George Monbiot on ME/CFS, PACE, BPS and Long Covid

I suspect the themes in his article will be the same as the ones in his tweets: harmful short-termism, serious problem not acknowledged, need more research, patients need help.

 

It may not be written for the paper – he has a column, but he's not a full-time staffer. Though it would be good to get a well-written Guardian piece focusing on this issue for once! If he gets it right, it supports and informs Covid patients and throws a bit more public shade on those who've abused (and enabled the abuse of) pwME for decades.

 

Might be worth mentioning this point to GM on Twitter since it's a public gallery. Almost like a pre-emptive strike. Almost.

 

I'm pleased that more journalists are becoming interested in the subject. It seems Monbiot has a grasp of the big picture, but should he make some rookie mistakes in a first column about a complex field with lots of history, I hope he has integrity enough to try to correct them and perhaps even dig a bit further. Wasn't this how it all started with David Tuller's work years ago? I'm rather pleased he wrote that first article on PACE

Mistakes are ok to make, it's what it's done with them afterwards that matters most.
Having said that, I agree it would be splendid if Monbiot nails it on first attempt.

 

https://www.s4me.info/threads/speci...cientists-say-reuters-march-2019.8557/page-19


It's not the first time George Monbiot has expressed an interest in ME/cfs.
In March 2019 he expressed an interest in why patients would not want their illness researched in comments on an article in the Times that month in which Michael Sharpe complained about being silenced by trolling from patients.

It generated a lot of comments in the Times and discussion on here (above thread) ; some responses from members here were posted in the Times comments. Hopefully they pointed Monbiot in a direction that revealed what has really been going on.

And even more hopefully, in the light of his current expression of interest, he has been gaining more useful information in the intervening 2 years. Fingers very crossed.

ETA: and maybe long covid has piqued his interest

 

Yes, I am. I think it's too early to tell here in Sweden, it could still go either way it seems.

Sadly, so far I haven't seen any posts or discussions in Sweden along the lines of Monbiot's curiosity and openmindedness.

I wrote the following in October. As far as I can tell, nothing has changed for the better since:

For example, there is no mention at all of ME or CFS on the Swedish covid association's website, nor in their press releases and media interviews.

It seems to me that ME is intentionally being kept out of the discussion.

 

https://twitter.com/user/status/1348530908941443074

 

Boy is this Long Covid thing really putting a wrench in the whole "illness label" nonsense.

Oh yeah, people definitely "want" the fashionable illness label. Absolutely. Yes. Smart. Very smart people say this. I'm sure they will "clarify" this some day, insisting they have always said those other things they never actually said.

 

Will any CBT/GET illness model believers change their minds due to covid? I'm constantly hearing from covid and long covid patients themselves all the things we patients have been saying. They just want to get on with life but find out empirically that they can't. Reducing activity levels is a necessity, not done out of an unjustified fear. The long covid people are not seeing any connection between their illness and stress or emotional difficulties. They have unpredictable relapses: they think of themselves as recovering (a positive attitude) and still relapse. Deconditioning has clearly nothing to do with a person losing a good chunk of their fitness and function in one day. Some find it absurd to even be told to exercise when they can barely walk and they weren't ever hospitalized.

 

https://twitter.com/user/status/1348010357328142337

Code:

https://twitter.com/TomPMarshall/status/1348010357328142337

https://twitter.com/user/status/1347862225885810688

Code:

https://twitter.com/TomPMarshall/status/1347862225885810688

https://twitter.com/user/status/1347930744371486720

Code:

https://twitter.com/TomPMarshall/status/1347930744371486720

 

Some of the replies from patients seem overly confident on things in a way that I don't think is great. Probably hard to avoid that. I generally don't think twitter is a good format for expressing concerns about complicated problems though, so it could be that people used to it give each other extra leeway.

 

1

I have suggested he touch base with Jerome Burne? Jonathan, you have a good relationship with Jerome. You might feel inclined to ask him to get involved to steer this through I would suggest?

 

There is an article by George Monbiot in the Guardian today, the lead article of the inside section 'the Journal', entitled " A year on, our leaders still have no plan to control covid." It is what it sounds from the title, a critical overview of the way the Government have handled covid.

There is only a very brief mention of long covid and no mention at all of ME so doubt this is the article he referred to in his tweet a couple of days ago. (#2, @Robert 1973 ).

 

Just noticed this article has been published on The Guardian today

https://www.theguardian.com/comment...g-covid-when-will-ministers-take-it-seriously

"The NHS must learn from its mistakes with other post-viral conditions such as ME/CFS – more research is vital"

 

Wow. I can't speak. Can anyone who tweets please thank George Monbiot?

 

Wow! He nailed it!!


If one good thing emerges from this pandemic, it could be more recognition and funding for people with ME/CFS. This must begin – and it’s amazing that in 2021, it still needs to be said – with doctors listening to patients and taking them seriously. Treatments should be based on empirical findings rather than old, discredited ideas.

The NHS is now setting up specialist clinics to treat long Covid. But already, apparent mistakes are being made. Without the necessary caveats, the NHS recommends steadily increasing levels of exercise for people suffering from post-Covid fatigue. But as ME/CFS patients with post-exertional malaise know, this prescription, though it sounds intuitive, could be highly damaging.

We need massive research programmes into both long Covid and ME/CFS, coupled with better information for doctors. But above all, we need something that currently seems a long way off. A government that gives a damn.

 

Merged thread

George has absolutely nailed it:
https://www.theguardian.com/comment...g-covid-when-will-ministers-take-it-seriously

I can’t remember a comment article on ME/CFS that covers so much and gets so much right. Almost every line is worth quoting.

“ME/CFS has been disgracefully neglected by science and medicine.”

https://twitter.com/user/status/1352215566233300998

 

Agree 100%