Opinion: ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal - George Monbiot

"It’s the greatest medical scandal of the 21st century. For decades, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been told they can make themselves better by changing their attitudes. This devastating condition, which afflicts about 250,000 people in the UK, was psychologised by many doctors and scientists, adding to the burden of a terrible physiological illness.

Long after this approach was debunked in scientific literature, clinicians who championed it have refused to let go. They continue to influence healthcare systems, governments and health insurers. And patients still suffer as a result.

ME/CFS saps sufferers of energy and basic physical and cognitive functions, confining many to their homes or even their beds, often shutting down their working lives, social lives and family lives. The extreme seriousness of this condition, and the fact that there is neither a diagnostic test nor a validated treatment, places a special duty of rigour on doctors and researchers. But patient care has been compromised, and useful research inhibited, by the lingering conviction of many practitioners that ME/CFS is “psychosocial”: driven by patients’ beliefs and behaviour.

This was a story that found me. In 2021, after writing about long Covid, I was accused by the psychiatrist Prof Michael Sharpe of spreading it. Apparently, you could induce such illnesses by discussing them. Investigating further, I was astonished by the failure in his presentation to support his claim with evidence, and perturbed by his lack of satisfactory answers to my questions. Sharpe takes a similarly “biopsychosocial” approach to ME/CFS, one which at the time of his long Covid presentation still dominated medical practice in the UK."

https://www.theguardian.com/comment...atigue-syndrome-me-treatments-social-services

 

Merged thread

Great Article in The Guardian by George Monbiot published this morning - "You don't want to get better": the outdated treatment of ME/CFS patients is a national scandal

Anyone up to writing a letter? I'm afraid I just don't have the energy as have too much going on at the moment including trip to Dental Hospital on Thursday that I'm resting up for.

 

This is a really solid, much-needed article by George Monbiot that focuses on the bad science.

I love his concluding line: 'There is a psychological intervention that could improve the lives of people with ME/CFS: an apology and recognition of the harms they have suffered.'

 

Excellent.

 

George M is expecting some flak. If so I will probably respond with a letter.

 

Great article! George Monbiot is a very good ally

 

Excellent article.

I bet he'll get some 'incoming' unpleasantness in response.

I'm wondering if writing in support now is better than seeing what Wessely and Co respond with ? And reply to that?

 

A great article and thanks to George Monbiot. This is the reality of what's happened to us and how people with ME/CFS have been horribly let down.

This bit above though was a bit muddled, I thought. Those first two links are both referencing the Walitt et al paper in Nature Communications, but apparently to make differing and perhaps conflicting points. I'm not sure referencing Walitt et al is a good idea in the first instance, as although it suggests a putative physiological mechanism, the paper is dominated by the 'effort preference' narrative and frames ME/CFS as FND, which is obviously wrong, and can easily be manipulated by Sharpe and Wessely to fit in with their own hypotheses.

 

Looks as if that second links wrong - should be to the 'Anomalies' paper.
I will email George if that looks to be so.

 

Is this in the print version or just online?

 

Good to see this in the Guardian, given their historic support for the BPS crew and associated patient bashing.

 

It only went up online at 8am this morning, so hopefully it'll make the print version tomorrow?

Does anyone actually read the print versions of newspapers any more? OK, OK I know there are still a few people who don't have access to the web, but there can't be that many these days.

 

An error in the link is not going to cause any harm. Anyone who chases the links should see what has happened.

 

the link from guardian website links to anomalies paper. Dont know if it been fixed or was always correct but its fine as of now

 

Yes. We have taken a daily paper since finishing university. For decades it was the Guardian until I became more informed about ME. Mr B wrote to the editor with no success and we changed to the Times although we do change back occasionally for a spell.

If I remember correctly, it was via comments on a Times article which was feeding the BPS view that " activists" were silencing doctors/researchers that George Monbiot asked a question about ME to which several of us here responded.

https://www.s4me.info/threads/speci...y-reuters-march-2019.8557/page-20#post-151521

Very glad of George Monbiot continuing his interest in ME and repeatedly correcting the SMC pushbacks. It is good to have him as an ally because his interest is ongoing and thorough and the Guardian prints him.

The second link was still wrong before I started writing this but I am still in pem so has taken ages to write.

 

❤️ Brilliant

 

It is in the “Readly” version of today’s publication , in the Journal section. I think they only publish one version per day so it’s more than likely that it is in the print version today.