Chronic Fatigue Syndrome / Myalgic Encephalomyelitis

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For research, treatments, and personal stories regarding Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME). ME/CFS is a multi-systemic neurological disease, distinct from chronic fatigue as a symptom.

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‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot (www.theguardian.com)

submitted 8 months ago by bjoern_tantau@swg-empire.de to c/cfs@feddit.de

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cross-posted from: https://kbin.social/m/mecfs/t/891917

‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot

The notion that this illness is psychosomatic is having devastating effects, says Guardian columnist 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...

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[–] JohnnyEnzyme@lemm.ee 3 points 8 months ago

As a middle-aged bloke, I think I would have traded this disease for having no legs, but average energy. Sure I would have been cut off from various exercises and activities, but I also would have been able to pursue a career, start a family, have an easier time with relationships, and have my share of hobbies, presumably.

An example of one of the things that really crushed me was my pursuit of guitar. About 25yrs+ ago I bumblingly started with simple tutorials and internet tabs, and after a couple years found myself really humming along, my learning curve surprising me. Unfortunately, only a couple years later I found that I kept injuring myself via playing, sometimes via throwing my neck or back out, or more often my finger joints hurting more and more, making it harder and harder to fret properly.

Unlike sports, which I was able to play in small doses in my 20's, and which are a huge struggle for me today, I thought guitar would be something I could enjoy the rest of my life. Instead it became yet another pursuit in which I pushed through my CFS difficulties, only to be betrayed by my own body.

These doctors claiming psychosomatic causes are functionally nothing but quacks when it comes to true CFS/ME.