Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
Discuss the article on the Forums.

Time for Unrest: Why patients with ME are demanding justice article

Discussion in 'General ME/CFS News' started by mermaid, Jan 7, 2018.

  1. mermaid

    mermaid Senior Member

    Messages:
    617
    Likes:
    1,128
    Cornwall, UK
    Last edited: Jan 7, 2018
  2. Peter Trewhitt

    Peter Trewhitt

    Messages:
    20
    Likes:
    148
    A surprisingly good article for a British national newspaper. Are the PACE appologists and the Science Media Centre losing their strangle hold on the British media?

    I do wonder what the likes of Wessely and Crawley think if they bother to read it. They are practiced at ignoring patients and dissenting scientists, how will they deal with the court of public opinion. Interestingly the article named Wessely but did not directly mention Crawley, though she is now the most prominent GET and directed CBT advocate, and the clinician thought to be most associated with persecuting parents/guardians for rejecting what is in effect medical abuse of their children who actually have ME.

    Let's hope Crawley's supporters in the Bristol University hierarchy read this and actually recognise it relates to her research and her false victim narrative. Also lets hope that the numerous bodies that give her free reign to promoted bad science and false vilification of her critics start to challenge her.
     
  3. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Messages:
    1,112
    Likes:
    4,512
    Toronto, Canada
    Maybe this is an easy peasy project for a few UK ME folks to send them a link to the article?
     
    Starsister, Mel9, Mary and 2 others like this.
  4. Mary

    Mary Senior Member

    Messages:
    2,981
    Likes:
    6,830
    Southern California
    This is an amazing article - I agree - the best I've ever seen! :thumbsup:
     
    Starsister, Starlight, MEMum and 4 others like this.
  5. unicorn7

    unicorn7 Senior Member

    Messages:
    114
    Likes:
    440
    Whoop whoop:thumbsup::thumbsup::thumbsup::thumbsup::thumbsup:
    I hope other countries will follow:nervous:
     
    Starsister, MEMum, Mel9 and 2 others like this.
  6. Gemini

    Gemini Senior Member

    Messages:
    667
    Likes:
    1,218
    Outstanding article!:thumbsup::thumbsup::thumbsup:

    Comprehensive, and accurate, start to finish!

    Thanks for finding it @mermaid!
     
    MEMum, Peter Trewhitt, Mel9 and 4 others like this.
  7. Mary

    Mary Senior Member

    Messages:
    2,981
    Likes:
    6,830
    Southern California
    I just left a comment - easy to do! and probably a good thing to do to encourage this sort of reporting ---

    The article is an eloquent demonstration of just how powerful Unrest is - it would not have been written a year ago.
     
    Starsister, MEMum, lafarfelue and 3 others like this.
  8. Mel9

    Mel9 Senior Member

    Messages:
    500
    Likes:
    1,202
    NSW Australia
    I 'liked' your Excellent comment Mary. There are many other supportive comments there now. With Unrest and now this wonderful article I haven't felt so optimistic for years.
     
    Starsister, MEMum, Mary and 1 other person like this.
  9. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,503
    Likes:
    18,114
    UK
    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/20...une-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.
     
  10. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,503
    Likes:
    18,114
    UK
    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.

     
    SueJohnPat and Mel9 like this.
  11. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,503
    Likes:
    18,114
    UK
    1. .@_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
        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. [​IMG]Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
        More
        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. [​IMG]Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
        More
        The ignorance may not be willful, merely convenient.

      5. [​IMG]Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
        More
        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. [​IMG]Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
        More
        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.
        [​IMG]
      7. [​IMG]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."
        [​IMG]


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


     
  12. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,503
    Likes:
    18,114
    UK
    • Direct message

    • [​IMG]Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
      More
      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
     
    Peter Trewhitt likes this.
  13. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,503
    Likes:
    18,114
    UK
    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 wrongwith 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.
     
  14. alex3619

    alex3619 Senior Member

    Messages:
    12,651
    Likes:
    35,751
    Logan, Queensland, Australia
    We could start a register of harms from GET if there were will to do so and some organisational backing, even if that meant we had to create a new organisation.
     
  15. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

    Messages:
    604
    Likes:
    11,242
    Great idea!
     
    MEMum, alex3619 and pattismith like this.
  16. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,915
    Likes:
    3,567
    Somewhere near Glasgow, Scotland
    yeah, how about reviving the Special Operations Executive? :p
     
    MEMum likes this.
  17. ash0787

    ash0787 Senior Member

    Messages:
    308
    Likes:
    585
    getting a little tired of people, usually my family and sometimes when I'm present saying that I have a mental illness, sometimes to strangers by way of introduction, then they make assumptions about you, regardless of the actual situation.

    Looking at this article it seems to be the same story of different interest groups competing against each other for personal gain with no regards for objective morality, there seems to be no clear route for retribution against these groups, the physiotherapist, the insurers, when they knowingly do evil. I'm starting to want a more unified society where it follows one or more male individuals who gain their position through personal traits and merits / vision rather than abusing a weak democracy ( Theresa May ), punitive violence may be applied in the traditional manner in situations such as these. That does sound harsh and outdated and I would like to think people have freedom to hold different interpretation such as the origins of this disease, and there should be freedom for capitalism to operate, but this illness has greatly reduced my compassion, and I don't like the direction the world is headed in.
     

See more popular forum discussions.

Share This Page