IMHO, I blame two things. Misogyny, and a lack of high-tech diagnostic tools.
Misogyny: 95% of sufferers are women over “a certain age”! A lot of the medical cohort, particularly the senior ones were and still are male. Recent studies have shown that even today, a woman with chest pains, is more likely to be discharged than a man, and as a result, more are dying from heart attacks! Men don’t take women’s reports of pain as seriously as men.
It was literally only a few years ago that actual neurological change in FM patients was proven using state-of-the-art MRI and similar tools. Until then there were literally no measurable symptoms, the only patient-reported ones.
The two together led to a disastrous mix of lack of belief. Then some idiot insurers decided, on very scant evidence that more exercise was what was needed for a cure. This made many FM sufferers even worse and was followed up by more misogyny– “you’re not trying hard enough” Of course in the US, you have crappy health care, so this was pushed down every doctor’s throats at every opportunity, and had a worldwide impact, even on countries with great healthcare like the NHS here.
However, the NHS finally listed it as a lifelong condition a few years ago, and more evidence is stacking up. Reduced blood flow, massively more capillaries, drugs that act on the affected pain sensors that are working incorrectly. Finally, it’s on the way to being understood.
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