<
https://synergies.substack.com/p/mecfs-and-hivaids-a-tale-of-two-illnesses>
"In the 1970s and early 1980s, two terrible diseases silently, and almost
entirely unnoticed, became epidemics. These two were strange twins; with
similarities in history, form, and function. They brought ruination to lives of
untold millions of people; previously healthy people were struck down,
sometimes in the prime of their lives, with no idea what was happening, or why.
Baffled doctors had no answers. Many patients were dismissed, their suffering
seen as reflecting intrinsic moral or personal failings – a punishment from God
for laziness or sin. The two illnesses were not identical, however, and it was
those crucial differences that would ultimately send them, and all the unlucky
people whose lives they touched, down very different paths.
These two diseases were HIV (the human immunodeficiency virus), and ME/CFS
(known variously as mylagic encephalomyelitis or chronic fatigue syndrome).
Everyone knows what HIV is and has heard of its brutal final stage: AIDS
(acquired immunodeficiency syndrome). Teenagers learn about it sex ed class,
and colleges all over the country teach courses in the history of the disease.
Since the 1980s, the engineering problem of solving HIV has garnered billions
of dollars in government and philanthropic funding, and every year, new
groundbreaking discoveries are announced. The treatments for HIV are so
well-developed that a virus that was once a painful death sentence can be
managed with a few pills a day. Experimental total cures are being developed,
and an HIV vaccine is almost on the horizon. In the 40 years that HIV has
assailed humanity, scientists, doctors, and engineers have mounted a valiant
defense, turned the tide of battle, and seem poised to claim victory in what
would be one of the greatest triumphs of scientific spirit in human history.
In contrast, almost no one knows what ME/CFS is. Children don’t learn about it
in health class. Many doctors don’t even acknowledge that it exists, instead
writing patients off as neurotic, hysterical, or as suffering from some kind of
“psychosomatic illness” or a “phobia of exertion” (best treated with
cognitive-behavioral therapy). In the US and UK, ME/CFS care was dominated by a
cabal of psychologists who insisted that the disease was “all in the heads” of
sufferers and prescribed what was essentially a course in
“pulling-yourself-up-by-your-bootstraps” (called “graded-exercise therapy”),
which ultimately proved to be a catastrophic misjudgment that left patients
even worse off. When this “tough love” approach failed to help, one caregiver
infamously exclaimed “the bastards don’t want to get better”! Funding for
research into ME/CFS remains almost non-existent (one year, the National
Institute of Health allegedly wanted to allocate more money to male-pattern
baldness than ME/CFS), and there are no FDA-approved therapies or treatments.
While people with HIV are now able to live full and essentially normal lives
thanks to the miracles of modern medicine, millions of people with severe
ME/CFS remained confined to darkened bedrooms, unable to move, speak, or
tolerate sensory stimulation. Lying in bed with earplugs and eyeshades on,
living in a state evocatively called a “conscious coma.”
How did this happen? What led HIV and ME/CFS, twin children of 1980s that
started off with so many similarities, to such strikingly different endpoints
half a century later?"
Via "AM" in Violet Blue's
Threat Model Patreon lounge.
Cheers,
*** Xanni ***
--
mailto:xanni@xanadu.net Andrew Pam
http://xanadu.com.au/ Chief Scientist, Xanadu
https://glasswings.com.au/ Partner, Glass Wings
https://sericyb.com.au/ Manager, Serious Cybernetics
