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

We can't do moderate exercise either and she must know that, so it sounds like she is the one who is misunderstood when it is actually irrelevant to what anyone is saying.

 

I take your point but alos think that to many people their roles as 'influential people' are a bit confused when they're just reporting their 'lived experience' (as Gerada emphasises).

Would most people think that Garner was punching - up or down? Is it innately worse to imply that you improved your health by being positive rather than, for example, that your health was made worse by GET?

 

Has PG come out and even acknowledged our lived experiences as pwME after reading all the well written comments addressed to him on the BMJ articles? If not, then he deserves everything coming to him, he put himself 'out there'.

 

One other thing re Garner - as people keep noting, it's an N=1 personal story. It shouldn't matter than much. Why draw attention to it as if it's an important thing?

It was only likely to be important because Garner is well connected to other influential figures in EBM, and hopefully the more reasonable ones of them would realise the limited value of his personal story. Do people think that those who know Garner personally are going to be left feeling more sympathetic to the concerns of ME 'activists' after seeing the response to Garner's blog?

What does that mean? If you're implying that he deserves every one of the unpleasant tweets that has been sent to him then I think that's a far worse thing to say than anything Garner has said.

 

Didnt PG he have a sister with ME? I wonder the lack of empathy & tone deafness then..

@Esther12
What's EBM?

Edit grammar

 

Sorry - Evidence Based Medicine. It can be seen as an 'ideal/philosophy' underpinning an approach to medicine, it can still function as a label for a particular interconnected group of doctors/researchers but as it has gained influence it can almost be synonymous for 'mainstream western medicine'.

 

A pretty good explanation for 'why' is that some ME patients think it's okay to act appallingly. The problems with Garner's blog are far less clear cut and will also partly depend on ones views on some genuinely disputable matters.

 

Again, I don't know what was written on twitter, but when pwME have been harmed, dismissed and gaslighted for decades, then that's the frustration playing out. As a HEALTH care professional, he should at least try to enlightened himself regarding the history of ME (particularly in the UK) or shut it.

 

I am puzzled that you are tone deaf to this one @Esther12.

When I read Garner's last blog I thought it was appalling, as evident from my response.
It was not what he said had happened. It was the inuendo, or at least apparent inuendo (for which there was no excuse).
Basically it was the bit about listening ti people who had got better and not those who were still ill, in the context. No doctor should be saying that sort of thing in the BMJ.

I don't know what other academics might think. No doubt the BPS groupies will continue to group. But if I had seen this as someone with no interest in ME or Covid (as was the case seven years ago) I think my response would have been 'Good God what a complete clown to string together this interpretation of events. And rude with it.'

 

There seem to be a lot of assumptions in there that are not widely held by those with power in EBM, and over us:

That the evidence is settled/clear and shows that GET is not effective.
That the evidence is settled/clear and shows that positive thinking makes no difference to physical diseases including ME and cancer.
That the evidence is settled/clear and shows that ME is a 'physical' disease (we all know how convoluted that one can get).
That we do not yet have good evidence to show that GET is safe (though I think this is a more widely held view).
That an anecdote claiming recovery is caused by positive thinking, and/or GET is a judgement on others who try it and fail to recover.

If I understood you, I think that last one is a real problem actually. Doesn't that mean you'd think that that any patient who believes that they recovered via GET or positive thinking is innately insulting those patients who try and fail to recover when they tell their story? That seems really unreasonable to me. It sounds like something Vogt would claim patients believe and that I'd think was a smear. We don't know what ME/CFS is, or that those given the diagnosis all have the same issues. It's easy to see how people could believe that positive thinking and GET helped (or harmed) them when it did not, but it's also possible that some people were helped to recover with GET or positive thinking, and that shouldn't reflect poorly on those who do not recover.

In practical terms, it's very often our problem, and we're the ones who pay the price for it.

I don't know about the other two, but with Gerada, does anyone expect her to listen? My assumption is that she's saying things that are intended to seem reasonable to those with power (whose judgements really matter) but are also likely to rile up patients and encourage responses that will seem unreasonable and help discredit ME 'activists'. It could be that, if Garner got outside advice on his blog, that some of the suggested tone and implications were hoped to have a similar affect. And in response, some people have behaved in exactly the right way to strengthen Wessely etc, and harm patients.

edit: It's a common political trick to say something that the majority will see as inoffensive, but that your opponents will take umbrage with in the hope that any over-reaction will make your opponents seem unreasonable and censorious, thus increasing your own popular support.

 

One of the first things I did when my daughter became ill was to find accounts of people who had recovered. There seemed to be a huge variety of stories and nothing obvious to folllow that I could match with biomedical understanding.

I remember Ron Davis, several years ago also asking for people who had recovered to get in touch with him, so he could see if there was a pattern. I believe that someone of a similar age to Whitney had become ill at around the same time in a nearby lab, but had recovered.

 

There is an analogue to the statement @Esther makes regarding pwME being not so nice to PG. Unfortunately it comes from a black woman talking about why black people are angry enough to burn things down (and therefore may not be appropriate because of the politics rule).

But essentially she says that every time black people built something it was torn down by white people (specifically referring to I think, Tulsa Oklahoma).

Honestly, I see parallels here. There are pwME in extreme circumstances. Some live on the margins economically, socially, isolated and marginalised. Some are carers for very sick children. Some are adults who became sick as children and missed so much. And so much else. On balance yes it is better to be civil. IMO there are moments when this doesn't apply.

PG is someone of privilege who is also a high profile epidemiologist who has been absolutely vile to a vulnerable community. People are hurt again and again by this group. A civil response may be more civil but it would not be equal to the real cruelty being meted out by in this instance PG et al.

The question is will pwME loose by getting angry? Is there more to gain by being civil? I'm not sure anyone has a definitive answer to that. But I think the anger (if perhaps sometimes poorly expressed) is justified. And I suppose does PG deserve always only civility in response to anything he says no matter how vile?

His personal experience was not just a factual account but highly charged emotionally (eg. looking down the barrel of a gun). And if one argues that he had a bizarre experience he has shown little grace in the face of it and no apology. And he was in Granada scuba-diving apparently which seems a contradiction as well.

 

I also believe that people with ME consistently downplay their level of disability.

When I was helping a friend with her PIP application, I had to keep asking/reminding her whether she could do the activities they ask about. She was so used to adapting her ways, to manage as much as she could, that she needed prompting to acknowledge her difficulties.

I would consider that she is borderline severe. She can only get out if taken by family or friend in car or wheelchair and spends more time horizontal in bed than upright, nearly always with raised legs. Her cognitive function is also severely impaired and she has really bad pain nearly all the time.

If asked, she would describe herself as moderate. I realise there are many factors in preferring that "label".

 

It's not that I'm deaf to the problems with tone, but I think that the way some have responded more to their interpretations of the tone, rather than just the substance, is likely to be counter-productive.

Tone can be difficult to interpret and different people can experience it in different ways depending on their own background and values. Generally we need to make progress with those whose background and values are likely to be closer to Garner's than our own.

I have my own views about the tone of Garner's blog, and I certainly think that there are reasons for concern. But I don't think it's particularly important. I think that the responses to Garner's blog are more likely to cause us problems than Garner's blog.

 

This is the whole thing. He cannot any longer be objective about his condition because objectivity would threaten his own recovery. It's part of the deal that he doesn't listen to those who have not recovered and the identification of post covid/ME/CFS with "that which the process addresses" means he can, or indeed must in good conscious, take the message to the uninitiated. He is no longer an objective academic or doctor, but a doctor evangelist, presenting not just a method for recovery but preaching a method which requires belief, commitment and a"faith" community of the recovered.

He may be a very nice man for all that, but his mode of recovery precludes professional objectivity.
This method may help some but it must not be allowed to "own" the term ME.

I don't know how the BMJ can handle this type of thing. They want people to get better but this stuff does not fit in with objective medicine.

 

Background and values are different things.

Garner and I have similar backgrounds in medical education. From that perspective what he wrote is laughable. If it produced rude comments that would be expected.

Garner and I have completely different values. He appears to have the values of someone who puts fad and self-engrossment above rational argument and other people.

I don't think you can expect to achieve anything trying to soft soap people with those values. They don't understand rational argument. They don't understand that PACE is rubbish. We have seen that.

The only people worth influencing are the people with his background but our values. I don't think they will be out off by the most lurid comments from patients. Doctors are used to patients letting off steam. The idea that ME patients are specially horrible is after all a fiction manufactured by the BPS people.

I remember a phrase from Wessely - something like 'I realise I could have handled some things better'. I strongly suspect the reason why we are hearing rather little from Wessely himself is that he learnt that lesson. If you believe an illness is all in the mind (while pretending not) and can be cred by positive thinking then you don't go around complaining about the patients. The rational thing to do is to recognise that it being all in their minds they are likely to come out with all sorts of complaints when you say it is. (sic)

In other words, Wessely realised that if he was right he had completely screwed up the way to handle things. He was wrong but that is beside the point. Garner is making the same mistake, or at least falling in line with those who do. Vogt has been doing it all along - in spades.

Even most of my old BPSish colleagues I think would see Garner's blog as an irritating nonsense.

 

Sure, but he wasn't just doing this. He's a scientist, talking scientific mumbo jumbo; specifically, a scientist with a professional interest in evidence, failing to look at any evidence.

He criticised sick people who tried really hard, sometimes to their own detriment, to help him.

It's innately worse to raise the profile of, and ascribe your recovery to, an intervention which is accepted as being at best ineffective and at worst likely to harm people with post-viral illnesses.

Especially when you know that the people who have suffered the most harm have spent decades fighting against the powerful vested interests who ensured it was kept in place; are still at a critical point in the process of enacting change; and that your claims will give a new platform to those vested interests.

 

This is a unique situation though isnt it? Correct me if I am wrong I am a bit hazy about this but wasnt Garner involved in Cochrane's reviews and didnt Cochrane's treatment of GET require revision after criticism as a first step towards revising NICE guidance? He has a major vested interest in the narrative he is pushing through personal anecdote.

As I understand it what he is doing deserves criticism and then some, so if that is not clear to the public then the case for criticising his blog should be made openly.

Though civilly of course, it is not a winning strategy to be abusive, I quite agree.