<
https://www.theguardian.com/science/2023/jul/09/microbiome-chronic-fatigue-me-long-covid-research>
"In 2019, years after developing the myalgic encephalomyelitis (ME/CFS) that
had kept her bedridden in a state of chronic pain and exhaustion, Tamara
Romanuk experienced something “miraculous”. After taking antibiotics prescribed
to treat a separate infection, she experienced a short-term remission in
symptoms. “I went from being bedbound to twirling outside,” Romanuk says. “I
had no idea that life could be so different from what I’d become adjusted to.”
Sharing her experience online, Romanuk, a former biology professor, discovered
that she wasn’t the only person who had had this experience. Both she and Tess
Falor, an engineer with a PhD, had developed ME/CFS years before and had picked
up a bacterial infection that required antibiotic treatment. Doctors had
advised them to take probiotic supplements to help the microbiome recover.
Afterwards, both experienced a dramatic remission in ME/CFS symptoms. They
called it a “remission event”. Romanuk and Falor have named their project to
investigate the experience the RemissionBiome.
Many patients with complex chronic illnesses are dismissed by doctors who don’t
believe in their symptoms or disease even when it leaves patients bedridden.
Romanuk was initially diagnosed with “conversion disorder” by a doctor who
thought the symptoms were psychological.
ME was recognised as a neurological disease by the World Health Organization in
1969. However, in the 1970s some researchers labelled it as hysteria, leading
to the US Centers for Disease Control to rename it as chronic fatigue syndrome
(CFS). The name was changed to ME in 2015 to help legitimise the symptoms and
experiences of patients. Still, the medical stigma persists. Conditions such as
ME disproportionately affect women, whose symptoms and concerns are often
ignored by doctors.
Many patients with long Covid face similar challenges. Since 2020, an estimated
1.8 million people in the UK have developed long Covid after a Covid-19
infection. The debilitating condition is known to cause more than 200 symptoms.
The most common include a loss of smell, brain fog, exhaustion, pain, exercise
intolerance and a susceptibility to infection. Coincidentally, long Covid
shares many symptoms with ME/CFS, including chronic pain, exhaustion, brain fog
and exercise intolerance."
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
