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

Ugh

 

I can't watch it because I'm not in the UK. Good. I wanted to take one for the team and watch it so that others don't have to, but secretly I'm glad I can't.

For those who watched it, how was it?

Did they only talk about anecdotes?

Did they mention the changes to the NICE guidelines?

Did they acknowledge that anecdotes can be unreliable?

 

I'm fairly certain that at the time Claire Gerada was in the press stating that she had got over covid with a few days bed rest and chicken soup - crowing about it in fact.

If that was the length of time she was laid up then 'deconditioning' is unlikely to be the 'reason' why going for a run caused 'issues' that required a personal trainer to allow her to exercise.

The assertion that such a short period of bed rest could cause such a degree of deconditioning, and many months of training to overcome, and not anything post viral, from a GP, seems bizarre to me.

Unless of course it's more 'marketing'.

 

I've watched it but I don't have the energy to summarise it for you guys, sorry it's only a couple of minutes long though.

 

Not as bad as PG's recent article.
Yes.
No.
No.

 

They didn't really say anything about me/cfs. Garner mentioned taking advice from somebody who had recovered from me/cfs, but that was the only mention and it wasn't implied that he had me/cfs, thankfully.

 

I don't think she mentioned deconditioning on BBC Breakfast? It seems like she was more talking about covid having set her back physically in some way and needing to slowly build up exercise rather than jumping straight back in to her usual activities. (And the gradual build up worked for her - presumably because hers was self-limiting post viral fatigue.)

 

https://twitter.com/user/status/1354524843333529615


“Through the advice and support of our wonderful ME community, one man has successfully avoided long term disability. If he dodged the bullet of ME/CFS, it's because we pushed him out of the way. We're kind of amazing like that. I love you all. #meawarenesshour #MECFS #LongCovid”

Edited to add quote marks & put quote in italics.

 

Further comments:

 

No amount of pacing will prevent anyone from developing ME. It might prevent some of us from becoming worse over time, but the pathophysiology is ALREADY in the cards. I agree with Dr. Edwards, it's better to ignore PG and let him fade away. He's overzealous and needs to get off this 'celebrity road trip'.

 

It might take me some time but I will try do a transcript of the relevant segment of the BBC Breakfast News piece. Will post back here later on.

 

Given the dynamics of the internet age giving too much voice can be a problem, but leaving loose ends unaddressed was never possible. Once the necessary issues are marked off, sure.

Search engine indexing algorithms have made sure, and will likely continue to make sure, that his post will maintain high profile for some time. A narrative point of reference that needed solid reply, particularly without appearance of patient whining (exactly the trap).

 

My notes on some of this:
Clare Gerada got Covid in early March, her worst symptom was severe muscle pain.
As she began to feel better she started running again, which was the worst thing she could possibly have done.
Then got herself a personal tariner and took 3-4 months of gradually incresing her "muscle tolerance" with this guy.

Is now fully healthy, back to running 5/10k

Paul Garner
First 2 months extremely unwell with waves of illness
Then 4 months of complete exhaustion/avoiding overdoing things
Then lapsed into period of being frightened to do anything

Gradually recovered, pushing thoughts aside.

Interviewer than commented that they had both been very fit pre Covid and are both Drs

PG You think you are an expert and then when it happens to you, you are just a patient.
need for gentle exercise and positive thinking to move forward.

CG: There is nothing that isn't made better by exercise....in moderation, gradual recovery, don't push yourself too much!

Try and change thoughts of what you can do/not what you can't. Mental approach is SO important.


Then there was a brief piece about a singing course, by Zoom that is helping people (seemed to be those who'd been hospitalised).
Pilot now being rolled out to a 1000 more.

Looked more fun and less harmful than GET or LP.

 

PG (BTW) looked pretty crap in the Zoom call. He had the exhausted, can't move my face properly look.

 

I wondered when the interviews were recorded and at what stage PG might have registered the comments on his blog. It almost sounds as if CG was driving the BPS message ahead and PG was cooling off.

I can think of a long list of things that are not made better by exercise.

 

Spoiler: Large image

 

I very much hope he doesn't relapse – nobody wants to see yet another life wrecked. But if he does, he bloody well has the responsibility to say so. He decided to start this, after all.

 

Sigh. Will we see an even 'stronger' come back tour if he recovers the second time around?

 

There is something faintly amusing about that comment by CG that she needed to employ a personal trainer. Apparently fervent advocates of GET do not know the fundamentals of increasing exercise. Many of those whom she has in the past addressed on the subject would have been familiar with the exercises, and doing what was necessary, by the age of 14.