Guardian article mentioning but not endorsing (?) brain retraining

[Jonathan Edwards]

My maddening battle with chronic fatigue syndrome: ‘On my worst days, it feels almost demonic’

The long read: I suffered with my mystery illness for decades before gaining a diagnosis. Could retraining my brain be the answer?

www.theguardian.com

Rather long article mentions brain retraining, which ultimately fails. Not sure quite what the message is but the Guardian seems to be more open to giving space to ME/CFS voices?

 

[Braganca]

This is such an odd course of ME/CFS.. she’s hit with it for weeks or months at a time, but in between has complete remissions where she is healthy. I wonder how many people have this type and what it means. How do you recover like that? I would give anything to have that version of ME, which I’m sure is awful and hard but at least there are respites..

 

[Trish]

I think it's clear from the article that her trial of brain training seemed successful to her at first, but when she relapsed again she looked back and realised the remission simply coincided with her usual pattern of remission followed by relapse. She acknowledges it's woo just like all the other treatments she has tried.

I guess it's fine for individuals to tell their story, but I would have like to see some acknowledgement that her relapsing and remissions form of ME/CFS is unusual, with most of us doomed to stay sick without relief for decades.

 

[Eleanor]

It's sad to read that she partly blames herself for the 'brain retraining' not working (she wonders if she was too resistant to it). She describes a lifetime of doubting herself and getting doubt and blame from others - after that it's understandable that she feels that she has failed the treatment rather than the treatment failing her. Understandable but sad. (And the psychobabble purveyors know this and profit from it.)

 

[Braganca]

It's sad to read that she partly blames herself for the 'brain retraining' not working (she wonders if she was too resistant to it). She describes a lifetime of doubting herself and getting doubt and blame from others - after that it's understandable that she feels that she has failed the treatment rather than the treatment failing her. Understandable but sad. (And the psychobabble purveyors know this and profit from it.)

And the charlatan who sold it to her is obviously making an absolute killing. She doesn’t note at all that that is wrong — to be making money off desperate people using quack theories.

 

[Lou B Lou]

The pwME who wrote the Guardian article is a journalist, a former Guardian journalist, writer, novelist etc.

'Hermione Hoby is a British author, journalist, and cultural critic. As a journalist, she writes on books, music, theatre and feminism. She is the author of the novels Neon in Daylight and Virtue.
Hoby worked at The Guardian until moving to New York City in 2010 to become a freelance culture writer.'

Hermione Hoby - Wikipedia

en.wikipedia.org

.

 

[Dolphin]

https://x.com/i/trending/2026272410572378516

Guardian Publishes Hermione Hobhouse Article on Her Battle with Chronic Fatigue Syndrome and Psychological Factors in Recovery
Last updated 1 hour ago
Hermione Hobhouse published an article in The Guardian detailing her ongoing battle with chronic fatigue syndrome (ME/CFS). The article discusses psychological aspects, brain retraining, and psychosomatic explanations in auto- and neuroimmune disorders. She acknowledges partial recovery while rejecting full triumphant narratives or dismissal of brain retraining.

 

[Eleanor]

https://x.com/i/trending/2026272410572378516

Guardian Publishes Hermione Hobhouse Article on Her Battle with Chronic Fatigue Syndrome and Psychological Factors in Recovery
Last updated 1 hour ago
Hermione Hobhouse published an article in The Guardian detailing her ongoing battle with chronic fatigue syndrome (ME/CFS). The article discusses psychological aspects, brain retraining, and psychosomatic explanations in auto- and neuroimmune disorders. She acknowledges partial recovery while rejecting full triumphant narratives or dismissal of brain retraining.

A "summary" that doesn't even get the writer's name right. About standard for "X" these days?

 

[Lou B Lou]

'That article leaves ME sufferers cold and is not the ME story of the moment. The Now story is the deaths of ME patients in UK hospitals, being refused vital tube feeding, hospitals refusing to follow NICE. NHS services for mild/moderate patients, leaves the most sick abandoned.'

 

[MrMagoo]

Funny sort of ME where you don’t get PEM

 

[Evergreen]

I really like her writing. There are some lovely turns of phrase and little humorous twists. I will watch out for more by her.

Instead, being ill felt – and still feels – more like a thick, obscuring cloud. When that cloud descends, my blood feels like old glue mixed with whatever you’d scrape off the bottom of a Swiffer.

The second, more significant moment came when this same kind young woman glanced at my intake form, saw “ME/CFS” and said, “Oh, you need to try brain retraining.” There was a simple confidence in the way she said this, as though brain retraining – whatever that was – were the insulin to my diabetes, or inhaler to my asthma.

The confidence I heard in her voice clashed with my own scepticism. First, there was the name. I liked my brain best of all my organs; I didn’t think it needed retraining. I also felt a general resistance, calcified from thwarted hopes, to any new treatment.

The doctor was a bluff Englishman with a plummy accent and martial bearing, and strictly side-parted white hair.

I groaned when Jason McT appeared. When I first came across him, he was sick but making videos about everything he was trying and extolling the virtues of whatever it was. I really struggle with the thought of people who are ill giving him medical information and placing their trust in him. I'm looking forward to a day when Hermione and the rest of us have proper help from competent professionals armed with effective treatments.

She describes improving as she does brain retraining, attributing the remission to brain retraining and getting swept up in "a period of quasi-religious mania" before realising, when she relapses:

Only in this moment did it occur to me that I’d recovered from the previous episode in the usual amount of time.

It's interesting to read an account of relapsing remitting ME/CFS. It's not that common - maybe 7-13% - so we don't hear much about it. While I'm jealous of the remissions, it must be so dispiriting to relapse again and again. And very difficult in terms of career, family etc.

One thing I didn't follow was that she mentions POTS but describes what sounds more like postural hypotension:

I had a headache, a sore throat and swollen lymph nodes, body pains both dull and sharp, fatigue and weakness, plus something I later learned went by the name of “postural orthostatic tachycardia syndrome”: a faintness and momentary blacking out upon sitting or standing up.

My test results were indeed fine, and so were my vitals, more or less (lowish blood pressure), but the situation clearly was not.

I learned that the weird gluey sensation and temporary loss of vision I experienced when I stood up was not some negligible quirk, but an authenticating symptom caused by low blood pressure.

Anyway, that's for her and her doctor.

 

[Evergreen]

This is such an odd course of ME/CFS.. she’s hit with it for weeks or months at a time, but in between has complete remissions where she is healthy. I wonder how many people have this type and what it means.

See some studies here where about 7-13% report they have a relapsing-remitting course of ME/CFS.

 

[MrMagoo]

Why do they always have a sibling with ME/CFS? the psychologists would almost be useful for exploring that.

 

[ScoutB]

And the charlatan who sold it to her is obviously making an absolute killing. She doesn’t note at all that that is wrong — to be making money off desperate people using quack theories.

Yes, I was a bit disappointed she seemed ambivalent about it in the end. I get the feeling she is still torn and feeling pressured to play the model patient -- worrying/internalizing that her healthy skepticism about woo treatments is snobbery.

I can imagine the stigma and patient-blame being especially hard to shake free of when one gets ME/CFS so young.

Unrelated, I liked this paragraph on how hard it is to describe the illness. The symptoms listed out seem like they should be individually manageable but of course it's so much worse than that. We don't have good terminology for the experience of being super sick.

I had a headache, a sore throat and swollen lymph nodes, body pains both dull and sharp, fatigue and weakness, plus something I later learned went by the name of “postural orthostatic tachycardia syndrome”: a faintness and momentary blacking out upon sitting or standing up. When I list the symptoms in this way, as a collection of discrete and manageable items, it seems false. I wish things felt discrete and manageable. Instead, being ill felt – and still feels – more like a thick, obscuring cloud. When that cloud descends, my blood feels like old glue mixed with whatever you’d scrape off the bottom of a Swiffer. During bad episodes, I can’t quite locate my mind, or my personality. Reading is impossible. TV is abrasive. Breathing feels effortful, forming words is a strain.