• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

mermaid

Senior Member
Messages
714
Location
UK
Last edited:
Messages
20
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.
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
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.

Maybe this is an easy peasy project for a few UK ME folks to send them a link to the article?
 

Mary

Moderator Resource
Messages
17,291
Location
Southern California

Mel9

Senior Member
Messages
995
Location
NSW Australia
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.

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.
 

Countrygirl

Senior Member
Messages
5,399
Location
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.
 

Countrygirl

Senior Member
Messages
5,399
Location
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. 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
      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. Jennifer Brea‏Verified account @jenbrea 13h13 hours ago
      More
      The ignorance may not be willful, merely convenient.

    5. 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. 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.
      DS5-GIMU8AAtp5v.jpg

    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."
      DS5-O33VwAAoVUu.jpg


    • 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


 

Countrygirl

Senior Member
Messages
5,399
Location
UK
  • Direct message
 

Countrygirl

Senior Member
Messages
5,399
Location
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.
 

ash0787

Senior Member
Messages
308
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.