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

"I did this by listening to people that have recovered from CFS/ME, not people that are still unwell; and by understanding that our unconscious normal thoughts and feelings influence the symptoms we experience."

Esther your interpretation is to me incomprehensible. Hes clearly implying that you should not listen to those still ill. As he says he listened to some healthy lightning process guru "NOT people that are still unwell". Because most of these people dont believe "that our unconscious normal thoughts and feelings influence the symptoms we experience.".

Now he even has the audacity to victimize himself from "ME-activists" which according to him is destroying the conversation, when he himself has completely ignored every comment received on twitter after his embarrassing tirades against patients.

 

"Hes clearly implying that you should not listen to those still ill."

About what?

I think he's implying that those who are still ill are not the best sources of useful information on how to recover. That's very different from saying that they should not be listened to about anything. There are still problems with it in itself, and in the context of a history where people ill with ME/CFS have been so marginalised and ignored even on matters directly affecting their own life, but he is not saying that you should not listen to those still ill and if he gets criticised for saying that then this will seem particularly unreasonable to those unaware of, or unsympathetic to, the history.

I don't think his blog was as clearly 'nasty' as some seem to. There were problems with it, but it's hard to know if he even had a good enough understanding of the context of his words to appreciate what all those problems were.

 

@Esther12 i am genuinely confused as to how you’re reading his blog. Imagine if, on his recovery from cancer, and that you had cancer, and were direly ill and suffering from it, and he says he’s writing to his fellow ill people -

"I have recovered. I did this by listening to people that have recovered from cancer, not people that are still unwell; and by understanding that our unconscious normal thoughts and feelings influence the symptoms we experience."

Or how about if you had MND?

“I have recovered. I did this by listening to people that have recovered from Motor Neurone Disease, not people that are still unwell; and by understanding that our unconscious normal thoughts and feelings influence the symptoms we experience."

Or MS?

“I have recovered. I did this by listening to people that have recovered from MS, not people that are still unwell; and by understanding that our unconscious normal thoughts and feelings influence the symptoms we experience."

Would you be ok with this? And would others be ok with this? His words are unconscionable. It is awful, quite honestly, when I’m lying in bed here, severely ill, in the dark, not recovered, to hear words like that from a figure who is supposed to be someone influential in evidence based medicine, and a professor, who signed his blog as such, and who got help from the ME community initially. I have not one ounce of sympathy left in me to spare for him, for what he has said or done.

 

If someone had recovered from MND that would be a medical miracle and it would be well worth listening to them about their experiences.

ME/CFS is quite different to that. We have various criteria and I'm doubtful any of them are likely to capture patients who all only suffer from the same problem. Some people recover. A lot of people recover from PVFS, especially in the first two years. From the evidence available it seems unlikely that 'understanding that our unconscious normal thoughts and feelings influence the symptoms we experience' has much of an impact on recovery rates, but maybe some people find it useful. Maybe no-one finds it useful and Garner is just wrong. Who knows? He has shared his view of his personal story and it's shouldn't really matter much. Does anyone think that any good would come of some sort of campaigning on this issue?


There are a huge range of personal stories relating to ME/CFS, about people recovering, getting worse, quack treatments helping people, making people worse, expensive supplements, and so on. I know it's upsetting being in a difficult situation, but these various stories and the perspectives should not be important.

 

@Esther12 You are missing the point. It’s not about someone recovering from MND (or ME/CFS or any other condition) and trying to do actual scientific research into what helped them recover.

The point is that he has got better at the same time as undertaking psuedoscientific methods, which you know. This pseudoscientific method has also harmed a significant subset of patients, if it is LP or something similar. Certainly the methods he advocate can make people very ill (see what he says about his exercising). He then attributes his recovery to those methods, tells his fellow long-coviders that he got better by listening to those with ME who got better, not those who are still ill. Yet when talking about recovery, you do look at those who are still ill - for which the “treatment” didn’t work, that’s how you assess clinical trials after all. As a scientist, he should know this. Apart from the glaring issues with science though, the moral underpinnings of this - getting better by only talking to those who got better - not listening to those who are worse or the same - is also morally very wrong and I’m not sure what more I’m meant to say to that? I just don’t know how you’re reading this so differently to me.

 

That literally IS what he is implying, and the subsequent tirades on social media further prove his disgust of ME-patients who have an opinion. I think there is no point debating this further if we can have two such completely different interpretations of the same sentence.

 

Ignoring people is not treating them with respect. It is my understanding that, by default, people are supposed to be treated with respect, unless they, as individuals, not as a group, show that this is not appropriate.

Not doing so is how 'isms develop.

I am puzzled why some medical professionals seem to think that the only thing that matters is the people that get better, and the people who don't, don't matter.

In fact less than don't matter.

These professions only want to follow what is laid down in medical scripture, and if it works it's all good, they are 'heroes' - but if it doesn't then it's not their problem, the correct guidelines/script/rituals were performed, if the patient did not improve then it's a divine judgement/poor moral character/whatever, as the duly appointed representative of the church of medicine performed the ritual correctly.

That isn't medicine, at least as it's popularly understood, it's religion.

Why do most of them, the medical professionals, have absolutely no interest in what should be the more interesting area, why aren't the ones that don't get better, getting better.

Instead all I see is entire sections of medicine which only seem to exist to blame, and punish, the patient for not getting better when the correct ritual hasn't worked.

Do any of these medical professionals actually have any understanding, or desire to understand, what is actually going on, beyond the medical rituals they are taught from textbooks?

Do none of them have any curiosity?

 

It's certainly not a blog about scientific research. I saw his blogs as personal story type things, often with some folk science mixed in. They were more like public diary entries than medical papers and that's how I judged them. People can question if the BMJ should publish things like that, but that was not a new problem with his January blog.

"Certainly the methods he advocate can make people very ill (see what he says about his exercising)." I think that you're right, but we really don't have good evidence on much about what makes people worse and better, and there are serious reasons for concern about much of the evidence we do have. I feel wary using 'certainly' for almost anything.

He gave his view that, for his recovery: "I did this by listening to people that have recovered from CFS/ME, not people that are still unwell; and by understanding that our unconscious normal thoughts and feelings influence the symptoms we experience." I think that there are issues with the way he presents his narrative, but I don't think we have a right to say that he cannot believe that he recovered as a result of listening to people who have recovered from CFS/ME, not those who are still ill.

I've not been commenting on his subsequent posts, some of which may have been related to the response to his initial blog. Do you think that his blog said that you should not listen to those who are still ill on matters like how they would want to be treated? I don't.

There's no mention of 'ignore' in his blog.

I agree with a lot of your other points.

Generally, I think that people can tend to deify those viewed as 'successful' and recovering from an illness is seen as a success. Lots of people tend to underestimate the importance of luck in life, and that can make things even more difficult for those in unfortunate situations. Also, it's easy to underestimate ones own luck, or judge ourselves only against those around us, rather than those born in more deprived countries or eras. It's also possible to ignore how some successes coming from people making impressive sacrifices and efforts. There are so many ways to get life wrong and for some reason I started listing them!

 

So not listening means a different thing to ignoring as far as you are concerned?
"I did this by listening to people that have recovered from CFS/ME, not people that are still unwell"

Nasty/Nice is a/the name for the approach/philosophy I referenced in post 781. It is not my term.

 

"I learnt to paint by listening to my art teachers, not my parents" is not the same as saying "ignore your parents". That covers up some of the problems there but hopefully illustrates my point.

Regardless of the term used I just don't think that the blog is as bad as some seem to and think that the ways in which it is bad are difficult to clearly explain to those who don't know all the history and context.

 

Recovery Norway always repeat the mantra "Listen to those that got better", while undermining those patients that share their negative experiences with LP by saying we didn't want to get better, or weren't commited enough.

I had a psychologist, which had a collegue that was a Lightning Process coach. One of the first things this psychologist said to me in our first session, before she knew anything about me, and weather I read on ME forums or not was:

"Don't go on ME forums. I have taken a look on those myself, and I have seen how negative and categorical those patients are. Instead, you should talk to the people who got better, and hear what they did to get better". The exact thing that Recovery Norway says all the time, as if her collegue had rehearsed the manuscript with her over lunch.

A psychologist in the Norwegian debate has said that patients don't recover because they don't believe in the BPS understanding and "live on a different planet" and that "in the real world patients recover following the BPS recommendations".

I think there's attempts from many directions to erase patients negative experiences with the BPS approach. Assuming Garner has been in contact with Live Landmark, then it's not surprising he has learned this script too. I have never heard those words spoken about any other illness.

If he really was so naive that he did not know about all of this, he has every opportunity to clarify and apologize.

 

"I did this by listening to people that have recovered from CFS/ME, not people that are still unwell; and by understanding that our unconscious normal thoughts and feelings influence the symptoms we experience."

I think it's weird to highlight what you did not do, if the only point your trying to get across is what you did do. There's no reason to specifically state that you did not listen to those who stay ill, unless you are trying to say that not listening to them is part of your success. To me that is implying that those of us who stay ill say harmful things or hold people back from recovery. Which has been said for years by people that try to silence our experience.

 

I agree with most of that. I'd add that I expect that some of the hostile response he received will have made him more supportive of the views promoted by Recovery Norway, and less likely to apologise. If the response to his first blog had been better then I'd be more comfortable criticising Garner for not having listened to the people raising concerns more carefully. As Sarah94 said, vitriol is often to be expected from people who have been treated badly.

Yes, I agree. Also bits like this play into that theme and the history of marginalising ME patients: "The ME community sent me unsolicited emails about mast cell deactivation, biological causes of my illness, and told me to rest."

There are ME patients who say stupid things and promote misinformation, but there seems to have been quite a shift in the way Garner describes the information he was getting from ME patients. There are lots of things about the blog and the way Garner presents his story that can be criticised. I just don't think it's that important and I think that a lot of those criticisms are complicated and difficult to explain properly and any misunderstanding is going to be a particular problem. It's also difficult to know to what extent Garner understood the problems with his blog. My instinct is to be extra generous to someone who has had such an odd year.

There's a school ground 'game' where people get as close as they can to someone else without touching them, and then wait for them to over-react in a way that can be used against them. I've seen people talk about a verbal form of this being played by the 'alt right' on social media with regards to race, trans issues, etc. Saying provocative things that are still defensible, and that often only the minority group targeted will have a real problem with so any over-reaction is hoped to leave them more isolated from mainstream society. I've wondered if some peoples' social media posts are like that. It wouldn't amaze me if Garner had some outside advice on his blog, but I really have no idea. There are parts to it that I am not surprised some patients have reacted badly to, and we can't know if any of that was a result of anyones intent. It could be purely coincidental and Garner has just been unlucky (or lucky, depending on ones viewpoint). Regardless, it makes sense to always try to be careful in ones criticisms and criticise exactly what was said rather than an impression of what was meant.

 

I think this debate is on the whole irrelevant, yes if m.e. folks swear it'll be used as an example against us but in reality we have no power whatsoever. Whether we behave badly or well doesn't actually make any difference because we are a persecuted group. If you look at descrimination against other groups in history. Worrying over whether to be nice or nasty to your persecutors is not the way to think about things. Look at the way black people are treated and the responses. This is the same debate.
Ps I would note that AIDs patients became extremely nasty but it didn't stop them from being treated correctly in the end. If M.E. folks are being judged overall, the conclusion would be of an extremely well behaved and polite bunch of people.

 

ME/CFS is not motor neurone disease but that doesn't make it acceptable to treat it like it's something patients inflict on themselves. Or something that you can wish or think yourself out of. Or any similar things.

There is a big a problem with ME/CFS not being treated like other illnesses. Patients shouldn't allow this to be normal or they become complicit in their own discrimination. I think you would struggle to find a doctor saying the things Garner said about other better understood illnesses in a medical journal.

 

I'm sorry @Esther12 but that seems like sophistry to me.

Your quote simple doesn't equate to what Garner is saying in my view.

The art quote doesn't say ignore your parents but does imply that on the subject of art if both your parents and teacher hold contradictory views then listen to your teacher.

In this quote he is clearly saying that in the subject of their illness & recovery we should listen to those who got well over and above those who are still ill.

Why should the opinion of someone who may or may not have the same illness as me carry more weight than mine simply because they have recovered? Especially as they may have had a self limiting condition in the first place whereas I did not. They may not even have recovered but may simply be in a remission.

 

Yup.

Also – and side-stepping the fact that 'unconscious thoughts' is a contradiction in terms – have we ever claimed that our thoughts don't have an influence on our symptoms? It would be bizarre to claim that attitude doesn't influence experience.

It just doesn't cure illness.

 

I believe this easy-to-read article on tone policing is relevant to the discussion:

No, We Won’t Calm Down – Tone Policing Is Just Another Way to Protect Privilege
https://everydayfeminism.com/2015/12/tone-policing-and-privilege/

ETA: I was also thinking that it would be interesting to have a discussion about respectability politics in general, but maybe in a separate thread.

 

And endlessly and pointlessly posting about how we should not be so nasty towards those who don't wish us well? If I was newly installed in the BPS camp, I'd be delighted if a long established member of a patient forum worked hard to defend me, despite my attacks on the patient population, thereby wasting precious energy and time for all those involved..

ETA: The word "not".

 

I could be quite vitriolic before I got ME. ME can affect anyone, from the vitriolic to the placid and pious, and all types in between. Coming down with ME does not mean you have to change your personality to fit someone else's idea of what an ME sufferer should be. Some people are vitriolic, get over it.

A disc in a game of tiddlywinks perhaps.

Like I said, some people are vitriolic, get over it. Water off a duck's back. He's losing the argument, we are the scientists, let him bleat and snark on Twitter like Sharpe, White and Wessely before him. They usually end up with egg on their face before crawling back into their hole.

If the BPS brigade had any sense of irony they would stop labelling ME sufferers as "activists", I spend most of my day on the sofa, and I'm one of the lucky ones, most of us can barely move. They know we can't increase our activity, even with their magic, which is why they refuse the use of activity monitors on their studies. "Activists" is a lie. Calling themselves "scientists" whilst contorting themselves to avoid every feature of the scientific method they can is also a lie. There are many names they could be called, but as I'm not vitriolic all the time I simply can't be arsed going there.

Your surprise at other people's surprise surprises me. Are we not to raise our eyebrows now? Are you saying we deserved to find Kelland's article retweeted? Even those of us not on twitter who haven't engaged with this at all?

Of course they've been pressured by patients. They've also been pressured by BPS proponents, probably to a much larger extent and also behind the scenes. Patients won because they pointed out the complete lack of evidence and adherence to scientific principles of the BPS psychobabble. BPS advocates had their chance to pressure NICE too and they did, unfortunately for them NICE decided on the correct principles, mainly the (lack of) evidence. Is PG seriously claiming that patients managed to manipulate and pull strings better than well-connected knights of the realm and assorted titled and untitled hangers-on? Is that his only understanding of the word "pressure" - that we somehow managed to beat them at their own game? Hardly likely. We played a game which is totally alien to them - one based on reason, science and evidence. Sorry if that completely blindsided them.

Perhaps NICE should issue a statement that they haven't been pressured by Aliens, Astrologers, or Elvis, and then add "or the Wessely school" to the bottom of that list. I think I'd like that.

If that's the case then anger is quite called for, positive thinking is an offensive lie used to blame people for their own illnesses, and whichever version of it is currently in vogue is regularly used against us, which means we are denied access to healthcare and financial support and left to rot for decades. Congratulations on managing your anger, I'm fucking furious.

I absolutely can't follow the logic of this. Are you seriously suggesting a causal link between a few rude patients and promotions all round for this bunch? Isn't it more likely that their advancement is due to various other factors, such as an ability to bring in / save large amounts of money and effectively sell a load of old flannel to people it suits very well? If they are going to lie about the extent to which they face abuse from "activists" there's not much we can do about it except try to call them out. Going all meek as if there is any substance to their narrative just confirms it. They've worked out that playing the victim can get them a lot of sympathy and support from colleagues who take it at face value and don't scratch beneath the surface. I'd say call it out, demand the evidence, and don't be too distracted by it. All they can muster is a few tweets of the type which many of their colleagues are used to taking in their stride and ignoring.

Amen to that.

A causal link instead of vague hand-wringing?

That's very vague and tenuous.

That's Dawkins' "tit for tat" computer simulation - I watched whichever of his documentaries that was from on the BBC in 1986 and never forgot it, it was the first time I'd heard of game theory or that such things could be simulated on a computer.

I am seeing a parallel between PG and Noel Edmonds here:

https://inews.co.uk/culture/televis...e-prostate-this-morning-im-a-celebrity-225736

Someone was ill, tried quackery, got better, promoted quackery, blamed patients who didn't recover by adopting his batty beliefs.

Should Noel Edmonds not have been called out? Should twitter have remained silent? If a few cancer patients tweeted some rude things, should they have been branded "cancer activists" and villified and viewed as only having themselves to blame if Edmonds got promoted to the House of Lords? It's ridiculous not to call someone out who peddles such smug unpleasantness, and if they get called a few names along the way so what? And of course Edmonds played the victim card too.

If you can take such a chilled view of his blog, why don't you try taking the same chilled view of twitter, and assume that most others do too? It's just twitter. There are still an awful lot of people who aren't even on twitter or aware of what anyone tweets because they're doing something more useful. There are many ways of being offensive, and in my view the offence and damage caused by PG's blog is far greater than an occasional swear word or vitriolic comment on twitter.

Don't get RN's logic here. Surely if you're trying to solve a problem, you need to examine the cases where it hasn't worked so that you can improve your solution. If you write a computer program that solves a problem 10% of the time but makes the computer crash 90% of the time, you don't insist to your customers that it's their computers which are faulty (actually that's a bad analogy - I used to work with an apple programmer in the 1990s who did exactly that, oh well, can't be bothered thinking of a better example, I think you know where I'm going with this.)

I've personally, with one exception, learnt a lot more from ME sufferers who are still ill, than I have from those who have recovered. If I only listened to those who have recovered I would be eating exclusively from my Deliciously Ella cookbook whilst tapping my forehead and giving myself permission to love myself. Which isn't far removed from PG's recipe for success actually, so I certainly won't be listening to him if I can help it, although he does have an annoying habit of getting in our faces whether we asked him to or not.