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

https://twitter.com/user/status/1301873210586267649

Mildly interesting in terms of the 6-month criterion sometimes used by ME/CFS criteria

 

Yes. "Has covid-19 gone?" is a little ambiguous. Perhaps it has. It may now be ME.

 

https://twitter.com/user/status/1301878872879894528

Interesting that an OT (who seems to have ME/CFS?) would think that pacing is about increasing activity. It shows how "pacing" is sometimes used in different ways. When I’m suggesting pacing, I'm not suggesting necessarily increasing activity.

 

Excellent article. Very thankful to professor Garner.

Although I strongly disagree that Cochrane should not be blamed. In fact they deserve enormous blame, have had everything they needed to fix this for years, could not even argue their way out and had to resort to desperate measures to avoid embarrassing the authors, whose reputation and ego they clearly and unequivocally placed far above patient safety and reliability of evidence, including their own entire set of rules.

Cochrane deserves so much blame here they need to be sued at a level that will teach them a lesson they will never forget, it has to hurt enough that they will never repeat this failure again. I am absolutely certain this will never happen, medicine and accountability do not cross paths, but the entire organization deserves serious consequences for what they have not only done but continue to do, knowing it is harmful. Essentially it boils down to: first do no harm, or else what? Seriously: or else what? If nothing, then clearly this Hippocratic thing really is nothing but a cheap, meaningless slogan.

But at least the conversation is on the right path. It just sucks knowing that at the same time, every single research and rehabilitation team is working in the wrong direction, obsessed with exercising their patients back into health despite deconditioning having nothing to do with their illness. And Cochrane is massively to blame for this. Enough of that infinite tolerance for failure, it's damn time for the kind of accountability that teaches lessons.

 

ah, that would be 'pacing up', a way of avoiding calling it GET
https://www.s4me.info/threads/pacin...oklet-revised-and-updated-january-2020.13320/

 

This was posted to a list I'm on:

 

Paul Garner's last tweet, 31st Oct, to mention Long COVID

Code:

https://twitter.com/PaulGarnerWoof/status/1322556482701926404?s=20

https://twitter.com/user/status/1322556482701926404

 

"Others stop moving altogether because they are so tired and get nowhere. But continuing to exercise is crucial, says Hoefman. “Otherwise you will go downhill. Then they really have to force themselves to walk for ten minutes three times a day, and then always rest. That is more effective than half an hour once. ” An important thing about walking is that it clears your head. "These people are understandably unsure of what is happening to them and they grind a lot."

I stopped moving much for 5 1/2 years during PVFS and it didn't deteriorate my health. I didn't feel the need to exercise to 'clear my head' to understand that I was physically ill.

 

Paul Garner tags Professor Trudy Harpham, giving the strong impression that she is the 'teacher' to be thanked for his recovery.

Harpham is a health sociologist with an interest in behavioural interventions and child abuse. I have no idea what she taught Dr Garner but we can be reasonably sure she would have had no evidence to base it on.

It seems that some will forever want to psychologise/sociologise people.

My own experience with PVFS was that one day I found 'within three weeks I was healed'. I put it down to getting better.

 

Is Paul Garner recovered now? I may have missed this.

I wouldn't be surprised. I think a large proportion of people with long covid will recover within a year as I think a large number of people with PVF do. That's why I would prefer that ME/CFS was diagnosed after a year and it remained PVF to that point.

 

Unfortunately, Paul Garner accepted a somewhat psychosomatic framing of his illness in an earlier account back in June:

The model his physiotherapist was describing sounds more akin to PTSD than ME.

And a few of those with self-limiting PVFS also have a tendency to attribute their recovery to whatever it is that they were doing at the time, whether that is dietary changes or psychotherapy or taking supplements.

 

Ah, I missed that, thanks for filling me in. It sounds like Anna is giving good practical advice but with unevidenced reasoning.

Strange that he accepts explanations about "embodied memory of the illness" when he seemed to keen on the science before but I think these kind of metaphors can be helpful at a time when one is grasping for sense and reason. At least he seems to be advocating pacing. I hope he continues to make progress and reach a full recovery.

Totally agree with your last point about how people often attribute their recovery to whatever they are doing at the time. I think our brains are programmed to look for patterns and attributing recovery to something you did gives a reassuring sense of control.

 

Metaphors like that can also be highly damaging, in my view. I don't think therapists have the right to teach people nonsense just because it might make them feel comfy at the time, nor do I think people like Garner, who has taken on a missionary role has the right to spread this gospel.

People come to believe this stuff in extremely counterproductive ways. As an example someone being told that their problems are due to an unhappy childhood (which previously they had seen as entirely happy) can lead to the person going around telling people their parents are evil and destroying their happiness in old age. I see no reason why it should not be the case that people told this sort of drivel about 'embodied memories' may come to believe that they have some sort of inner destructive power controlling their health. Beliefs can destroy people and in this situation the beliefs are coming almost entirely from health professionals with phoney ideas.

This stuff is bullshit and it needs to be exposed as such.

 

I couldn't agree more. In the 80s and 90s, bad psychology (and psychiatry) tore a lot of familiies apart, as many people got fed the line that the root of their problems must lie in their childhood. Patients were encouraged to think about all the ways their parents might have undermined them, neglected them or were overly controlling, or simply failed to hug them. Something in that big bag of tricks to fit every individual whose parents weren't perfect, On the more rabid end of the spectrum we had "recovered memories" which on closer inspection just look like ideas planted by suggestion, which get confused for reality - but still manage to destroy relationships and have even led to people being prosecuted for acts that never occurred.

 

It all makes one wonder what it was that happened in the childhood, and general family experience, of those therapists, psychologists and psychiatrists which led them to hold such views.

 

Reminds me of Oscar Wilde's quip about literary critics on Hamlet - are they mad or just pretending to be?

 

When I read "embodied memories" it reminded me immediately of the explanation for homeopathy, ie that water retains a memory of whatever has been diluted out of it. Perhaps having the substance in it before it was diluted 30,000 times is an unhappy memory from its childhood which the water has repressed but retains in its subconscious, affecting it's ability to heal in later life, but in this case giving it healing powers rather than making it ill. I wonder if having ME gives me the power to heal others? I feel a business opportunity coming on ...

 

Moved from the long Covid thread.

Well, I guess we can kiss any progress at Cochrane goodbye. This is why anecdotes are unreliable.

https://blogs.bmj.com/bmj/2021/01/25/paul-garner-on-his-recovery-from-long-covid/

Good for him, bad for nearly everyone else.