Covid didn't help). This happened in 2020. I was never directed to any resources to learn about my condition. Just gaslit or shrugged at or sympathetically lectured about the mind body connection.
 
Trish said:
I'm really sorry to hear this, @V.R.T. There really is no excuse for us to still be subjected to such awful advice that makes us so much sicker.
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I really struggle with anger and self blame over the situation, to say nothing of grief for the life I didn't have to lose. If I could write more I would tell my story in a public forum to counter this crap but alas I've probably reached my daily limit with these two posts
 
Actually, I know this isn't the place but if anyone knows of any orgs collecting stories like mine for use in attempting to change rules, improve care etc in the UK please do let me know, by PM if that's more appropriate.

To be clear I technically never did GET, if that makes a difference.
 
JemPD said:
What is so absurd about the 'learning to be tired' thing (other than the fact i dont feel tired of course), is that even if they understood the illness of which they claim to speak, they seem to have no understanding that the majority of us, during out initial viral recovery, did EXACTLY what they now recommend. We believed we were fine, couldnt understand why we kept getting these symptoms, didnt link them with activity or stop to rest because of the delay in PEM kicking in after the exertion. So certainly didnt avoid activity or overly rest until we literally could no longer stand up

We werent remotely anxious about our symptoms simply kept up the positive belief that we were fine & carried on with our lives.
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It's resonating especially poorly with long haulers. One pattern I noticed in the first year, whenever discussion of the overlap with ME came up, was the many people who said they didn't have much fatigue so it didn't make sense to them. Kind of familiar. It still pops from time to time with newcomers who didn't know about it, but at least now there are, uh, veterans, who can put it in context.

What it seems in many cases is that it's delayed. That was my experience, I didn't have the ME-type of fatigue until many years. For some it was months before, in many cases it came after a period where they thought they were recovered and didn't even think of it anymore. For many I saw it was the result of exertion that caused the crash and gave them the first taste of it. And of course none of this is fatigue, or excessive fatigue, it's that and so much more. This is illness, not fatigue.

All this obsession with making it all about fatigue is revealing the complete ineptitude of the EBM paradigm, that it simply cannot deliver anything good because it overlooks too much. The official description isn't even right, it's a description that the people experiencing it don't even recognize. None of this is normal. In medicine it basically is, just not in other professions. I see the same in other chronic illness communities, from autism to endometriosis and many others: what the patients are experiencing and what the experts are seeing are sometimes completely different. There is often little to no overlap. Absurd.
 
Barry said:
Would be interesting to know if his observations then would be undermining the rubbish he spouts now.
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Some of this tweets trashing Cochrane or GET and a few private messages with other people have been shared on many of his tweets and to others praising it. He genuinely doesn't care because no one else seems to, there are no consequences. We've been showing how the claims of harassment have been debunked to everyone who keeps claiming them and they don't care, still keep makin them. Straight up don't care that they are lying.

Belief is impervious to contradictory facts. This here shows how this is about nothing but beliefs.
 
I'm not surprised many people with long Covid deny experiencing fatigue. The strongest symptoms early in my illness were neuropsychiatric--confusion, reduced concentration, inability to handle stress, emotional lability, increased PTSD symptoms. I thought that was the cause of my reduced energy envelope. It took years to realize the causality was in the other direction. Also, my experience of PEM fatigue is very different from being "healthy tired." When I have PEM, I don't feel that tired. I usually figure out I have PEM by observing my own signs, not symptoms. If I'm "stuck" trying to do a simple task for several hours, I have PEM.
 
I think of lack of energy as the main problem, and that most other symptoms can be explained as resulting from it. It is not constant severe fatigue, but fatigue plus various other alarm signals and dysfunctions, often fluctuating, with abnormally fast and deep deterioration in response to activity. A deficit, and a fluctuating regulatory response to it by the body as it attempts to manage this deficit and find some compromise between activity and inactivity.

PEM would be a sort of emergency brake triggered by excessive energy expenditure.

I have no idea how accurately this mental model maps to the underlying biology.
 
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Joanne VanDerNagel said:
Unbelievable... Please note: this is NOT a study on LongCovid. And of course associative learning exists. But this is NOT the cause of post acute sequelae of civid, and NEITHER is deconditioning. Please stop such potential harmful advising to patients who may have PEM
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(Unsure if she knows this applies to ME, but a rare expression of calling the emperor's clothes by someone in the emperor's guard)
 
Hasn't everyone on the planet learnt to feel tired within a few hours of being born, and remembered to feel tired every night since then? What on earth is this twit talking about? Is he saying it can be unlearnt so that we can all be productive 24 hours a day?
 
TiredSam said:
Hasn't everyone on the planet learnt to feel tired within a few hours of being born, and remembered to feel tired every night since then? What on earth is this twit talking about? Is he saying it can be unlearnt so that we can all be productive 24 hours a day?
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I think that what he's doing is flooding the space with BS making this about fatigue. Once this nonsense is over, once it's finally acknowledged that it's invalid to build a syndrome out of a single symptom that has been arbitrarily decided to be "primary", whether present or not, then a lot happens. Especially the entire evidence base for chronic illness becomes irrelevant, as it's all based on targeting individual symptoms, which makes no sense in systemic chronic illness.

Because this is always how it's presented: X is good for fatigue, or Y is good for pain. Which is not a relevant statement to make, because it's simply not the problem.

Asymmetry of bullshit in action. The entire evidence base is built around invalid concepts built on some notion of one isolated symptom (but somehow being surprised at finding other issues, "transdiagnostic", even though the conversion disorder is a single fully generic entity). It's all fully generic "have fatigue? exercise!", so it only works as long as the false model is maintained.

So basically it seems to be screaming fatigue fatigue fatigue all the time just to keep the conversation on the wrong thing.
 
V.R.T. said:
I really struggle with anger and self blame over the situation, to say nothing of grief for the life I didn't have to lose. If I could write more I would tell my story in a public forum to counter this crap but alas I've probably reached my daily limit with these two posts
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I've blamed myself too, but just anger suffices here. You did what you were taught your whole life, you did what the so-called professionals were telling you to do. It's the people involved in dubious research-practices and then spreading their erroneous beliefs to those with less time and/or knowledge that are at fault. They did this to you, not you.
 
V.R.T. said:
I had undiagnosed ME for three and a half years BEFORE I became convinced that the fatigue was partly psychological. I was convinced I was recovering when I was running and pushing myself to work full days (I am a writer and musician and didn't have to do it which makes it so much harder to take!) I was in the best shape of my adult life by the time I crashed to moderate and housebound. And then I was referred to someone whose advice was to keep pushing and do get and that the ME association does more harm that good. 2 months later I was severe (although Covid didn't help). This happened in 2020. I was never directed to any resources to learn about my condition. Just gaslit or shrugged at or sympathetically lectured about the mind body connection.
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I have a similar story. I had ME for 3 years before knowing I was chronically ill. I wouldn't say I thought it was psychosomatic, but linked to my pre-existing mental conditions. Never thought about my illness much because I didn't understand how disabling it was for a long time. But if you asked 2020 me, I'd say something like "neurospsychiatric" or "it feels like I pushed myself so hard I permanently damaged my brain." I thought the answer was pushing myself as hard as possible. It didn't work. By blind luck, I didn't get worse-my presentation of ME doesn't seem to include LTSE.
 
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