3 ms·

For anyone generally curious about the ME/CFS patient experience and state of medicine, there are a couple good articles in The Atlantic[0][1]. For those inter

For anyone generally curious about the ME/CFS patient experience and state of medicine, there are a couple good articles in The Atlantic[0][1]. For those interested in latest research, Dr. Bhupesh Prusty presented[2] a very plausible hypothesis with detailed evidence[3] of virus-triggered autoimmunity causing mitochondrial dysfunction in endothelial cells (vascular system). And there's a promising treatment for Long COVID with a study[4] claiming improvement in many symptoms, and describing the targeted mechanism of disease pathology (also vascular system). Needs trials and replication, or until then doctors willing to risk off-label treatment. [0] https://web.archive.org/web/20230728074923/https://www.theatlantic.com/health/archive/2022/09/mecfs-chronic-fatigue-syndrome-doctors-long-covid/671518/ https://web.archive.org/web/20230728074923/https://www.theat... [1] https://web.archive.org/web/20230731145624/https://www.theatlantic.com/health/archive/2023/07/chronic-fatigue-long-covid-symptoms/674834/ https://web.archive.org/web/20230731145624/https://www.theat... [2] https://www.youtube.com/watch?v=sBmtnMenHgw https://www.youtube.com/watch?v=sBmtnMenHgw [3] https://www.medrxiv.org/content/10.1101/2023.06.23.23291827v1.full-text https://www.medrxiv.org/content/10.1101/2023.06.23.23291827v... [4] https://www.researchsquare.com/article/rs-2697680/v1 https://www.researchsquare.com/article/rs-2697680/v1

Aurornis 3y ago
A warning about Long COVID research: Any long-term trials that don't have a control group are virtually useless. When large Long COVID patient groups are studied without any treatment, the number of people reporting Long COVID symptoms declines over the course of the study. The takeaway is that for many (but not all!) Long COVID symptoms naturally get better over time. This is a huge problem for Long COVID treatment studies that don't include a control group because there's no way to tell if the treatment made the patients better any faster than they would have normally healed.
- barryaustin 3y ago
  Yes, that's why I said "needs trials and replication". That small clinical study is useless for insurance companies and standard medical practice today. But it is very useful to point the way toward promising areas of further research, and for any pioneering risk-takers who might be willing to try. That is, after all, how we learned that stomach ulcers are not psychosomatic (caused by "stress"), but rather by the bacterium H. Pylori. A doctor infected himself, got ulcers, and cured himself with antibiotics!

Aurornis 3y ago

A warning about Long COVID research: Any long-term trials that don't have a control group are virtually useless. When large Long COVID patient groups are studied without any treatment, the number of people reporting Long COVID symptoms declines over the course of the study. The takeaway is that for many (but not all!) Long COVID symptoms naturally get better over time. This is a huge problem for Long COVID treatment studies that don't include a control group because there's no way to tell if the treatment made the patients better any faster than they would have normally healed.

barryaustin 3y ago
Yes, that's why I said "needs trials and replication". That small clinical study is useless for insurance companies and standard medical practice today. But it is very useful to point the way toward promising areas of further research, and for any pioneering risk-takers who might be willing to try. That is, after all, how we learned that stomach ulcers are not psychosomatic (caused by "stress"), but rather by the bacterium H. Pylori. A doctor infected himself, got ulcers, and cured himself with antibiotics!