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

Barry said:
Is it necessarily for the Guardian to designate which experts a journalist can consult? Or can a journalist still be a journalist and do their own research for who to consult?
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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.
 
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.
 
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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
 
strategist said:
Is anyone still skeptical that long covid would help ME/CFS gain visibility and credibility?
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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:
mango said:
Sadly, generally there seems to be a lot of resistance among the Swedish covid people against any ME related talk/info. A lot of prejudice and stigma, lots of openly negative comments and complaints about ME spokespeople. For example, many of them get very disappointed/annoyed when ME specialists and researchers involved in ME research (Jonas Bergquist, for example) are quoted in news articles about long covid. Some even accuse the ME researchers of "taking advantage of a very vulnerable patient group in order to get more money for their own [ME] research".

My impression so far from reading opinion pieces and discussions on social media is that the Swedish covid people are intentionally advocating and lobbying for exceptions just for themselves, firmly distancing themselves from pwME and others with similar problems regarding healthcare and Försäkringskassan (the Social Insurance Agency). "There is no evidence of any connection between long covid and ME."
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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.
 
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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.
 
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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.
 
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Not to mention that, despite its central role in the BPS model, deconditioning has never actually been assessed in CFS patients.

It might seem common sense to assume it, but the road to scientific hell is paved with untested 'common sense' assumptions.

Indeed, the first order of business in any experiment or trial is to identify and test its underlying assumptions.
 
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strategist said:
I admit that I'm slightly worried that Monbiot will have the best intentions but make some mistake due to the complexity of the topic. Hopefully he'll send the article to an independent expert for review before the publication.
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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 ).
 
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Tia said:
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"
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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.
 
Fantastic article. Huge thanks to George Monbiot and anyone who helped him with accurate information.
He manages in quite a short article to cover history, the gaslighting of ME patients, NICE, DecodeME, and the problem of long Covid patients with PEM being advised wrongly to do GET.
We're about to see a wave of long 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.
[...]
Long Covid is shorthand for a range of conditions. Some scientists divide them into three broad categories, others into four. Of these, one seems to ring a bell. It’s a cluster of symptoms that bear a strong similarity to myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). This is a devastating condition that affects roughly a quarter of a million people in the UK, and is often caused, like long Covid, by viral infection.

Among the common symptoms of ME/CFS are extreme fatigue that is not relieved by rest, and “post-exertional malaise”: even mild physical or mental effort can make patients extremely unwell. Many sufferers are confined to their home or even their bed, with their working life, social life and family life truncated. There is, so far, no diagnostic test and no cure. A study published in the journal Plos One found that, of the 20 conditions it assessed, including lung cancer, stroke, MS and schizophrenia, patients with ME/CFS reported the lowest health-related quality of life.

[...]
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