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Quote by Charlotte Blease

“research shows that the experiences of patients, and the attitudes of health professionals, is mixed; nonetheless, we conclude that testimonial injustice – the deflation of CFS/ME patients’ testimony on the ground of unjustified negative stereotyping – appears to be a continued problem within mainstream healthcare across a range of settings and countries. Furthermore, it would seem that the testimonial injustice is sustained and also accompanied by hermeneutical injustice because the dominant group (health professionals) may routinely fail to provide adequate training about CFS/ME, leading to prejudiced deflations of patient credibility, and/or an unfair lack of shared concepts with which to make mutual sense of the experience of the patient.”

Quote by Charlotte Blease

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Charlotte Blease

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“Biopsychosocial discourse often portrays these patients as possessing unhealthy personality traits, such as ‘maladaptive perfectionism’ [67,68]; yet such assertions are not well supported, many studies find no significant differences between ME/CFS patients and the general population with regard to distinctive personality profiles [69–72]. A Swedish study of physicians’ attitudes to CFS found that physicians often downgrade the seriousness of this illness to ‘non-disease’ status and view patients as being ‘illness focused’, ‘demanding’, and ‘medicalising’ [73]. Given community-based doctors have limited knowledge of ME/CFS [74] and doctors display high levels of skepticism in this illness domain [75], it is unsurprising that many patients with ME/CFS report problematic clinical interactions [29–31,76]. Patient surveys conducted by patient organizations confirm high levels of patient dissatisfaction in the medical encounter.”

“When it comes to hierarchies of illness, evidence shows that chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME), features at the bottommost end of the medical “favoured” list. In the 1980s, newspapers helped coin the dismissive label “yuppie flu”; today, ME/CFS sufferers are still being referred to psychotherapists to work on their “faulty” illness beliefs.”

“When a misfortune strikes us, we can overcome it either by removing its cause or else by changing the effect it has on our feelings, that is, by reinterpreting the misfortune as good, whose benefit may only later become clear. Religion and art (as well as metaphysical philosophy) strive to effect a change in our feeling, in part by changing the way we judge experiences...and in part by awakening a pleasure in pain, in emotion generally...The more a person tends to reinterpret and justify, the less will he confront the causes of the misfortune and eliminate them; a momentary palliation and narcotization (as used, for example, for a toothache) is also enough for him in more serious suffering. The more the rule of religions and all narcotic arts decrease, the more squarely do men confront the real elimination of the misfortune - of course, this is bad for the tragic poets (there being less and less material for the tragedy, because the realm of the inexorable, invincible fate grows ever smaller) but it is even worse for the priests (for until now they had fed on the narcotization of human misfortunes).”

“The new name 'Chronic Fatigue Syndrome' is far too benign. It trivialises. How seriously would you take something called 'Chronic Thirst Syndrome'? And yet, diabetes is a very serious condition. 'Disabling Fatigue and Immune Dysfunction Syndrome' does a bit better; while more research should allow something more specific. (Thompson, 1992:27)”

“Mark Vink is a physician in the Netherlands who suddenly fell ill with chronic fatigue syndrome (ME/CFS). He wasn’t just your typical physician; he also happened to have a brown belt in judo, was the former captain of a Dutch national field hockey championship team and was a marathoner and triathlete. In other words, the guy was a stud who loved to test himself physically – the last person anyone would ever expect to get ME/CFS. Or end up bed bound. Or end up using a six yard tramp from his bed to the bathroom to test his exercise capacity. But that’s what happened. Mark Vink’s ME/CFS story – like many stories – is so striking in its suddenness and so devastating in its comprehensive that it beggars the mind to think that anyone could believe his downfall could have other than a physiological cause.”