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

[Barry]

If you're saying that many patients are aware of problems with the claims coming from people like Wessely and Sharpe, then I'd agree. But I meant that we don't know how Long Covid patients should respond to their own illness. eg: while we're aware of the spin and misrepresentations surrounding GET that's not the same as knowing whether or not a Long Covid patient might improve with a form of GET themselves. Things that a long-term patient finds useful are less likely to be appropriate for a patient who was newly ill and facing a high chance of natural improvement. I think that warning them of the way evidence has been spun is likely to be useful but that doesn't lead to useful knowledge about how any individual patient should be managing their symptoms.

Yes I agree. Overlap of symptoms, and of progression of symptoms, in no way means the underlying conditions are necessarily the same, and we need to be careful to not fall into a trap of our own making - some things we know and claim to be true for ME/CFS, in due course possibly proving false for Long Covid ... wouldn't that be an unwelcome boost to the BPS brigade, if they could prove us wrong in some way regarding Long Covid. We should only ever make claims we can be confident of, and be very wary of being over confident.

 

[Trish]

This is so depressing. I think of all the friends, families, carers, clinicians - watching and believing, and feeling justified in gaslighting us.

And above all I think of all of us, and those with long Covid (who are not among the lucky ones like Garner who was recovering anyway) for whom exercise will cause harm.

I feel like weeping for us all.

I feel too old and sick to go on fighting this crap.

 

[Barry]

I feel like weeping for us all.

I feel too old and sick to go on fighting this crap.

I know what you mean.

 

[Hoopoe]

This is so depressing. I think of all the friends, families, carers, clinicians - watching and believing, and feeling justified in gaslighting us.

Yes it's horrible that in the media there are these nonchalant conversations about whether patients are imagining it, making themselves ill with their beliefs, able to recover but choosing not to and so on. It's not normal. One shouldn't propose such ideas without some kind of evidence.

 

[Lilas]

Dear Trish

 

[DokaGirl]

Can I ask: Were you doing this independently of any medical advice or direction? Or was it part of a treatment plan?

Needless to say please ignore if such things are not for public consumption.

Thanks for the question @Barry

From a young age, I exercised several times per week. My exercise with gradual onset and beyond has not been medically recommended, nor guided. Physicians approved of my active lifestyle, but never suggested it as a treatment for ME, or anything else.

 

[Sly Saint]

Might be worth re-watching and complaining to the BBC if the reporting wasn't balanced.

many tried with the last piece the BBC ran with Garner and Gerada.
Clearly made no difference, except maybe this time they allowed CS to comment, although as others have pointed out, his interview might have been edited.

I think of all the friends, families, carers, clinicians - watching and believing, and feeling justified in gaslighting us.

It's becoming quite obvious, particularly in recent months, that the whole country is being gaslighted.
(not sure if that's grammatically correct?) and we are being swept away in this tsunami of 'mental health' propaganda.
I'm not dissing those with genuine mental health issues, but how many people are being persuaded that they need 'help' (when in fact they are just reacting 'normally' to the current situation), which may actually result in them becoming mentally ill as a consequence; or, as has been happening for a while, having physical symptoms dismissed and not being correctly diagnosed.

 

[Andy]

This is so depressing. I think of all the friends, families, carers, clinicians - watching and believing, and feeling justified in gaslighting us.

And above all I think of all of us, and those with long Covid (who are not among the lucky ones like Garner who was recovering anyway) for whom exercise will cause harm.

I feel like weeping for us all.

I feel too old and sick to go on fighting this crap.

I can understand why you feel that way but I'd encourage you to contrast this with all of the progress that has been made in recent years. No, the progress isn't sufficient and we will need to keep pushing forward, but when the NICE draft guideline is almost better than we could have realistically hoped for, our charities working in a more coordinated way, the Priority Setting Partnership due to start, DecodeME set to open recruitment later this year, and add to that the huge spotlight that Long Covid is shining on post-infectious illness, then, even though Paul Garner's witterings are intensely annoying, I think we have cause for genuine optimism. We will undoubtedly suffer setbacks along the way, but I believe that we now have genuine forward momentum.

 

[lunarainbows]

I was just thinking earlier. Why is it that Paul Garner feels the need to do this? Is he thinking, even for a second, of the people who have severe and very severe ME who are confined to their beds or are less able or unable to eat, or sit up, or are paralysed, because of exercise? Does he realise that every time he says these kinds of words, their friends and family and doctors are going to see it, and treat them worse or deny them the proper care and instead neglect them, like doctors tend to do? Does he think each of them are imagining their symptoms too? and it can be made better by thinking positively? Really? It is so cruel.

Before, it was just sharpe and Wessely, but now he is an influential patient researcher, and the BPS people suddenly have an amazing asset. He’s hurting so many people, and genuinely not even helping anyone, because those who would’ve got better would’ve anyway. I don’t understand his motivation, when just a few months ago he was saying how the ME community were marginalised. Just because he got better? I just know the BBC is going to do more of this in the next few months..The BBC too are exhibiting a special kind of cruelty. Already we have so little, already so marginalised and neglected, and it’s just like “kicking someone when they are down”.

 

[Trish]

Thanks all, and you're right, @Andy, there are positive signs of hope. I'm just having a bad day and this crap hit me harder than usual.

Crossposted with lunarainbows, I agree, it is truly cruel and incomprehensible that they can't see what harm they are doing.

 

[Esther12]

I was just thinking earlier. Why is it that Paul Garner feels the need to do this? Is he thinking, even for a second, of the people who have severe and very severe ME who are confined to their beds or are less able or unable to eat, or sit up, or are paralysed, because of exercise? Does he realise that every time he says these kinds of words, their friends and family and doctors are going to see it, and treat them worse or deny them the proper care and instead neglect them, like doctors tend to do? Does he think each of them are imagining their symptoms too? Really? It is so cruel.

I don’t understand his motivation. And before, it was just sharpe and Wessely, but now he is a “famous” influential patient researcher, and the BPS people suddenly have an amazing asset. He’s hurting so many people. And genuinely not even helping anyone, because those who would’ve got better would’ve anyway. And I just know the BBC is going to do more of this in the next few months. The BBC too are exhibiting a special kind of cruelty. Already we have so little, already so marginalised and neglected, and it’s just like “kicking someone when they are down”.

A simplistic possible model for Garner's motivations:

He talked about Long Covid and attracted the sort of ME patient who confidently talks rubbish [though a lot of the tweets I saw to him were just reasonable, supportive, cautious, etc]. Then he was told by someone connected to Recovery Norway that the negativity of ME patients was helping keep him ill and he needed to adopt a more positive attitude. On taking this approach he recovered. Then he wrote a blog about his experience of recovering by taking a more positive approach, even though he was warned that this would lead to unfair personal criticism and then some ME patients unfairly attacked him for this.

It's easy to see how some people will have encouraged him to think that there is a dangerous culture of negativity around ME that damages people's health, and that personal attacks mean that many are not strong enough to stand up against it. From his point of view I expect that he is bravely standing up against unpleasant personal attacks from those distorting science.

 

[Wonko]

Of course they can see, and hear, and read.

They 'understand' - that's the point.

No point in doing it otherwise.

 

[Invisible Woman]

A simplistic possible model for Garner's motivations:

Here's another - and this is me being very cynical and it may not be true

a) The guy claimed to be ill & I don't doubt he was. He claimed he was diagnosed with ME & I have no proof to the contrary.

b) I do find it strange that with all the publicity about PEM and exercise and ME that Garner didn't wonder that he was able to exercise quite so much and head off travelling.

c) I also find it interesting that he's now apparently the recipient of research grants based on exercise as treatment.

It is of course quite possible that there is no relationship between a & c, but I wonder.

 

[Esther12]

Here's another - and this is me being very cynical and it may not be true

a) The guy claimed to be ill & I don't doubt he was. He claimed he was diagnosed with ME & I have no proof to the contrary.

b) I do find it strange that with all the publicity about PEM and exercise and ME that Garner didn't wonder that he was able to exercise quite so much and head off travelling.

c) I also find it interesting that he's now apparently the recipient of research grants based on exercise as treatment.

It is of course quite possible that there is no relationship between a & c, but I wonder.

I'd say there's almost no chance that this was part of any long game to get funding for research. It doesn't sound close to plausible to me, even ignoring practical things like his age. It looks like it has been a really long time since he was involved in running an RCT, and he's been involved in different things since then.

 

[DokaGirl]

Exactly.

If I have a criticism of ME charities in the past it has been that I think they're over optimistic & therefore potentially misleading about recovery.

Even up until the last year or so I have read that most patients recover or at least improve in time. That's from both MEA and AfME.

I agree @Invisible Woman

Support groups have been good at providing info, except where outlook or general prognosis is concerned. Their actions although very well intentioned do not help when they convey this disease as short term, and less than devastating.

I do understand that new pwME will be overwhelmed by the fact they will likely never recover. However this is a fact borne out by proper, evidence-based science. I very much sympathize for those newly diagnosed who learn the truth. Better this than sugar coated messages that eventually turn to disdain and dismissal when recovery doesn't happen.

 

[Daisymay]

. Already we have so little, already so marginalised and neglected, and it’s just like “kicking someone when they are down”.

Over the decades the BPS lot have done this over and over again, it's the way they work, which is awful for us but also a sad and damning reflection of them.

 

[Jonathan Edwards]

I feel too old and sick to go on fighting this crap.

I often feel too old as well (being the same age) but we aren't too old. There is life in us yet.
As Andy says, a huge amount has been achieved.

Robert keeps telling me that I should write that book. It was going to about PACE and then it seemed it needed to be wider - about Cochrane and all that nonsense and not just ME. But I think it should still be through the eyes of ME - and basically about ME, even if as an illustration of a wider malaise.

I think maybe I will have to write it. Garner will now get a starring role too. The problem is going to be how to limit the cascades of clownish foot-in-mouth disease these people come out with. It may cause a degree of discomfiture for Esther12 but if I get it right I cannot really see how the pseudo-academics can complain without drawing attention to a series of irrefutable arguments demonstrating their idiocy.

I am currently preoccupied with trying to finish the digging work for a 100 metre rabbit-proof fence, which is leaving me more or less paralysed every night but I am getting there. I will have to dig out the book file next week.

 

[Shinygleamy]

Here's another - and this is me being very cynical and it may not be true

a) The guy claimed to be ill & I don't doubt he was. He claimed he was diagnosed with ME & I have no proof to the contrary.

b) I do find it strange that with all the publicity about PEM and exercise and ME that Garner didn't wonder that he was able to exercise quite so much and head off travelling.

c) I also find it interesting that he's now apparently the recipient of research grants based on exercise as treatment.

It is of course quite possible that there is no relationship between a & c, but I wonder.

I think Garner had connections with the BPs lot before this whole thing happened, and he's now showing what he always believed

 

[FMMM1]

This is so depressing. I think of all the friends, families, carers, clinicians - watching and believing, and feeling justified in gaslighting us.

And above all I think of all of us, and those with long Covid (who are not among the lucky ones like Garner who was recovering anyway) for whom exercise will cause harm.

I feel like weeping for us all.

I feel too old and sick to go on fighting this crap.

My initial impression was that it was embarrassing i.e. Paul Garner doing dumbbells on his lawn ---- I thought he was deluded. I actually wondered if he'd been ill.

I need to watch it properly, it was like one of those programs that make you cringe, so I didn't watch it properly --- why was he given the opportunity?

 

[Hoopoe]

My own explanation for Garner's behaviour:

Identifying with ME threatened his friendships and self-image. The illness was also terrifying. When it passed after a few months, he created a new narrative that fit his old identity and the belief system of his old social circle. In this new narrative, he is no terrified patient that has lost control of his life, but someone who looked down the barrel of the gun and disarmed it.

The illness was an experience so at odds with his self-image that he had to rewrite history afterwards.

Someone with his training should have no difficulty understanding the problems with extrapolating from n=1 stories or the high chance of recovery in most postviral syndromes. That he is blind to this in public reveals a bias.