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

What is need is the acceptance, as with e.g. depression , that different approaches suit different people. Talking for one, psych pills for another, both for many, aspirin.


But because such an acceptance is seen as part and parcel of unhelpful thinking by the fundies of various processes, they cannot accept diversity.
There are practitioners who know the limits of one or other therapy. Perhaps over time Garner will be able to engage with those who have failed on his path or succeeded on others.

 

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.

 

Once you start with a definition of ME which excludes actual biophysical aetiology (ongoing) , everything we say about this or that not addressing physical illness is irrelevant.
They are in camp Sharpe - illness without disease. Physical illness as symptoms but not of physical cause.
We can't argue with that by quoting physical aetiology or claiming that this process or that will not touch physical illness, because in their terms we are not physically ill, or if we are we do not have ME, as they define it, even of they take the money upfront with no traige beyond our willingness to believe and practice.
No other definition is tolerated as it misleads patients. It's the same for Eaton and his "stop looking for help except from me" RT, fro LP et al. and of course for "accept CBT/GET or else you have a false illness belief" NHS approach of recent vintage.

I have no problem is sb is helped by anything, make no judgement, don't know. Same for Perrin's version of ME, incidentally. Good luck to 'em all. But applied to all with a diagnosis and ME consistent symptoms - bag of balony -and may their attempts to monolpolise and inevitably imply that dissenters are not up for getting well be confounded.

 

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.

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.

These?

I view his comments as more being about positioning himself effectively than being chastened.

What quote from his blog do you think has the strongest criticism of other patients?

Accepted by who? To me, it seems like there's ongoing dispute and uncertainty there.

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.

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.

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:

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.

 

I certainly do. I had no difficulty judging people's values when at the NICE committee taking questions - whether Adam, Sally, Peter Barry, Jo Daniels or Chris Burton. Values exude and fluoresce in this area!

The lesson I have drawn from my formal engagement so far is that from a political point of view going hard is what works. I think David has shown that very clearly. OK papers remain un-withdrawn, but the message is out there and everyone knows it. I think I seriously annoyed some people on the NICE committee, but it did not stop the draft guidelines getting things in perspective.

Wessely: I think the youthful me possibly could have handled it a bit more sensibly.

That was the one I think. I am not suggesting that he is chastened, just that he realised that his approach could have been predicted to be counterproductive.

Yes, and in the context of the tweet I think that is entirely fair. It is an expression of frustration and rage - which is the whole point of twitter as far as I can see. And I actually agree. This is the worst kind of evil - the sort that takes advantage of privilege and opportunity and uses pseudoscience that makes a mockery of the person's academic position to sound smart while trampling on other people's feelings.

I would put it differently maybe but this really really bad behaviour as I said in my comment on the site.
Naive beliefs in medicine are not forgivable. The surgeon who refuses to operate because of religious views is committing a crime against the patient.

I am surprised. Garner is showing that he has taken on board and is ready to spew out drivel that is causing harm to hundreds of thousands of people. This is really really bad and if a patient puts it a bit more starkly I have no problem with that.

 

Ok, I can agree a tweet like that is unhelpful in a debate. Luckily, most are not like that.

 

I feel that there is a problem not so much with what Garner said, though that is bad enough, as with why he said it in the way which he did. It must be presumed that he has reasonable communication skills. He ca n hardly have failed to anticipate the reaction. It would have been simple to write about his experiences and "recovery" and leave a positive message without including all the damaging nonsense. He chose not to.

What we got reads like a first draft which should have gone no further.

He does at one point say he is "back on track". Track to what? Recovery? It seems confused.

 

Why I think this is so important is that Garner is putting across the real Cochrane values - a sort of evangelical hypocrisy. I have had it from Chalmers and from others indirectly. In a way I think Cochrane is at the root of all the problems for PWME. If Cochrane had been what it purported to be the BPS approach would never have got anywhere. Garner says he was in at the start of Cochrane. The mindset eventually becomes apparent. In essence it is anti-intellectualism - low tech and touchy feely rather than high tech and evidence based. But of course it appears to be the opposite.

 

Mm. I suspect it had not entered his head. He was wanting to pour out his new found faith in what he wanted to believe in.

 

I noticed that as well. It's an LP thing. Someone posted a pamphlet about it, didn't save it. I assume it's track to recovery, yeah. His entire article is basically all the LP buzzwords arranged in something similar to a fake review by a sales executive.

 

Absolutely agree. That is why I bang on, somewhat to some people's dismay, about the public needing to call the agenda. I was responding to the idea of being tactical with 'those with power'. But yes, there is a lot more to this than one can capture faithfully in a lightning forum post. (Oops!)

 

I wouldn't consider this unreasonable and actually still quite polite. Does it add to the debate? Not much but it does show a person stating what they think of his blog....agree or not. They are entitled to their opinion. I don't think its damaging in anyway the the ME community. People can say much much worse.

I remember when the doctorsaredickheads hashtag trended on twitter. People told their experiences and some said very nasty opinions on how they felt about it. To some people, calling your doctor a dickhead can be harsh. To some not. A few doctors responses were to start the hashtag patientsaredickheads completely missing the point. Some doctors did come on and realize that maybe with this kind of response from the ENTIRE chronic illness community that maybe they weren't doing as good as job as they could. Some even apologized. Some said it needs to change. The doctors that lashed out calling their patients dickheads back frankly just ended up looking foolish. I think the whole thing was good because it did highlight a problem and some doctors took notice.

 

Don't forget that is was the "banality of evil" tweet that got Mike Godwin interested:
https://twitter.com/user/status/1005015724082057216

https://twitter.com/user/status/1006557665542262784

The series of tweets Mike Godwin posted after doing his research have got very jumbled up and are now hard to follow on Twitter, but this is the main one:
https://twitter.com/user/status/1007508136331300865


For any newcomers, here's Dave's blog about it: https://www.virology.ws/2018/06/18/trial-by-error-sir-simon-scores-an-own-goal/

 

It's not primarily about feelings though, is it?

It's about survival, if you look at it a bit deeper. PwME are fighting for their lives.

It's about a person of power exacerbating stigma and misinformation, which contributes to increased discrimination and ableism, which in turn makes it even more difficult for us both as individuals and as a group to access safe, appropriate, high-quality medical care and get the medical support we need; sometimes in the form of physicians' words on documents we desperately need in order to apply for social support and other things related to our basic human needs like sick leave/sick pay/ill-health retirement, help with grocery shopping and laundry and taking out the rubbish, safe transports to hospital visits, disability aids like wheelchairs etc to help us live a little more independently without having to constantly push ourselves into PEM just to get ourselves fed and clean each day, etc. Or just the basic credibility that is needed in order for friends and family to accept that we need their support.

It's about patient safety, denied or indefinitely delayed medical care, and frequent iatrogenic harm which often means permanent deterioration. It's about medical gaslighting and bullying. It's getting harassed because the social service manager doesn't believe you're too ill to speak on the phone. It's about very severely ill pwME getting sectioned or left to die of neglect.

Well, I guess sometimes it's about feelings too. PTSD caused by all of the above. Grief, sadness and frustration when we lose yet another pwME friend to suicide.

It's not "just" Garner's or somebody else's opinion scrolling past on a screen for a moment. It's not happening in a vacuum. It's all interconnected. Systemic.

Words have power. Sadly, too often words are given a disproportionate amount of power and influence depending on who is expressing them and when, where.

Words really do matter.

ETA: None of this was directed towards Jonathan Edwards. Sorry if that wasn't clear!

 

Good point.

Just ... trampling on other people.

 

There are reasons why the patient community should challenge the promotion of psychologic interventions, and graded exercise, which have no evidence base.

I work at a junior level in a (non-health) public policy area [UK devolved administration].

You take a junior health policy official being asked about CBT, GET --- whatever your national equivalents. If they Google and find out that it's controversial, the "evidence base" has been challenged; deeply resented by the patient community --- concerns shared by groups represented by groups representing related illnesses. Then the background note to the Ministers adviser will note the "views" of patients --- possibly but not always shared by the National Organisations [a warning that the organisations may not represent the views of patients]. So yes, there is a reason to take the route @Jonathan Edwards has taken --- your elected representatives get told that this crap comes with a health warning (it could seriously damage their brand!).

Also, £5 million for PACE would have funded a GWAS study, proteomics study (like Hanson's recent one) an actimetry study ---- and the line from the Minister will be we are aware --- we have funded research aimed at understanding ---- developing effective treatments ----.