I was going to resume talking about the kayak build today but after some of the responses to me sharing my battle with ME/CFS on Monday (why I’m working on my hands and knees) I realized I have a unique opportunity here to give some visibility to this devastating but mostly invisible disease. So for the remainder of this kayak build (about 5 more posts) I’m going to write a short series essays relating to the illness.
Today I want to talk about history. If you read yesterday’s summary and are wondering why you didn’t know about a disease that is twice as common as Multiple Sclerosis and often much more severe, the complex answer is well illustrated by a very specific incident from ME/CFS history. In 1970 two psychiatrists examining NOTHING but 15 year old notes from other doctors published a paper which claimed that there was little organic evidence of disease and categorized ME/CFS as “mass hysteria”.
For reasons that I think have a lot to do with the fact that most patients were women, this utterly unsupported and unscientific view of ME/CFS spread through the public and the medical community like a cancer and an entire generation of doctors was raised to believe chronic fatigue syndrome was a psychosomatic disorder.
It was commonly believed the disease wasn’t serious because available diagnostic tests didn’t show abnormalities, which would be like saying that someone in 1850 couldn’t have had a heart attack because the EKG had not been invented yet.
Of course there were always dissenting doctors and researchers but the general tide of opinion led to a paucity of research funding and an epidemic of patient abuse that continues into the present day. Cementing the lack of awareness was the name Chronic Fatigue Syndrome itself, which connotates a vague impression of someone who needs to take more B vitamins, not someone with devastating neuropathy, and brain and spinal cord inflammation.
Driven by recent increases in research funding, significant pathology in ME/CFS patients is now well established. Unfortunately education about these advances has been insufficient to broadly shift outdated public and clinical attitudes towards the disease.
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