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

It would be quite good if Hilda made a comment in slightly more robust terms. I don't tweet but I find the outpourings of these people pretty offensive to me personally (and to Peter Barry and co) quite apart from being so unprofessional and revealing such a complete lack of understanding of the issues involved. Surely by now she must have made up her mind that the patients know what they are talking about and Garner, Flottorp and Guyatt do not. I thought these Cochrane people were themselves supposed to be 'activists' working in the interest of patients. There is nothing difficult about this. As Michiel has also pointed out, if trials use methods that would give positive results for homeopathy, drugs that don't work or neurolinguistic quackery (and have done so) then they aren't any use.

 

Part of the problem here is that members of the NICE committee are bound to silence so cannot defend themselves. But I am not sure they should be expected to. They have justified their decision perfectly well.

 

I don't think it would be appropriate for NICE to be reactive in this way - they don't need to be, nor should they give any impression they feel the need to be.

 

I see it different. Someone claiming that NICE changed the guidelines in response to pressure (and not evidence) is making an attack on both NICE and patients.

 

https://twitter.com/user/status/1366794051622735872

 

Or as I read it
I have no idea what I'm talking about but my friend said this. In an attempt to appear current and draw attention to.myself I shall parrot wot he said.

It surprises me that someone educated to the level they have become a professor is quite happy to display such a shocking lack of critical thinking and how willing they are to blindly accept "facts" presented by other people.

 

Funny, that's exactly how I read it.

 

While Garner's recent posts have seemed deliberately provocative and potentially partly designed to elicit a sharp response, I'm afraid I don't see the "vitriol" or "abuse", "harassment", etc in the replies. There are one or two that seem off base, but, really - genuine question - is this considered "vitriol"?? A lot of people are relating their experiences.

 

It no longer surprises me – but it's still hilarious to see quite how far below sea level the hills are on which they've chosen to die.

 

Yes, I don't doubt that you think this way. I personally think that people like Hilda Bastian responding in the way that she has is something good, and I think that patients standing up and defending themselves is a good thing as well. Funnily enough I'm not concerned about Garner's feelings as he certainly doesn't seem concerned about mine.

 

I agree. I have seen nothing that should upset a professional in these patients' responses. I actually think that patients should pile it on because otherwise they will just be trodden underfoot as before. Vigorous complaints led to the shift in NICE policy. The sense of entitlement on the part of those lobbying against NICE is not on.

 

They're grossly irresponsible tweets and very unprofessional.

 

I think that a lot of the criticism of his initial blog was caught up in how it made some people feel, stemming from the history of problems they have endured, rather than dealing with exactly what he said. Also, I think that the actual problems with his blog were complicated and would take a lot of effort to explain in a way that people not already steeped in the history (and sympathetic to our concerns) were likely to understand. Social media is not well suited to that, so instead we just had patients behaving in a way that was unlikely to do anything but make us look bad to those who have power over us.

There are also rare problems like this patient, who seems to take pride in getting media attention for swearing at academics on twitter. When there are patients like that around it really changes the context.

https://twitter.com/user/status/1360183040346120194

 

And those in power don't care about us anyway, so why on earth should we be worried about what they think of us.

No, it really doesn't change anything.

 

I disagree, @Esther12. I think that tweet is fine.

The way I look at this stems from arriving at the 2014 CMRC meeting in Bristol and listening to Peter White give a 15 minute tirade on abusive patients attacking science. I was blown away by the sheer nastiness of the whole thing. The sneering and the disingenuous presentation of rotten data was something I had never seen before. I had seen something a bit like only once before at a rheumatology conference where a medic from the Hammersmith Hospital joked about patients dying. On that occasion uneasiness in the audience was palpable. In Bristol delegates either lapped up White's story or knew how to keep their cool because this was nothing new to them.

PWME have a right to make comments like qua sar. I get this stuff too - being told by Michael Sharpe that I am being disloyal to colleagues - stuff that mate. I am loyal to patients, not colleagues who fiddle their data.

 

Surely if the professionals had taken the correct approach to individual patients who engaged in verbal abuse, by responding in a manner that de-escalates and diffuses potential conflict (as their medical training should have taught them to do), then patients such as the one in this twitter thread would have had the wind taken out of their sails and would have been left with nothing 'to delight in'.

 

What is the patient justifiably angry about? Garner attributing his recovery to positive thinking? There are always going to be people recovering who attribute their recovery to all sorts of things. It's worth pointing out the limited value of single stories, but if someone feels the need to start swearing and being nasty to them on social media then that's not close to justified. People say worse on twitter every day, and I'm not arguing that ME patients are some uniquely unpleasant group, but we are in a position of real weakness and facing a skilled and powerful attempt to smear all those raising concerns about work like PACE - having a patient behave like this is only going to make things worse. Sadly, even legitimate and reasonable ways of patients expressing their hurt will often make things worse. We keep seeing that professional people often do not behave as they should, particularly when the interests of they or their friends are threatened.

In this case, things are really different with Garner than someone like White. Garner was being criticised for a blog about his personal experiences (I know that omits some important aspects but I think that description is how most of his colleagues will see it), not for an academic paper that spun results or anything like that. I think that changes the sorts of responses that are okay.

I hadn't been aware of this curse of the maths teachers! I'd never thought of teachers having to endure people endlessly reliving their childhood traumas in social occasions.

I'm certainly not saying that the PACE lot have behaved well, but it's in their interest to take advantage of any patients behaving badly or anything that can be used to make us seem unreasonable to their colleagues. No-one can look at the state of things around ME/CFS and say that it looks as if professionals can be trusted to be have well.

If we didn't have anything to worry about here, and people like White, Wessely, Crawley etc were undermining their own careers with their anti-patient tirades, then why is Wessely on the edge of the House of Lords? Why was Crawley promoted and now doing a new study with Stephenson?

I suppose this patient has a 'right' to send stupid and unpleasant messages to academics on social media but doing so is only going to strengthen the positions of people like Wessely, Crawley, etc.

 

But surely an exasperated ME patient doesn't have any power at all, and that's why they're exasperated? If they had even a fraction of this kind of influence, they'd hardly waste their time insulting Paul Garner.

If you could get into the House of Lords by bravely ignoring a few Twitter trolls, every female (or black, or Jewish) MP, journalist, footballer, etc, ought to be ordering a new suit and booking a hairdressing appointment ASAP, because they deal with 100 times worse than this, every hour of every day.