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Quote by Margaret Williams

“For the last 48 years, myalgic encephalomyelitis (ME) has been formally classified by the World Health Organisation as a neurological disorder but for the last 29 years a group of UK psychiatrists (known as the Wessely School) have denied it exists other than as an aberrant belief; they insist that it is a mental (behavioural) disorder that can be cured by graded exercise and “cognitive re-structuring”.”

Quote by Margaret Williams

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Margaret Williams

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“It’s absolutely retrogressive to suggest [ME] CFS is in the heads of patients. I have seen patients commit suicide, or have been otherwise destroyed, because some professor has diagnosed them as having a psychiatric illness.”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Misdiagnosis

Author:Peter Behan

“people with ME/CFS do not have “fatigue as their main symptom”; they have post-extertional fatigability accompanied by malaise as their main symptom (their voluntary muscles do not work properly and are exquisitely painful after exercise)”

Fatigue Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Malaise

Author:Margaret Williams

“(The blood vessels) must be constricted so tight in the brain that little blood gets through. Perhaps it is one of the hormones that constricts blood vessels. Perhaps an infection of the blood vessels. Perhaps it is an excessive sensitivity of the blood vessels to adrenaline….CFS is a devastating physiologic process that undermines the body’s energy and the brain’s cognitive ability….CFS is not…an illness behaviour for lazy people. The consequences of this illness weigh heavily not only on the victim, but also on family, community and society.”

Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Invisible Illness Quotes Illness Stigma

Book:Faces of CFS

Source: Faces of CFS

“It [ME] is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Misdiagnosis

Author:Daniel L. Peterson

“Individuals are often stigmatized and told their illness isn’t real… People with [ME] CFS face an incredible burden just getting doctors to take their symptoms seriously”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Invisible Illness Stigma

Author:Barry E. Hurwitz

“I am so fed up of having to explain to people that Danny is not just tired; if only that were the case. We have lost friends, good friends, when we ran out of patience with explaining that Danny was off school so much, not because he had friendship issues or didn’t like his classes, but because he had an illness that seemed to be eating him up from the inside, despite it not really being visible on the outside.”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Invisible Illness M E Cfs M E Invisible Illness Stigma

Author:Sonya Chowdhury

“I am a person suffering from chronic fatigue syndrome and I am appalled that it has been given such a trivial name. Here is a disease that totally disables most of its victims; a disease that causes balance disorders, resulting in some of us requiring wheelchairs, cognitive disorders that leave us unable to perform formerly simple mental tasks, and immune disorders that lay us open to multiple infections and to autoimmune problems. And all the medical profession can come up with to define this syndrome to the general population is "fatigue!”

Fatigue Chronic Illness Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs

Author:Jane Cuozzo

“derelict. my voice cracked and yolk poured out. wind chimes rigid, no breeze, no song. my wings found hidden in your suitcase. pleas for help mistaken for a swan song. i'm stuffing pages from my journal down my throat as kindling. hoping the smoke will get the taste of you out of my mouth. he looks at me from across the room and all i want is to push him against the wall. ravage. ravage. carnage has never been more vogue. is it still art if it doesn't bring you to your knees? lover, let me prey at your altar. let me bare my fangs in praise. don't i look so pretty in a funeral shroud? i keep time with the click of my creaking bones. dance with me under the milky translucence of a world suffocating. how did you find me? i buried myself beneath the cicadas. is a girl trapped in glass still a prize? let me get under your skin. i want to know what your fears taste like. i want to consume.”

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Book:calloused: a field journal

Source: calloused: a field journal

“It must be noted that there is no proof that it is justified to apply the label somatisation to such conditions as chronic fatigue syndrome and several more illnesses that established medicine has so for failed to explain scientifically. ……Don't hesitate to ask questions about scientific evidence behind this talk about somatisation. Be persistent, because a diagnosis of somatisation is definitely not an innocuous label. It will close various doors and lead (to) treatments that usually get nowhere.”

Myalgic Encephalomyelitis Me Cfs Invisible Illness Stigma Medically Unexplained Symptoms Somatic Symptoms Somatization Somatoform Misfiagnosis

Author:Per Dalén

“I hope you are not saying that (ME)CFS patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and I can tell you that if I had to choose between the two illnesses (in 2009) I would rather have HIV.”

Hiv Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Invisible Illness Invisible Illness Stigma

Author:Nancy G. Klimas