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by npunt 1019 days ago
sigh no, this is not the generally recognized understanding of MECFS, just one hypothesis, and one that better explains fibro/pain [1]. It's also a conclusion not too distant from the 'its in your head' concept that has held back research in this field for decades.

A more recent hypothesis with some experimental evidence is related to ATP production issues, specifically the itaconate shunt. See this overview from MECFS expert Ron Davis filmed last week [2]

Disruptions to a healthy gut microbiome is another hypothesis that has a lot of interesting results. I'm involved in a study on this [3]

Saying 'I'm a physician, its best understood as...' suggests a level of certainty to a disease whose underlying causes are unclear and the subject of active research. It would be an extreme disservice to MECFS patients to just say 'do pacing and mindfulness' and not explore other very promising treatments.

That said, pacing is essential and CSS is worthy of additional study.

[1]: https://me-pedia.org/wiki/Central_sensitization

[2]: https://www.youtube.com/watch?v=7inKF32vtl8

[3]: https://remissionbiome.org