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

Trish said:
:rofl::rofl::rofl:
If you can pay a personal trainer, I'm sure you can pay a cleaner.
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I don't feel taken seriously ;-)

On a serious note, isn't that an essential point for people who can't afford to pay a cleaner? And isn't that the majority? And isn't most housework, done properly, also kind of exercise?

It maybe isn't on the agenda of the severely and longer affected so much because they haven't been able to do most of those more exerting but necessary housework for quite a while and already have had to organize substantial support.

I think though, the essential point applies to the majority of people who experience some sort of post viral illness or prolonged recovery for the first time and who are on the so called mild-to-moderate spectrum: that they have to prioritize the exertion they do, and won't go for a jog if other more essential things need to be done and those things consume the energy that would be needed to do some recreational exercise.

IMO most people experiencing prolonged recovery will have sufficient physical activity to do when they get better and they will take up that activity gradually. BPS doctors probably won't count that as 'exercise' though. Also, most people who have post-viral illness that deveops into ME I think will try again and again whether they are able to resume (more) physical activity and will experience that they either just aren't able to or have bad relapses immediately afterwards or a phase of remission. And during one's first post-viral decade or even two decades I think most people hope that they will belong to the 5% that will fully recover at some point or at least get substantially better.

That's of course only my experience and my impression that I got from others.

So what PG and CG said about some of their most dominant thoughts and experiences regarding their illness to me seems not representative for the people I know who experienced either 'normal' prolonged recovery or post viral 'long covid'/ ME.

(Edited for clarity.)
 
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Esther12 said:
We're in a difficult situation as personal stories seem to influence people more than, for example, explaining problems with the way academic papers have presented their data. Personal stories are so often shaped by the individual's hunches and post-hoc rationalisations, and those that are promoted will tend to be those coming from the dominant culture. I just think that we need to encourage consistent caution with all personal stories, including our own.
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I think personal stories do have a place in professional journals. For example, there was the recently posted article by a GP who had 6 years seeking, and eventually getting, a diagnosis for a medical condition. She talked about what it was like to be labelled with a functional disorder, and the lack of curiosity from some of her colleagues. That kind of thing is valuable - because the practice of medicine is not just about biology. How someone is treated by the medical system (personally, rather than medically, I mean) can have a big impact on their lives.

So, I think when Garner was talking about how it felt to have a significant illness that was easily dismissed, it was legitimate to have that as an opinion piece in a medical journal. I agree that we need to 'encourage consistent caution with all personal stories', but, when they aren't extrapolating from an n=1 medical treatment experience, and instead focus on what it feels like to be on the patient side of the health care system, they can be important for medical professionals to hear.
 
Hutan said:
So, I think when Garner was talking about how it felt to have a significant illness that was easily dismissed, it was legitimate to have that as an opinion piece in a medical journal. I agree that we need to 'encourage consistent caution with all personal stories', but, when they aren't extrapolating from an n=1 medical treatment experience, and instead focus on what it feels like to be on the patient side of the health care system, they can be important for medical professionals to hear.
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How much was Garner extrapolating from an n=1 medical treatment experience though?

eg he presents this in terms of reporting his feelings and beliefs:

I know ME/CFS is associated with a variety of viruses and possibly other factors too, and recognise that the postviral syndromes have a wide spectrum of clinical manifestations. My experience may not be the same as others. I feel that I have looked down the barrel of the ME/CFS gun and disarmed it. I believe that we can unwittingly reinforce, as Pavlov has shown, the dysfunctional autonomic tracks in the brain set up by a virus long gone.
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Given the context, we can see the problems with this, but I feel like some of the patient responses to the blog are so driven by the context that they end up ignoring the provisos in a way that I expect will seem unfair to others (this was not prompted by Hutan's reply, but I'd been thinking of it previously).

edit: It does also look like an attempt to put a Recovery Norway narrative into a story about a patient's personal experience. But I think any lack of caution in the way this is responded to could be counter-productive.
 
MSEsperanza said:
I don't feel taken seriously ;-)

On a serious note, isn't that an essential point for people who can't afford to pay a cleaner? And isn't that the majority? And isn't most housework, done properly, also kind of exercise?
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Yes, sorry, your point was well made. Personal trainers are a luxury most can't afford, and more to the point, don't need. We have enough trouble trying to manage basic activities of living - it's all exercise.
 
The more I think of it, the more it strikes me that PG's reaction seems not unlike the "oh, thank God! I don't have a psychiatric condition after all! - it was all just some sort of problem with my brain chemistry"-type reactions I've encountered in the past, where you're so relieved that the thing you really feared has turned out not to be true that you do as much as possible to distance yourself from whatever it was. Am I making some sort of sense here?
 
from one of the comments under Davids latest TBE; bit more info on PG timeline
About Garners holidy, I believe he went to Grenada in November, as he was on the WHO Press Conference 30th October. A Norwegian paper shared the video, and his last words about Long Covid was: “It isn’t in the head.” https://www.dagbladet.no/nyheter/anna-20-har-vaert-coronasyk-i-200-dager/73013262

3 weeks later he was diving in Grenada, has posted photos on a public FB-page and written: “I needed the rest to be honest.”

Would also like to highlight that if he recovered from Long Covid in November, and suffered from denguefever a couple of months after he recovered (as mentioned in his BMJ-blog), he must have been on a pretty long vacation.
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so, get a personal trainer or maybe go on a nice holiday to the Caribbean.............
 
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Sly Saint said:
from one of the comments under Davids latest TBE; bit more info on PG timeline

so, get a personal trainer or maybe go on a nice holiday to the Caribbean.............
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There have been discussions on ME groups in the past (thinking of the old Experimental Yahoo group) on the "Locations effect". The Caribbean from memory was one of the places that some people reported feeling better in.

There are so many other things PG has done that he could attribute his recovery to (looks like he is easy to influence if the right buttons are pressed though (and this wasn't a button he liked))
 
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The Science Bit by Brian Hughes - Beware the COVID-sceptic doctors

We can all say something bizarre if we want to. Only some of us, however, are ever given a high-profile platform from which to publish it to the world. Self-belief in one’s own omnicompetence is a common affliction, especially so in the opinion pages of medical journals. We should all be wary of such knee-jerk expertise.
 
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Hutan said:
I think personal stories do have a place in professional journals. For example, there was the recently posted article by a GP who had 6 years seeking, and eventually getting, a diagnosis for a medical condition. She talked about what it was like to be labelled with a functional disorder, and the lack of curiosity from some of her colleagues. That kind of thing is valuable - because the practice of medicine is not just about biology. How someone is treated by the medical system (personally, rather than medically, I mean) can have a big impact on their lives.

So, I think when Garner was talking about how it felt to have a significant illness that was easily dismissed, it was legitimate to have that as an opinion piece in a medical journal. I agree that we need to 'encourage consistent caution with all personal stories', but, when they aren't extrapolating from an n=1 medical treatment experience, and instead focus on what it feels like to be on the patient side of the health care system, they can be important for medical professionals to hear.
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I think any such article should have a clear and unambiguous clarification statement up front, and the body of the article should abide to that clarification, and not pretend to be something it is not.

If PG had clearly stated his article to be essentially conjectural and n=1 anecdotal, and that he was not seeking to extrapolate generalisations from that, then it might have been much better. But in that case it likely would never have got written or published, given I suspect the probable objective was to generalise from conjectures about an n=1 anecdotal experience.
 
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Barry said:
I think any such article should have a clear and unambiguous clarification statement up front, and the body of the article should abide to that clarification, and not pretend to be something it is not.

If PG had clearly stated his article to be essentially conjectural and n=1 anecdotal, and that he was not seeking to extrapolate generalisations from that, then it might have been much better. But in that case it likely would never have got written or published, given I suspect the probable objective was to generalise from conjectures about an n=1 anecdotal experience.
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If we hadn't seen a campaign to try to use n=1 anecdotal evidence to replace PACE's collapsed recovery claims, would so many people be interpreting this blog in the way that they are? Would you expect every blog based on a personal story on the BMJ to start with the same clarification?

I think that there are real problems with the blog, but I think that some of the responses critical of it are more of a problem. Especially on twitter, there has been some needlessly unpleasant stuff. It's just not a good look to respond to a personal story with some of the sort of personalised criticism I've seen.

We don't know what's going on with Garner and while I think that some of the suspicions people have about the background and intent to his blog may be valid, publicly jumping to those conclusions just seems unfair.
 
AR68 said:
Are there some grounds for a complaint to OFCOM?
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You can only complain to Ofcom if you have already complained to the BBC and received a response that you are not satisfied with.

I’ve submitted the following complaint to the BBC via its website. There is a 2000 character limit so I had to edit what I originally wrote. Details of the programme etc. are all submitted in separate fields in the form. Past experience suggests they will delay the maximum amount of time before rejecting the complaint for spurious reasons. I will then escalate it to Ofcom, which will probably do the same.

My complaint:
Clare Gerada and Paul Garner were interviewed about long covid. Both promoted exercise as beneficial. Dr Gerada stated: “There is nothing that isn’t made better through exercise. OK. Nothing. No matter what age, what condition, exercise will always improve it, but in moderation.”

1) This is factually wrong. There are numerous conditions that are not made better by exercise.

2) It is deeply offensive to the millions of people with conditions that are not made better by exercise.

3) It is also harmful to people who have illnesses such as ME/CFS which are made worse by exertion. The CDC rejected graded exercise therapy (GET) as a treatment for ME/CFS in 2017. The new draft NICE guideline on ME/CFS specifically recommends against GET, not only because of the evidence that it is ineffective but also because of the evidence that it is harmful.

4) Some people with long covid meet the diagnostic criteria for ME/CFS. Recommending graded exercise for those people is potentially harmful.

Dr Gerada and Prof Garner also promoted the benefits of positive thinking as being helpful in overcoming long covid.

In its draft guideline NICE also warns that CBT, which promotes positive thinking, should not be given as a treatment for ME/CFS. There is no reliable evidence that any type of positive thinking has any effect on outcomes in long covid or ME/CFS.

Dr Gerada and Prof Garner were not challenged about their claims as they should have been. Instead they were presented as “experts” who had given “good advice”.

I request that the BBC corrects the false information that was broadcast and apologises for the offence and harm that it caused.

NB I can provide references to support my statements above but unfortunately there isn’t space to include them within the character limit.
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My complaints comes under section 2 (harm and offence) and section 5 (due impartiality and due accuracy) of the Ofcom Broadcasting Code: https://www.ofcom.org.uk/tv-radio-and-on-demand/broadcast-codes/broadcast-code

Complaints about offence may be more likely to be upheld if more people complain.

See bottom of this page for how to make a complaint: https://www.bbc.co.uk/contact/complaints
 
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