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Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.
InitialConditions
Senior Member (Voting Rights)
I literally forgot about this email threat Paul Garner supposedly received: https://www.livpost.co.uk/p/professor-paul-garner-was-delighted
I would not put it past him to make up something like this.
I would not put it past him to make up something like this.
Who is Garner to tell us the same thing?
You are aware that Garner has never received a formal ME/CFS diagnosis?
Yet he is endlessly lecturing those of us who did about what we are experiencing and how we should manage it, and viciously defaming us when we don't fall at his feet in gratitude for his strong leadership and wise words.
He came to the ME/CFS community when he was first sick and got plenty of support and advice. Go read his reactions and comments back then. Very, very different from now. Then, for reasons still not clear, he turned on us without warning in a very nasty dishonest way, and has been unrelentingly hostile and abusive to us ever since.
Are we not allowed to defend ourselves against this extraordinarily toxic and totally unjustified assault on our reputations and lives?
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Jonathan Edwards
Senior Member (Voting Rights)
Apart from anything Garner has behaved in a totally unprofessional way. As a physician you do not malign members of the public, however pathological you may think their behaviour is. In fact the more pathological you think their behaviour is the more you should have sympathy and treat them courteously. Exactly the same thing applied to Simon Wessely, Michael Sharpe and Esther Crawley when they were denigrating members of the public.
Mij
Senior Member (Voting Rights)
InitialConditions
Senior Member (Voting Rights)
My main issues with Garner, aside from his behaviour and patient bating, is that he was ill for barely six months. Anyone with rudimentary knowledge of post-viral illness should understand that even at six months the probability of natural recovery is high. Whether the brain retraining / BPS stuff helped him, we might never know, but it seems he could have fallen into the trap of attributing his recovery to whatever was happening at that time. It's clear from the twists and turns in his story that he's impressionable.
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I think I'm just as offended by the following:
I think I was there enough at the time, even though I didn't really read anything from or about him on fb or twitter bar the odd bit with a pinch of salt, and got the gist he was being given advice and a lot of support and welcoming, but don't remember him being specifically held up as a hero?
Peter T
Senior Member (Voting Rights)
Welcome @Friendswithme. It is good we have a range of views here and discuss things through.
Though the research is limited it is generally said that only around 6% recover from ME. It is most frustrating that no one attempts to examine why these people recover when the majority don’t. I have no objection to such as Garner believing recovery is possible, but if he is going to advocate people undertake specific treatments he should be basing it on good science not bad research and limited anecdotes. The research into exercise and brain retraining is very poor, it if anything demonstrates these approaches are ineffective other than short term uplift on subjective measures and there is significant data on people being made worse by these approaches.
Success stories may give hints for serious research, but they are also fodder for cultists and snake oil peddlers. If suggesting an approach that may possibly help a few but will definitely harm a lot, its advocates should first establish a reliable way of deciding who will fall into which category.
Some twenty five years ago, and five years into my ME, I believed I had recovered, but after several years I had a bad dose of presumed seasonal flue and relapsed to a level more severe than before. I had when improving tried a range of things, but none of those things have any subsequent effect after my relapse. If I had presented any of these things as a cure for when I was in remission I quite rightly should be subject to critical analysis especially as I can now confirm they produce no long term improvement for me.
Garner has said confusing and possible contradictory things, but he is also writing articles, seeking out media experiences, actively campaigning against the current NICE guidelines based on much more rigorous science than his pronouncements and presumably fighting to block any withdrawal or rewrite of the flawed Cochrane exercise review. Through out he uses his own experience to justify his position, so quite rightly this should be subject to critical analysis.
MrMagoo
Senior Member (Voting Rights)
I do remember him, not necessarily a hero but he absolutely used his platform to say that the ME community has been dealing with this and been ignored or some such. The Guardian article I posted before ends with him saying doctors must listen to patients, especially women who have been dismissed by Drs, or some such. He was almost an ally.
Peter T
Senior Member (Voting Rights)
To be fair, when he was in his ‘pacing is miraculous’ phase and engaging widely with the ME/CFS online community, there was a lot of enthusiasm that a member of the medical establishment seemed to get the concept of PEM and was advocating for pacing. Whether ‘hero’ is the right term or not, he was shared widely in ME social media as a positive example.
Then I don’t understand what happened, it was round about the time he had a phone conversation with someone in Sweden, possibly a specific high profile Lightning Process practitioner, things suddenly switched. He reported that people with ME had turned against him, but my casual observation and possibly unreliable impression was that he started attacking people for their views that increasing exercise should be contra indicated with PEM and for their advocating pacing. I can not be certain which came first, but I would argue that Garner by presenting his personal story and time line as significantly contributing to his professional pronouncements on ME and Long Covid has made critical analysis of his account part of appropriate scientific discourse.
Their systems are based on belief or at least suspension of disbelief in cure X, Y or Z and on conformity to certain attitudes and practices. No point in objective discussion as objective analysis may undermine belief, which is part and parcel of their healing. Closed circuit. But we outside must simply persist in maintaining that such systems differ, that they cannot all be objectively right and comprehensive and thta for some/many they may have little relevance at all. But don't expect an objective response.
It doesn't have to fit as long as he believes it does. Belief against the facts will do to bget the effect (for susceptible individuals). Objective truth is secondary to effect. Did all those CBT/GET advocates really believe it was all deconditioning and lack of exercise. All ruse medicine for a condition arising "from the mind" but no one should be told this so dissenters must be shut down, from which all the derision of patients also arises. They are not to be reasoned with.
rvallee
Senior Member (Voting Rights)
LMAO aside from citing something from WWI, if Steele claims to have been healed by the LP, how did her being 'trolled' (i.e. criticized for making absurd claims) make her crash from an illness she recovered from?
And if hope helps people recover, then this would be worth of a Nobel prize in medicine and news to everyone with hope who didn't. Which is most people. Literally most people hope they will recover from all illnesses. OK maybe 99%. This is completely superstitious nonsense. How this dude is not ostracized by his peers is a massive embarrassment for this profession.
May not be relevant, my ability to even slightly read a scientific research paper, never mind understand it, was limited to null prior to my treatment under the NHS 12 years ago, and it's not much better now. However, even BACME are citing Madi Hornig et al from 2015 Distinct plasma immune signatures in ME/CFS are present early in the course of illness - PMC in their Dysregulation documentation.
Wasn't this the paper she explained showed the immune response dropping off a cliff edge after 2 years? 9 years ago.
Wasn't this the paper she explained showed the immune response dropping off a cliff edge after 2 years? 9 years ago.
rvallee
Senior Member (Voting Rights)
They're all silenced. You can hear all about it on the all-exclusive "WE'VE BEEN SILENCED!" channel, featuring 24/7 footage, reports, live shows and tambolas (? really? OK then) and documentaries about special retreats, conferences and festivals of the silenced, live on all channels, all networks!
Also: books, magazines and special reports, with special guest appearances from very influential people who make sure this silencing does not go unpunished and work behind the scenes at helping them rebuild after the tragedy of their silencing, by making sure the thing they have been silenced for only being able to speak about it on hundreds of occasions continues to have legal force and remains the only game in town.
Would you like to know more?
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rvallee
Senior Member (Voting Rights)
You remember it well, that definitely did not happen. He had a platform being a professor of medicine. He was able to publish his own personal musings multiple times in the BMJ and national newspapers, something that ordinary patients have no chance of achieving in a whole lifetime. Some people hoped it would help the cause. That's about it.
Perhaps we need a catchy slogan that makes it clear that ‘we’ are not attacking the persons experience and choices, nor the utility of generic supportive therapies when used as just that, but that we oppose anyone with a platform using it to reach an audience to promote the benefits of unproven treatments or treatments that have historically been used against us, etc etc etc….