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

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.)

 

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:

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.

 

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?

 

Yes, un peu Marie Antoinette:

"There is simply nothing that isn't made better by having one's own personal trainer"

Honestly, without my personal trainer, I don't know HOW I would have gotten by...

 

If this is one of her axioms then it's no wonder she struggles to comprehend ME/CFS.

 

That seems a tenable argument.

Obviously if exercise does make anything better it "isn't".

 

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.............

 

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))

 

How the other half live! That must be essential travel.

 

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.

 

Excellent article - well done @Brian Hughes

 

Brilliant article @Brian Hughes. Love the spot-on clarification of pseudoscience.

Just one typo you might want to fix re Pavlov - I think you meant to say "drooling" rather than "drolling" .

 

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.

 

Are there some grounds for a complaint to OFCOM?

 

Probably not. It seems entirely in line with the strategy of the main BBC news programmes in providing lengthy, irrelevant anecdote, of no possible interest to anyone.

 

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.

 

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:

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