It depends very much how the anecdote is told. I'm sure I've told this anecdote somewhere here before, but I'll tell it again, since it seems apt here.
I was having lunch with friends some years ago. We all knew each other pretty well, including that one of us had recently lost her husband to cancer. Another person there, who was aware of this, told us about a friend of theirs who had recovered from cancer and went on to tell us how positive that person had been and how that helped them survive and do so well. Just imagine how the newly widowed person felt. It was being clearly implied that her husband hadn't been positive enough. I remember I had read research that showed that positive thinking has no impact on cancer survival, and said as much. I think we all felt really bad about it, including the person who had told the recovery story.
That is the sort of impact I am talking about. It is not a problem for people to tell recovery stories. What is a huge problem is people attributing their recovery from physical illnesses to positive thinking. Even if they don't mean it to, it implies a claim to a power greater than others have. And it's just plain factually wrong. For a doctor to do it without apparently realising the hurt and harm it causes is appalling.
I agree, it can be interesting to listen to the stories of those who have recovered, and it can be heartening to know that recovery is possible. But given that there is no scientific evidence supporting any attribution for the cause of the recovery, and a plethora of snake oil sellers ready to entrap us, we really need to be careful who we listen to.
I agree with a lot of that (though personally I'm not that interested in any recovery stories), but I do think that it's even more complicated around ME/CFS due to the fact that we don't know that any of the criteria for ME/CFS are identifying patients who all share the same cause of ill health.
Even with cancer, where we have a better understanding and wider awareness of how poor a lot of the research claiming to show a 'positive' attitude improved mortality rates is, it's still possible to see how an individual could have fallen into a 'negative attitude' on diagnosis and thus failed to engage with treatments properly, then changed to a 'positive' attitude and so now attribute their survival to a change in attitude. With personal stories it can be very difficult to know how to judge them, and that's one reason why I tend to just leave them alone.
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.
We don't know who has what values, and how much power these different groups have over shaping how we are treated. Ideally, we'd give up on as few people as possible, and avoid anything likely to be counter-productive with those who might hold some key deciding vote.
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)
These?
"We spent too much time with people we agreed with and not enough with people we didn't agree with. We believed the evidence would speak for itself, and it didn't."
Jim Al-Khalili: And, and looking back you know 25 years ago, do you think now or wish that you’d done anything differently?
Simon Wessely:
I think the youthful me possibly could have handled it a bit more sensibly. I think that’s probably true. And I certainly underestimated the depth of hostility that was out there to psychiatry. And by the time I’d realized that, some of the things had been said.
But equally I don’t think it would have made much difference. There are some people out there who continue over the years to make things up. To distort and tell lies about you and that would have happened anyway to be honest Jim in this field. It happened to others as well.
I view his comments as more being about positioning himself effectively than being chastened.
He criticised sick people who tried really hard, sometimes to their own detriment, to help him.
What quote from his blog do you think has the strongest criticism of other patients?
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.
Accepted by who? To me, it seems like there's ongoing dispute and uncertainty there.
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.
It seems that Garner thinks that positive thinking and exercise helped him, and that he doesn't want other people like him to miss out as a result of any changes.
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.
I don't think that there's anything public about him being directly involved in Cochrane's CFS work. He is on the Cochrane governing board. But he was critical of Cochrane's CFS work in one of his earlier blogs.
I feel like this discussion has been a bit vague. Everyone can agree there are lines that shouldn't be crossed while disagreeing on where that line is exactly. It is hard to know what to think without examples of tweets/responses to CG and PG that some view as unacceptably snarky or obnoxious or aggressive or toxic. If I saw an example, I could say, yeah, I think that's not warranted, or I think it is.
It's another question whether it's worth it to respond at all and draw more attention to these personal illness recovery narratives. But with this discussion it seems like people are debating the issue in the abstract rather than specifics.
It is complicated by my not feeling naturally comfortable posting about an individual patient's tweets, when they could be going through a really difficult time.
One this morning that highlights some of the difficulties here:
Triggered by the Paul Garner- Gate
@PaulGarnerWoof I engaged on Twitter a couple of days. Still in bed, still very severe, still can’t talk, brain still not functioning, pain excruciating, now my ability to text with my loved one’s, are on pause. PG&Co are the worst kind of evil
So here we have someone who is tweeting Garner that he is the worst kind of evil. I don't think that's a reasonable response to his blog. But at the same time, this is someone who is talking about suffering from a worsening of their cognitive abilities and pain following on from the upset they felt about Garner's blog. What good could any of this have done?
I don't think this blog warranted more than a couple of polite responses at the BMJ pointing out the limitations of personal stories for understanding medical problems, and maybe gently raising concern about some of the tone.
