Stunning article on ME in the Independent by Natalie Wright

Discussion in 'ME/CFS and FM News' started by Kathryn 1, Jan 7, 2018.

  1. Kathryn 1

    Kathryn 1 @Copyright 2017 Kathryn 1. All rights reserved

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

    One charity, Tymes Trust, has advised around 200 families. None of these families were subsequently found to be at fault.

    IrisRV, Not dead yet!, CJB and 2 others like this.
  2. Kathryn 1

    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:
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  3. Kathryn 1

    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'.

    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.
    Last edited: Jan 7, 2018
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  4. Kathryn 1

    Kathryn 1 @Copyright 2017 Kathryn 1. All rights reserved

    Here is an excellent collection of tweets by Jen Brea of how the determination of the insurance industry and their medical advisors such as White aided by Wessley have had a devastating effect on the welfare and treatment of people with ME.
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  5. Kathryn 1

    Kathryn 1 @Copyright 2017 Kathryn 1. All rights reserved

    .@_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. [​IMG]Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
      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. [​IMG]Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
      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
    4. [​IMG]Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
      The ignorance may not be willful, merely convenient.

    5. [​IMG]Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
      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
    6. [​IMG]Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
      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. [​IMG]Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
      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."
  6. Kathryn 1

    Kathryn 1 @Copyright 2017 Kathryn 1. All rights reserved

    • [​IMG]Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
      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

    • [​IMG]Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
      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


      Direct message
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  7. CJB

    CJB Well-Known Member

    She's the very best face/voice we've ever had. Any suggestions on how to best support her?
    Kathryn 1 likes this.
  8. Kathryn 1

    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!
    Abrin likes this.
  9. Kathryn 1

    Kathryn 1 @Copyright 2017 Kathryn 1. All rights reserved

  10. Not dead yet!

    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

    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.
    Last edited: Jan 8, 2018
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