Very sad to read of this 23-year-old with severe ME, ill since age 4.
Authorities are trying to claim that improvement/recovery is possible with the right attitude! They're using this to deny an application for a disability payment. ☹️
An example of the problem biopsychosocial models for ME/CFS cause.
#MEcfs #PwME #CFS #SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
2/
“Nav’s lawyer argued that the prognosis for ME was good, and that recovery from ME was about faith and hope and motivation. The lawyer went to great lengths to insinuate that the low level of functioning was due to the family’s focus on activity adjustment, and that they believed that ME was a biomedical disease (according to the lawyer, a view shared only by a small, peculiar group, and contrary to “general opinion”), (contd)”
#mecfs
@mecfs
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“(Contd) which meant that they did not seek documented effective treatment in the public health system, and only “alternative” practitioners such as the Lillestrøm Clinic. People who believe in the biomedical model are just waiting for a pill, he claimed, and they are not open to other approaches, or motivated to try. “If they continue as they are now, he will never recover!”
4/
Nav’s consulting physician: “believed that activity matching does not work, they do not see the effect of it (and have thus missed the point that it is a coping strategy, not a treatment). She believed that there are “many” who recover. When Anne Kielland asked why these recoveries were not visible in the statistics, she could not answer.”
@mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
5/
Nav’s consulting physician “talked a lot about “motivation,” and that a lack of faith in treatment would cause it to not work. I took it as meaning that the family and Kolbjørn lacked motivation, which was why he was still sick.”
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
6/
Nav’s consulting physician “said that absolutely everything that can be thought of as leading to improvement should be tried. You have to be open to other techniques and ways of thinking, when what you have already tried does not work, she said. Rapid changes can occur when the patient becomes curious about new ways of thinking about the disease. (contd)
7/
“(Contd) They must move away from the idea that activity is dangerous, and instead say that activity is necessary and important, it provides safe exploration of activity, instead of it feeling dangerous. Severity does not mean anything for carrying out treatment.
She believes that there are therapists who can help everywhere in the healthcare system, so there is no argument that treatment is not available.”
@tomkindlon
If she made the same argument of “there are therapists who can help everywhere in the healthcare system, so there is no argument that treatment is not available” about missing limbs, she’d be laughed out of the court room. But with an invisible illness, it’s always the patients fault of course.
Tom Kindlon
Curio