Stunning article on ME in the Independent by Natalie Wright

Kathryn 1

@Copyright 2017 Kathryn 1. All rights reserved
http://www.independent.co.uk/news/long_reads/why-patients-me-demanding-justice-millions-missing-chronic-fatigue-illness-disease-a8133616.html

This is almost certainly the best article on ME ever published in the UK press. Thank you Natalie Wright! Brilliant stuff!


Compounding this dismissal meant another blow to patients: the coining of a new name. In the US, the term chronic fatigue syndrome or CFS was introduced in 1988, which was later adopted in the UK. Not only did the new name trivialise the disease, it was also too vague to distinguish ME from other fatiguing illnesses, meaning different illnesses causing fatigue were unhelpfully lumped together.
For patients, communicating the seriousness of their illness is often impossible.

“I had this experience of trying to describe my symptoms in words to my doctors for 18 months as I was getting worse,” explains Brea. “I would talk about a burning in my brain or my spine or the fact that I would lose the ability to speak or sometimes I would collapse on the floor and I couldn’t lift my head.” When she later requested her medical records almost all of these serious symptoms were translated into “headache pain”.

Psychosomatic explanations of the disease were being further developed by a small, but influential, group of psychiatrists in the UK. They developed a theory of ME based on the biopsychosocial model of illness, a framework for illness that has also been adopted by the Department for Work and Pensions (DWP), first fully embraced by New Labour. The biopsychosocial model states that illnesses are part biological, part mental, part social. This idea seems common sense, but in practice it is often the psychological elements that are emphasised. Thus, the “biopsychosocial” model of ME is that a patient may have originally had a virus but after that, symptoms are not primarily the result of an ongoing disease process at all. Instead, patients simply have “dysfunctional” or “false” illness beliefs and thus adopt the “sick role”. Spending too much time in bed is the reason they have physical abnormalities, as they become deconditioned due to “exercise avoidance”, and it is assumed that symptoms are reversible by the patient’s own efforts.

However, there is growing evidence that such an approach towards ME is not only inaccurate, but dangerous. Keith Geraghty, honorary research fellow at the University of Manchester and an expert in ME/CFS explains: “Many medical professionals do not view ME/CFS as a serious medical condition. Psychiatrists in the UK have done great harm to ME/CFS patients by promoting a largely psychological model of the illness that diverted research funding away from investigating the many biological abnormalities in the disease and this model has downplayed the severity of the illness.’
One charity, Tymes Trust, has advised around 200 families. None of these families were subsequently found to be at fault.

Robert was 12 when he first started graded exercise therapy. His mother, Lorraine, contacted The Independent to explain how the NHS physiotherapy he was asked to do drastically damaged his health. “Robert was moderately ill when the physio began but became severely ill and required a wheelchair after a few months. He was given exercises to do in a hydrotherapy pool, some involving swimming. After just a few months, he lost the ability to walk. His legs turned to jelly, he had severe pain, particularly behind his knees and he just couldn’t support his weight.
“The physiotherapist wouldn’t accept they were causing the harm and blamed my son for not trying hard enough, saying he didn’t want to get better; they would not accept that there was anything physically wrong with him.

“He had a fit in the pool where they were doing the exercises, which the neurologist later said was caused by extreme pain. Eventually, we had to get a charity to intervene so that we could stop the graded exercise. My son is now 21 and is still severely ill and housebound.”
Robert’s story is one of many, although the NHS does not keep a record of harms caused by graded exercise for ME.
 

Kathryn 1

@Copyright 2017 Kathryn 1. All rights reserved
This is so good that there is likely to be a 'phone call' from one institution to another :D to get it pulled, so read it as soon as you can.

Wessely, the abusive paediatric services, the medical profession and the DWP come out very badly!

Well done the brave Independent!

They deserve huge thanks from us for courageously telling the unvarnished truth about the corruption and the abuse that has plagued the ME community for decades.

At last, maybe the tide is turning!:happy::smuggrin:
 

Kathryn 1

@Copyright 2017 Kathryn 1. All rights reserved
When is the medical profession going to announce their heartfelt apologies for decades of negligence and abuse of ME patients?

As Lady Mar said in the House of Lords, these doctors who remain wilfully ignorant are an 'embarrassment to the medical profession'.


https://jcoynester.wordpress.com/2018/01/07/a-sudden-reversal-of-fortune-for-the-biopsychosocial-model-of-illness/



My intrusive thought I probably should not share: I wonder if Sir Simon Wessely – if he read this far this morning – is feeling small.

Two sobbing, ashamed physicians

I spoke at a showing of Unrest at Amsterdam Medical Centre in October. You can find a copy of a video here.
After the showing, I was leaving to meet friends for dinner. I stopped when I encountered two stylish women still sitting in their seats in the emptying auditorium, sobbing as if one of them had just received a diagnosis of cancer. I said “Excuse me, can I help?” One woman started to talk, but the other had to finish for her.
“My sister and I are both physicians. We just learned tonight how much harm we had been doing to our patients. We were only trying to do what was best for them, but we refused to listen to them. We feel very badly.”​
I said:
“I believe that you thought you would doing what was best. Now you feel differently. I’ll bet a lot of your colleagues aren’t there yet. Maybe you and your sister can feel a bit better about yourselves if you help your colleagues get there.”​
I turned and walked anyway without seeing their responses.
 
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Kathryn 1

@Copyright 2017 Kathryn 1. All rights reserved
More
.@_NathalieWright's withering @Independent piece lays bear the gaps in how #mecfs is viewed on either side of the pond and the vested interests that have contributed to the disability and death of millions.
5:46 PM - 6 Jan 2018



  1. Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
    More
    It is one of if not the first high-profile pieces to tackle the institutional incentives and various forms of motivated reasoning underlying the "biopsychosocial" model.
    4 replies23 retweets74 likesnifer Brea‏Verified account @jenbrea 13h13 hours ago
  2. More
    #mecfs is an extremely debilitating condition as well as an incredibly common one. It is also usually lifelong (hitting early, but rarely lethal), leaving many unable to work for decades. Acknowledging our existence would be unbelievably expensive.
    1 reply19 retweets76 likes


  3. Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
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    I've heard many patients argue that these facts are at the heart of why this condition and the people living with it have been so mistreated. But observing a set of facts isn't the same thing as proving intent.
    2 replies13 retweets40 likes
    Reply
    2
  4. Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
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    The ignorance may not be willful, merely convenient.


  5. Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
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    My most generous interpretation: everyone is the good guy in their own story and the motivation to remain the good guy can bend and distort all logic, data, reason and even empathy under its need. Less generous: it is *both* willful and highly convenient.
    2 replies16 retweets56 likes
    Reply
    2
  6. Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
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    First, there is the argument that disability benefits can make patients worse by fostering a "culture of dependency." Under a veneer of science, denying disabled #pwme the benefits that could prevent poverty, homelessness, death is not only cheap, it's doctor-recommended.



  7. Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
    More
    Then, there is this actual acknowledgement from a private insurer that #mecfs could cause them to "lose millions" and that it should be treated as "neurosis with a new banner."

 

Kathryn 1

@Copyright 2017 Kathryn 1. All rights reserved

  • Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
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    Jennifer Brea Retweeted Jennifer Brea
    It's astonishing to take a step back, to look at the arc of the last 30 years and realize the stigma wasn't just this amorphous, unfortunate, miasma. It was and has always been a weapon:
    Jennifer Brea added,
    Jennifer BreaVerified account @jenbrea
    I've made a practice of not publicly calling out Esther Crawley in part because the issues we face are so much bigger than any one researcher.
    Show this thread
    3 replies13 retweets51 likes


    Direct message

  • Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
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    One used to dismiss scientific criticism and discredit what patients have been saying about their lives, bodies, experiences for decades. Gaslighting on an epic scale.
    1 reply11 retweets48 likes

    Like
    48

    Direct message
 

Kathryn 1

@Copyright 2017 Kathryn 1. All rights reserved
I think you will find her on Phoenix Rising so you could ask her yourself @CJB

I think it is the best article on ME that has ever been published on ME. She has it herself, as you probably know, so she is something of an expert.

I think it must be the first time that a quality paper has attacked Wessely and is still in business. To my personal knowledge he is quick to threaten a law suit if he is criticised in public. Well done the Indie!

It would be a good idea to post a comment on the article and thank the paper.

It is a hopeful sign!
 

Not dead yet!

Well-Known Member
Nice. :)

I saw this as if reading it for the first time: "When she finally sees a neurologist, he diagnoses “conversion disorder”. Hysteria. There must be a trauma that she can’t even remember. There is nothing physically wrong with her that could be causing her symptoms."

It finally clicked into place what that evil sleep doctor was trying to do. She never said what her diagnosis was. But this is exactly what she was heading for. She had an assistant badger me until I told a story, any story, of a childhood trauma. Then she assigned me to a psychiatrist. I knew I was being dismissed and called crazy, but I've never seen the situation from this angle before. If I had agreed to the tests the psychiatrist wanted, who knows what would've happened. Thank God we have to give consent before they work us over. I had a chance to sense the trap.

[article]The waste of human potential caused by ME was recently reckoned to cost the UK economy £3.3bn a year in a report by The Optimum Health Clinic Foundation.Type your article here[/article]

So if we're worth that much, why can't that much be spent on research? The take away here is, even if we can't cure ourselves, curing this for future generations would put that much or more into the economy every year. The overall cost would be a pittance compared to the loss due to denialism.
 
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