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

"PG: In the media, the dominant narrative on long COVID is from biologists and immunologist, but nobody is interviewing chronic fatigue physicians, and more rational, clear-headed discussion that takes into account people’s lived experiences is what we need more of"

What is a 'chronic fatigue physician"? Is this a new specialty?

 

AfME's response to the letter, https://www.actionforme.org.uk/news/ceo-responds-to-letter-in-the-guardian/

 

Garner seems to be cognitively impaired in some way. His ideas contradict each other and he doesn't seem to realize it.

He says we should take people's lived experience into account, but he also thinks patients are wrong to reject "the mind-body connection" and "exercise therapy" and that he had a horrendous backlash to his ideas from patients. This rejection is based on lived experience but it doesn't seem to occur to him, despite just last year agreeing with patients.

According to him patients are also obsessed with symptoms and should pay less attention to them.

He says we should listen to "chronic fatigue physicians". I thought we were supposed to listen to the lived experience of patients. Just not when they obsess over symptoms. Also, many "chronic fatigue physicians" completely reject weird mind-body ideas and GET.

Then there's this utterly absurd situation of Garner being a specialist for interpreting evidence and at the same time wanting to be taken seriously with his story of being miraculously cured after a phonecall by reprogramming his brain.

And why does Garner even think that half a year of a postviral syndrome puts him in a position to lecture other patients who have far more lived experience than he has?

 

Mmmmm........ Alistair was a medical advisor to AfME........ Another physician suffering from SMS, Short Memory Syndrome...? https://meassociation.org.uk/2015/02/minutes-of-meeting-of-forward-me-group-main-speaker-dr-alastair-miller-20-january-2015/

 

Me too, I think The Universe must really not like me one bit. Was it something I said? I do try to be nice!

His movements have been notably erratic: first believing in ME-related advice such as pacing, finding it very helpful and expressing thanks for the help, then a few months later he's scuba-diving and catching dengue fever, another few months later he's now believing in the power of the mind as cure for LongCovid and ME, which of course flies in the face of all evidence and of science, and throwing the people with ME who helped him under the bus. Not knowing what he was like before he got ill, I wonder if there could indeed be some cognitive issues resulting from LongCovid, dengue fever, or the combination of the two? In which case, I hope he can get the treatment he needs because he's sadly making a public fool of himself.

 

Didn't I read this post about 20 minutes ago?

But it says it was only posted 1 minute ago?

So.....can't think of anything useful I could do with only 19 minutes of precognition.

Apparently people can save the world with only 5 minutes worth, but I have ME you see

 

See now, if you'd asked the universe it would have presented you with a plan!

 

I hope AfME did some more proofreading before submitting that letter. I spotted three mistakes and I'm normally not very thorough when it comes to proofreading.

 

His talking about how he obsessed about sugar after eating cake is telling because that is what the BPS accuse us of doing when we talk from experience. Even if some people with ME can empathise with that happening occasionally, it is not what we mean when we know from experience that we will get PEM or a flare or a crash when we do certain things.

People learn from experience all the time, like not driving during rush hour unless you really must, it is not considered an obsession even in someone with OCD.

He has extrapolated from his own experience that it is what we all feel all the time without realising that what he did was not how people with ME self manage.

 

I suspect that Garner is also confused by the unpredictability of his illness. It's difficult to predict PEM precisely. He predicted PEM, exercised and it didn't happen so he thought that his mental attitude allowed him to prevent PEM.

I also see in myself that as the illness fluctuates, during periods where I'm less affected, I can begin doubting that I was really as sick as I thought I was. I know this is not accurate because it only reflects how I feel during these good days.

If correct, this would show how stigmatizing views might be just a misunderstanding of illnesses that are easy to misunderstand due to their complexity.

 

Definitely means either of Wessely, Gerada, Vogt or the like.

 

shame they didn't speak out like this before given the similar results of the previous surveys eg
AfME time to deliver survey 2014
"Around one in five people with M.E/CFS had tried graded exercise therapy; a third said they found it
helpful or very helpful, while nearly half said it made them a bit or much worse."
https://www.actionforme.org.uk/uploads/pdfs/me-time-to-deliver-survey-report.pdf

 

I suspect that may be true of many who don't have much experience with pwME.

I don't for one minute believe that Chalder, Wessley, Sharpe, Crawley et al misunderstand. Maybe they did once at the very beginning but that time has long since passed.

The misunderstanding by other, possibly well meaning but ignorant, physicians is largely due to the copious output of a few "researchers" who should no better.

 

I am wondering where PG is going with this, if anywhere. Is he really going to set himself up as an LP practitioner, or...? Don't know how anyone could take him remotely seriously. Is he really going to keep teaching students about how to do "evidence synthesis" after claiming to be cured from a phone call?

 

Interesting. How do you know they didn't?

 

Preaching to the choir here but this is pretty typical of the mindset I saw in the LC forums over the last year, people were positive, certain they would recover. There are occasional doomsayers and they were nearly always countered by people saying it isn't helping. Many were afraid but most of those still hoped and believed. Most will have recovered, regardless of what they thought or believed.

Asserting that people with ME or LC don't recover because they don't think they can recover is a disgusting lie and anyone who says that is a disrespectful liar, full stop. Coming from a MD it should be grounds for disciplinary measures, it is completely unprofessional behavior.

https://twitter.com/user/status/1371492541783244800

 

I discovered today that Paul Garner and Lynne Turner Stokes trained in the same year at UCL as medical students. Interesting that Garner should take T-S to task in the BMJ when they are both saying the same thing - that we can forget about proper trials and follow 'lived experience' (as long as it fits your preconceptions).

 

Excuse my unkindness, but if they've got to the point that we just have to be concerned about the proof reading, then that's a quantum level leap for them. Didn't read the letter - perhaps I will.

See SOLVE is working with them - I've a lot of respect for SOLVE, so maybe things are better.

 

I think it is way too early to be conflating the two. Especially as both are conditions based on symptoms.

Misdiagnosis in pwME is common. When I assess and reaseess patients' symptoms (I ask about more than 70). The symptoms of other conditions like Addison's disease, chronic tick borne infections, chronic daily migraine can be indistinguishable from pwME.

Subgroups of patients with different objective findings need to be examined otherwise there will likely be to much heretogeniety.

Conflating the two risks all people with long COVID being psychologised in the longer term if little of substance is found biomedically. This happened to pw Gulf war illness. One third of all the troops that were made battle ready (deployed or not) remain ill after the first Gulf War. Wessely et al stepped in early here and took over 'research'. It didn't go well.

I do hope that more enquiring minds and newer knowledge and investigate techniques will be used to take the science on. But I fear that if little progress happens quickly from a scientific perspective then long COVID patients will go the same way as pwME, GWI, the Royal Free outbreak. Basically abandoned by the medical profession and researchers to the psychosocial brigade Neatly filling the vacuum.

 

This has been Wessely et al's mantra for decades. And they have been believed by many in authority over the years. Providing a convenient panacea to problems whilst actually achieving nothing (and sometimes causing a lot of harm). I guess to many people who struggle coping with uncertainty, are intolerant of witnessing suffering and get bored or feel helpless when they can't take action are easily seduced.

Perhaps there is a growing groundswell of resistance to this in the medical world? I hope so.