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.
Rather than sophistry, I think it's helped show how what you've said there is a much fairer criticism than complaining that Garner said that we should not listen to patients who are still ill. He does imply that to aid recovery it is better to listen to patients who have recovered and not those who are still ill. There are problems with that considering i) we do not have good evidence indicating that particular approaches aid/harm recovery, and actually the evidence we have indicates that the approaches tested have little impact on recovery rate, ii) it's quite likely that within ME/CFS people may have different problems that have different rates of natural recovery, iii) those who have recovered can develop poorly supported theories to explain their recovery, just as those who are still ill can fall for poorly supported theories to explain their ill health, iv) it risks encouraging the assumption that those who are still ill with ME/CFS are lacking an insight into and understanding of their ill health, even though this view is not supported by and good evidence, v) those who are still ill can certainly develop and informed and reasonable understanding of the available evidence; and so on. At the same time, it's an idea that has some intuitive sense to people. There's a reason why attractive people can making money hawking over-priced beauty products on instagram. And given the lack on knowledge around ME/CFS we cannot know that some of those who recovered from ME/CFS did so as a result of developing a useful form of understanding of their own ill health.
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.
I'm criticising some of the complaints about Garner that I think are unreasonable. I've also made criticisms of Garner. I've contributed a clear minority of the text in this discussion, and I'd started by arguing that it would be silly to put effort into drawing attention to Garner's personal story, which should be no more important than the stories of anyone else. I think it's been a counter-productive waste of time and energy, but if others disagree then I'm interested to find out why.
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.
Even given how little we know about ME/CFS, are you saying you think it's impossible that anyone could fall within one of the more respectable ME/CFS criteria and then recover with assistance from positive thinking? I'm definitely not certain of that. I also think that there are lots of ways positive thinking can be harmful, and certainly the history of exaggerated and misleading claims about the power of positive thinking to aid recovery from a number of illnesses is good reason for scepticism. But I don't feel that I have anything like the knowledge needed to say that a claim of recovering with assistance from positive thinking must be false. It could be that Garner is largely right in his understanding of his ill health.
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?
No. Or at least, not much of one beyond it being useful to them for dismissing their critics and gaining support from colleagues.
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?
Why would you think I was saying you deserved to have Garner tweet Kelland's piece? I've said nothing like that.
It does seem that I'm viewing some of the controversy around Garner differently to many of the others here, and I'm surprised to find I have such a different perspective. To me, it looked like some of the response to Garner was almost designed to help support Kelland's work. That this was being sent to someone well connected in EBM at a time when we knew other well connected researchers would be trying to encourage the sort of narrative we've seen from Kelland to undermine progress for us, and support their own positions, was not cheering. To me it seemed an obvious move for them to be sharing links amongst their colleagues, on private lists, etc to Kelland's work, Garner's blog and some of the responses to Garner. It seems like a tactic that would help encourage support from their colleagues and that has helped them previously. Some people here then seemed genuinely shocked to see Garner share Kelland's article, and that again highlighted to me how different our perspectives were.
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.
Just because I want to understand peoples' views here and explain my own doesn't mean that I think some stupid tweets are the most important thing going on right now. In terms of how it affects our lives, and our ability to make progress, the offence of powerful people is more important than the offence of patients though. I'm probably not someone who naturally takes offence much in my personal life. I tend to just be amused when people are rude to me, unless they have real power over me. It could be I just don't get much of the emotional response some others are having here.
It has been argued that we should take Paul Garner's most recent BMJ article at face value as the personal story of a sick man who got better and made personal remarks about is interpretation of the most helpful steps he took on the path to that recovery.
It has been argued that this is not the full picture. That Garner was invited by the BMJ to tell his long Covid story precisely because he is a very senior infectious diseases specialist who will be able to put his experiences in context for his colleagues to learn from.
I think many people here have no problem with private individuals blogging on personal blogs about their illness experiences. But that is not what we have here. We have a powerfully influential doctor opining on what is helpful and unhelpful for people with long Covid. Not just for himself, but as a story intended to be informative and useful to his colleagues. So how he interprets the reasons for his recovery matters.
It has been argued that when the article was written, it was when he was still too close to a difficult life experience to be able to be objective about it, and to understand what impact his words may have. That may have been true then. He was clearly still in thrall to the personally flattering story he had been spun by the LP people that it was by his own superior powers he had 'dodged the bullet' of serious disease. Brainwashing is a powerful thing when it is done in a way that flatters the ego.
But,
that article was published on 25th January. And Garner himself was already able to go scuba diving in Granada back in November. He has been recovered for months. He has had plenty of time to reflect on his experiences and the impact on others less fortunate than him of his reframing of long Covid and ME/CFS as something he overcame with the power of his mind.
He is now acting as an expert doctor on the subject. He has gone on TV to tell people what he thinks made him recover. I have not followed any of his tweets, but I gather from the few posted here that he is now in full LP/BPS mode there. And he has joined as a co-author on the Jason Busse article criticising the NICE ME/CFS committee's analysis of the evidence.
Garner has made a cholce, publicly, to come down on the side of the BPS crowd attacking the NICE committee, and on the side of the LP/BPS framing of ME/CFS and long Covid as treatable with positive thinking and exercise.
He is no longer an innocent patient caught up in an unpleasant experience and telling his personal story. He is an advocate for antiscience and against ME/CFS patients.
I see no reason for any ME/CFS patient to go on defending him. I would go so far as to say defending him as a supposedly innocent patient just telling his story is offensive to me and to other people with ME/CFS and long Covid.
I've been explaining why I think that some of the responses to his initial blog were unreasonable. Since then there have been more reasons to criticise his actions, but I also think that they now need to be understood in the context of his initial blog receiving some significant unreasonable criticism. Generally, I think that putting time and effort into criticising problems with what Garner writes as an individual is an unusually poor idea for advocacy, and unusually likely to backfire.
I don't want to offend anyone here, I just want to explain why I disagree with some of the things that they say.
I do think
@Esther12 is being a little over cautious, but understandably so. I vacillate a fair bit on how well things are going. It is easy to forget how far we have come, especially in the last 5 years, but also easy to forget how far we have to go and how fragile this success is.
With so much riding on the forthcoming final versions of NICE guidelines and the Cochrane review, I am certainly a little nervous about it right now. I think we are going to be okay, but until it happens they are huge unknowns.
Speaking as an ageing long-termer, I don't have it left in me to do that fight all over again. That is a scary and depressing thought. Doubt I am alone in that.
The issue for me is not people expressing anger, that will and should happen. The issue is how they do it, and how the rest of the world sees it (or at least how the people with the power to make changes to our benefit see it).
I am also not entirely sure that the more aggressive nasty online commentators are all legit patients. Some of them could well be BPS sock puppets doing a Sharpe (i.e. provoking and encouraging emotive hostile reactions from legit patients to use as 'evidence' about irrational abusive patients).
A well-aimed fact-based retort is certainly a thing of beauty.
I think that I probably do see the progress we've made as more fragile than some others. Also the forms of progress we've made, and those we have not, often seem to indicate that the way some of the systems that have power over our lives work is even more biased against us than I'd previously realised. Despite that progress we've made I think that I feel less optimistic for the future now than I did four years ago.
I certainly feel that another major setback would be something of a strain, and that it would be best to avoid doing things likely to backfire on us.
"The issue for me is not people expressing anger, that will and should happen. The issue is how they do it, and how the rest of the world sees it (or at least how the people with the power to make changes to our benefit see it)."
I really agree. A lot also depends on context.
I see a massive difference between expressing anger in these ways:
Expressing anger about the accurately described poor professional behaviour of a researcher.
Expressing anger about the inaccurately described poor personal behaviour of a researcher.
The main concern I have with the response to Garner is that some people were expressing anger about him having said things that were not exactly what he said, increasing the risk that others would believe that was what he said and the problems would increase. Regardless of ones views on tone, civility, etc, that's not good.
This lays out the problem exactly. What message will his readers take from the article of they know nothing of the background. They will conclude that people with ME are still sick because they are not willing to do what they need to get better. This is the idea that has been spread about us and is why we CBT and GET are still the only treatments being offered to us despite nearly forty years of it leaving thousands devastatingly ill.
They should realise that this is just one persons story to be understood in the context of previous information indicating that most people suffering from post-viral fatigue go on to naturally recover. But it does seem that people can be unduly swayed by a personal story. If instead they take the message you're concerned about then I suspect that many of the responses to Garner will do more to entrench that view than challenge it.
I respect your opinion but I, unsurprisingly, disagree. Posts, at great length, explain why we should be accommodating towards Garner, while seeking to highlight alleged poor behaviour of a tiny minority who, as you suggest, might not even be patients. That looks very much like defending to me, lifting blame from one party and seeking to put it on another.
I don't think that we should be accommodating towards Garner. I do think that responding to Garner's personal story blog was unlikely to be a useful form of advocacy and I am concerned that some people were making criticisms of what they felt was said, rather than what was actually said. I think that it makes sense to try to be understanding of others, and that there's particular reason to do so if we know they've had a difficult year, but that's not remotely the same as feeling we should work to fit in with what they want.
It is striking how mild much of the criticism is - you really have to go through so many fairly measured replies to find anything that might be classed as particularly aggressive toward individuals - in the case of the one cited earlier, the offending tweet talked about "the c word". It did not specify which word.
Still fairly polite!
Perhaps pointless and not constructive as a commentary, but if only all abuse looked like this.
That was a tweet sent in defence of sending abusive messages after the tweeter had been swearing at Garner and another patient had asked him not to be abusive. I agree that something like that is very rare, but I think that there is more of an issue of people expressing anger directly to Garner in poorly explained ways. There were also a couple of tweeters repeatedly sending messages implying he'd been paid off - silly things like that from a tiny number of patients do feed in to a view of ME patients that is harmful to us, and people like that being around is one reason why I think it was a bad idea to draw attention to something like Garner's personal story blog.
If there are just two or three people sending lots of messages like that, that alone means that any incautious behaviour from others is more likely to cause problems and be interpreted as part of an abusive pile on.
