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

It is remarkably how my subconscious motivation will never override my conscious decision making processes knowing the nightmare I'm going to experience in the next 12-14 hrs after going over my energy limit.

Of course PEM is a "physical response". As is blushing , tachcardia from a frightening movie, vomiting at the sight of a hospital in people who have had chemo: subconscious, influenced by expectations, and involve classical conditioning. Same with PEM.
https://twitter.com/user/status/1862906083750142426

 

How many people will vomit because they saw a hospital yesterday, or blush over something they have already forgotten about or develop tachycardia in the middle of a work day because they watched a scary movie the night before?

How many will develop tachycardia lasting a month or more because they watched a scary movie at the weekend, or vomit on Wednesday because they were embarrassed enough to blush at something on Monday?

Why don’t people who had food poisoning display identical symptoms when they walk past the restaurant six months or several years later? Why don’t people would have had a broken leg when playing football continue to limp on football pitches for years or even decades?

[edited to add final paragraph]

 

People who’ve had chemo vomit at the sight of a hospital? Sounds Pavlovian and not very widespread.

 

This isn’t really a “ u ok hun? DM me” part on the internet, but his sentence structure has gone to pot

 

He keeps asserting that PEM is caused by the brain learning to respond to activity with symptoms. There isn't any evidence of this anywhere as far as I know.

That he is on a mission to spread unproven ideas as facts makes me wonder what his problem is.

Is he desperate to make PEM seem like a controllable problem to himself, for his own peace of mind, since he is worried that it might return?

 

It’s getting meta. He’s been convinced he was ill because he thought he was ill and now he wants to convince others. He’s the Pavlovian subject here.

 

A big part of LP (how it was taught to me at least) is that's important to believe these things to recover (and stay recovered). So if a person attributes their recovery to these beliefs, it's easy to understand why they are so obsessed with them. In their mind this understanding is what's protecting them from disease, function loss and suffering. So they will incessantly repeat these things to themselves and others, to assure themselves and "program it" into the mind, I guess you could say. If they lose faith in these things and the process itself, it can bring up doubt, ambivalence and cognitive dissonance. They want to avoid this at all cost of course, and that's also why they are instructed to cut ties with the ME community and not read any research about it, I think.

But this is of course not a great starting point if you want to become a scientist with an objective view of a phenomena, and see the world for what it is. It's more of a recipe for confirmation bias and very rigid and dogmatic thinking.

 

I can't remember that being said on my particular course, but it does sound like something she could've said. If people asked us how we were doing we were instructed to say "kjempebra!" with enthusiasm. Which I guess could be translated into answering "really great!" in English.

The explanation we were given for why we should do this was that it was supposed to stop us from "body checking", which is what they call it when you use your introception to feel what's going on in your body. Which is supposed to be really damaging and dangerous, and can reignite what they call the "ME pattern".

 

And then you add in how long it takes most people to work out why they suddenly can’t move certain days despite engaging all their previously usual ‘even when I have the worst flu if it’s a critical work event then I can make it with extra time in morning for caffeine, paracetamol etc’ or ‘I’ve got a deadline and can not even notice I’m ill when that last few days kicks in adrenaline’ or just really needing the bathroom and wanting some food to feel better … and that pattern going on for years and working out the connections (because of the time delay and the cumulative and the different combined type you get depending on how much sensory vs PEM or maybe something else affects it).

and no it’s not subconscious if it’s not even the same thing - that’s not how generalisation works . That has to begin with something quite specific like training dogs to fear a really specific type ie tone and number of beeps alarm many many times over , before you can even begin to try and then make it more alarms nevermind other things .

and in fact as your comment shows we do the exact opposite of either avoidance or expectation - we expect what our old bodies would do ie not start to feel funny in that queue and that’s how we end up in those situations

I don’t know whether it’s knowing as you say osychology 101 that makes me wonder where the logic is or if it’s illogical to everyone who stops and thinks about whether the non sequiturs add up

 

I have said before, but it is worth repeating, it is not research psychologists but largely medical doctors who promote so much of this BPS psychobabble. People who dabble. Even psychiatrists don’t seem to get even a basic training in experimental design and psychological research methodology. These same people would refuse medication that had not been through rigorous research, but are perfectly happy to inflict behavioural and psychologically interventions on patients without the same safeguards.

However I have to admit there are very few psychologists, such as Brian Hughes, who actually call out this nonsense.

 

I wish he’d go and become a professor of Psychology seeing as he loves it so much. He could do an Open University course. I have a Pavlovian response to his tweets, I make a sound like

 

This is a telling moment. It's one of those "we really should be taking his keys away" moment where you can judge the behavior of people around this group based on how they react. And they are failing at it miserably, because they have long stopped bothering to make sense. This is not any more or less nonsense than the 'unhelpful beliefs' or the deconditioning-that-isn't-deconditioning, but the fact that you can be a medical professional, in clinical evidence no less, working for what is, oddly and undeservedly, the premier organization doing clinical evidence reviews, say things like this and find zero pushback from peers is just too many signs of complete institutional rot, of systems that have stopped trying to be credible a long time ago, and are focused only on being wrong and in control over getting it right but showing a loss of supremacy.

Obviously this goes against all evidence, not just of PEM but of the fact that we have known for literally years that most cases of LC were from mild acute illness. For which this wild hypothesis makes no sense, in addition to all the ways they don't make sense. Including the fact that hardly anyone behaves the way he describes here, and actually it would make more sense from the real interpretation of vomiting from chemo being really just identical to this weird post I saw, I think, on Bluesky, about someone who is taking ivermectin for their cancer and their doctor are amazed at how well it's working. Oh, they also happen to be undergoing chemo, but it must be the ivermectin that does it! Oh they're doing chemo and vomit after a car ride to the hospital, must be the anticipation of the chemo, and not the past chemo and car ride.

Weird how he started spewing this only in recent weeks. It's so random to trot out this old stuff. Might as well bring back miasma while we're at it.

 

Agreed. maybe it’s because their training doesn’t have at least one or two substantial modules covering the scandals, themes and issues that have gone on. I think these days there is no excuse for that - particularly if you think of people going into a workplace or position of responsibility and/or doing research that will influence tgat. It’s an applied subject and such modules should be compulsory surely on that basis. For all.

Beyond that many of the scandals are well known to those who aren’t studying or working or even interested in these areas so there feels little excuse to not be aware. I’m shocked employers don’t have a need for policies to make sure the harms and lessons from some of the most famous scandals aren’t being reminded very regularly. And absolutely part of ethics committee preparation to be completing a course in that in order to sit on it.

Maybe it’s because they don’t have a requirement to cover the full gamut of the basics that are known in scientific psychology too in order to control for certain things in methodology and design. That’s a different issue to do with the reliance on inference medicine git addicted to without realising that on its own isn’t ‘the science’ (deduction required too, but also it’s the design and ticking all the controls that would make it ‘high quality’ and limit eg bias, mean it’s not just correlations caused by some confounder etc). And pulling the wool over eyes that medicines where yellow card covers most predictable reactions somehow map over and they can cherry pick just using the ‘we compared two things’ but then think it’s on any old measure without yellow card fir any old time frame and can do without double-blind etc

which is little more (or actually less valid) than the old skool Pepsi or Coke tests in malls. Or asking people if a moisturiser made their skin ‘feel younger’ (with a lot of paraphernalia around that encouraging people to do their moisturise more regularly etc) with no blinded control receiving the same literature etc

 

Yes, @bobbler, to train in psychiatry you are not taught much on the methodology of psychological research compared to a clinical psychologist or perhaps a postgraduate of a bachelor of psychology would. But we are taught some of it. Of course psychiatry still has psychosomatic theories taught but the average psychiatrist has specific training in psychodynamic therapies, as well as CBT and many other therapies developed from amalgamating therapies. We do have quite a lot of teaching on the methodologies for doing research in psychiatry but we relied on psychology to provide validated scales and things within their area of expertise.

We are definitely made aware, often by meeting clients who have been abused in the mental health system but also in teaching what not to do from our lecturers anecdotes but also there is a lot of ethics training as well. I don't think my college (RANZCP) acknowledges that ME is purely a biological disorder, it is still sits in the grey zone because of the ongoing influence of the psychosomatic school. (There seems to be a public silence on ME for many years). I am not sure what they are teaching anymore but ME wasn't on the teaching curriculum when I was training but I did have to train in Consultation Liaison Psychiatry and some senior psychiatrists then still saw ME as a psychiatric/psychological disorder. (which was rather uncomfortable having ME myself, keeping quiet was the best policy). Many general psychiatrists saw it as a chronic physical illness but unfortunately many also did not! I think the scientific knowledge vacuum and ithe profession's unwillingness to take responsibility continues to be an issue

We did have a major scandal in NZ around the use of hypnosis and recovered memories of abuse That ended up being part of our teaching.

Returning to PG, it is very interesting that a professor of epidemiology now appears to be an expert on "psychosomatic" illnesses and psychology. He doesn't actually come across knowing anything or have the ability to question anything. He seems to just trot out stuff that often is quite a mismatch of different theories and claim he is an expert. Unfortunately his Oslo Fatigue Consortium, will be talking this psychological and psychosomatic language all the time so he may have picked some up from them. He doesn't seem to have taken on board the adage - a little knowledge is a dangerous thing.

Then there is the possibility that LP has cult-like behaviour. It certainly has several features of it - brain reprogramming that potentially could be a form of brain washing, lack of transparency, a sort of MLM where people are praised and persuaded to have more "training", rewards for performance etc and then to become a practitioner themselves. ( I have seen this occur in NZ)

PG denies he has had LP, maybe he has but maybe he hasn't. We have had so many of our fellow pwME recover and develop brain retraining programs, protocols for diet, supplements etc. Fortunately they are not emeritus professors and the former head of Cochrane and still writing review papers!

 

I misread that as melasma lol. I think it’s probably the dark winter nights, more time to spend online chasing head pats in the Xitter echo chamber he’s created.

 

I actually have an Open University Psychology degree. Getting ME stopped me doing my PhD.

PG would hate it. Absolutely loads on experimental methodology, stats and ethical approval of research studies.

 

My understanding is that he reported having phone conversation with a presumed LP practitioner in Norway which he found particularly informative and which was helpful in developing his understanding of and recovery from Long Covid. So the suggestion is not that he undertook an LP course as such but rather he was influenced by their approach.

 

Yes, normally LP courses from Live Landmark are given outside of Oslo, over three days with 4-5 hours each day, with a group of up to 10 patients (not all of them typically have ME). I doubt that he has actually sat through that in Norway with us lowly, common people. My very clear impression is that people with celebrity status, who can use their platform and authority to give LP/cognitive approaches more credibilty and social proof than normal people, get special treatment. With one-on-one conversations and more frequent follow up in the time after. They are actually being used as pawns in the LP coaches marketing strategy, in my opinion. They typically don't understand or want to acknowledge this themselves, until they are no longer "believers", and can finally view the whole thing critically from outside the "LP-bubble".

So in a sense you could say he probably officially hasn't had the LP training as she delivers it to most patients. But from talking quite a bit to Live Landmark after my own course, and following her afterwards on social media/reading all of her opinion pieces in the newspaper (of which there are many), I think I can say that her whole approach is shaped by her LP training. So if he's been given information by her over the phone, it's very likely a more condensed form of the course, based on it's underlying principles.