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Excellent Article in The Times today on ME.

Countrygirl

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https://www.thetimes.co.uk/article/...ck9DQwCp5rZS_clK4XwzuRY0262I60wn9wS7SHePKOYsc

Chronic fatigue syndrome: ‘It felt like I’d been in a car crash’
Asked what would change his life, a 14-year-old boy with ME said that what would help most was “being believed”.

Time and again in more than 4,000 written testimonies from a survey of ME sufferers, the desire to be believed is articulated.

Patients tell of extreme pain in muscles and joints, limbs that won’t respond to command, struggles to perform basic tasks, exhaustion after activity, “brain fog”, sleep that brings no rest, hypersensitivity to light and noise and, in the most severe cases, being bedridden.

Far too often, they say, health professionals tell them that these symptoms are caused by mental health problems or anxiety.

One woman from Birmingham was told her condition was “caused by emotional issues”. She added: “They maintained that it was likely because of autism and depression.”

Analysis of the Action for ME survey paints a bleak picture: 92 per cent of sufferers said they were isolated from the outside world; 88 per cent relied on family care, more than 60 per cent had had their symptoms for more than ten years. Many had given up on, or distrust, the medical profession.

Their stories are an indictment of years of debate about whether ME is a physical or mental health condition, instead of significant research to identify a cause.

Dr Muirhead learnt nothing about ME when she was a medical student and was dismissive of the condition after qualifying.

“I had very little time for patients with ME — I didn’t really understand the illness,” Dr Muirhead said. “It was very non-specific, it wasn’t taught very well at medical school and because I couldn’t categorise it or treat it I pretty much ignored that as a diagnosis. I genuinely did not believe in it.”

Her view changed when she was flattened by the illness and spent six months bedridden with crippling pain and exhaustion.
With her scepticism that ME existed at all, she did not recognise what was happening and thought she might have a brain tumour or multiple sclerosis because there were neurological symptoms including speech problems, tinnitus, tingling in her fingers and difficulties balancing.

She kept trying to work and run the family home: “I could barely peg out the washing but I was still doing it. I was still trying to cook a meal. I kept nearly flooding the bath, burning pans of pasta because I couldn’t concentrate for long.”

She was finally given a diagnosis of ME in July 2017. Even then, her problems with medical colleagues did not stop.
 

Countrygirl

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This is the article that was in The Times yesterday.

Note that the Royal College of Paediatricians (at the bottom of the article) say they approve of GET for ME and regard parents who resist this as harming their children and hence the Royal College is encouraging and supporting the diagnosis of FII in ME families and the intervention of police and social workers. (!)

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From above- this is just so lame.

“I had very little time for patients with ME — I didn’t really understand the illness,” Dr Muirhead said. “It was very non-specific, it wasn’t taught very well at medical school and because I couldn’t categorise it or treat it I pretty much ignored that as a diagnosis. I genuinely did not believe in it.”

Very non-specific, eh? Why don't you ask a question? Don't believe in it? I don't believe whomever you are Dr. Muirhead, that you even passed the first test.
 

PhoenixDown

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Chronic fatigue syndrome: ‘It felt like I’d been in a car crash’

With her scepticism that ME existed at all, she did not recognise what was happening and thought she might have a brain tumour or multiple sclerosis because there were neurological symptoms including speech problems, tinnitus, tingling in her fingers and difficulties balancing.
It's a sad state of affairs when doctors refuse to believe in an illness unless they get it themselves.
 
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Second star to the right ...
Note that the Royal College of Paediatricians (at the bottom of the article) say they approve of GET for ME and regard parents who resist this as harming their children and hence the Royal College is encouraging and supporting the diagnosis of FII in ME families and the intervention of police and social workers. (!)
Oh good Lord !!!

It just never ends or changes .... a great article on ME, substantiated by a Dr who finally blieved it in because she got it ..... and then the inevitable descent into hell with the GET crap, followed shortly, no doubt, by recs for treatment with CBT.
 

Countrygirl

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Times letters: Treatment for ME

Now do read this letter........carefully.

Does it seem ...........likely to you?

Think about it.

Notice some of the phrases.

Anyone know this 'lady'?

Who could it be?

Am I getting paranoid in my dotage?

WRITE TO LETTERS@THETIMES.CO.UK Friday June 26 2020, 12.01am.

Sir, I am glad there is to be more research into ME, a condition that has blighted my life, but am concerned that a lot of people want graded exercise therapy (GET) to be discontinued as a treatment (letters, Jun 25).​
I finally gained access to treatment in 2016, 15 years after the onset of symptoms. This treatment was primarily GET: within weeks I felt healthier and was sleeping better.
“Since treatment I have got myself to the point where I am able to work full-time for the first time in my life. That has the knock-on effect of solving my financial worries, thus
further improving my health.

Campaigning on ME is dominated by patient groups made up of people who did not respond well to treatment. Those, like me, who improve do not form groups, we move on with our lives.

It horrifies me that someone else in my position might be denied the help they need because it does not work for everyone.

Helen Nicholls
Woodford Green, Essex
 

wabi-sabi

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I would guess she was misdiagnosed with ME and actually had some other condition. If she went to a doctor that didn't understand what ME/CFS actually is, she may well have been told she had ME when she didn't. Now both she and the doctor think that GET will fix ME. The letter does come off as a bit condescending towards "people who did not respond well to treatment", but those of us that don't get better with GET are the ones that really have ME.

Do you feel there is something more sinister going on here?