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by willemmerson 1019 days ago
So you're saying it's all psychological? If this is true, why are so many with ME/CFS/Long COVID responding so well to LDN? I have had ME/CFS for 25 years and also practised mindfulness and pacing all that time yet it did nothing, but when I took LDN it instantly worked.
3 comments

I think the psychological/physiological duality is false. Think of blushing for instance: embarrassment causes vasodilation. I suspect CFS is at its core some type of autonomic dysfunction. This is why many medications do work: some of my patients have had great response to LDN and I'm glad it's been beneficial for you. As for the mindfulness and pacing...yes not everyone gets benefit. A lot of troubleshooting required - it's difficult to figure out for sure. Good for you for doing that though!
> I think the psychological/physiological duality is false. Think of blushing for instance: embarrassment causes vasodilation.

Right, it's not a duality, the word for what you're describing is "psychosomatic".

My partner suffers from post-Covid issues: can you tell me what you mean by LDN?
Low dose naltrexone.
Thank you! Seems like there are both positive small studies and self-reported anecdata available

https://reddit.com/r/covidlonghaulers/s/2SzkM5ca5K

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9250701/

That "study" doesn't even have a control but, then again, I wouldn't expect much from research around long covid.
Really hard to get proper funding for LDN. It is an already incredibly cheap drug in a minute dose... this treatment is not exciting to anyone except patients and a few passionate researchers.

Lots of studies showing "interesting results, needs more investigation" but high quality studies are very slow to come...

The moment this sort of hypothesis turns up I always crow cite your sources. There's very little academic honesty in the area of psychology, a lot of it being coming up with an idea that sounds about right, finding a minuscule dataset to fit to it and then waving hands around profusely about how it's a breakthrough. Tenuous correlation it is mostly.
Yes it's tough, this area of medicine is historically neglected. That's starting to change though. Here are some interesting sources:

1. Neuroscience of dissociation: Bramson, B., Meijer, S., van Nuland, A., Toni, I., & Roelofs, K. (2023). Anxious individuals shift emotion control from lateral frontal pole to dorsolateral prefrontal cortex. Nature Communications |, 14, 1234567890. https://doi.org/10.1038/s41467-023-40666-3 2. Using psychophysiologic treatment for long covid and back pain: Donnino, M., Bs, P. H., Mehta Ba, S., Silverman Ba, J., Cabrera Ba, M. J., Yamin, J. B., Mph, B., Ma, R. T., Berg, K. M., Phd, R. E., & Grossestreuer, A. v. (n.d.). Title: Psychophysiologic symptom relief therapy (PSRT) for post-acute sequelae of COVID-19: a non-randomized interventional study. https://doi.org/10.1101/2022.10.07.22280732

and

Donnino, M. W., Thompson, G. S., Mehta, S., Paschali, M., Howard, P., Antonsen, S. B., Balaji, L., Bertisch, S. M., Edwards, R., Ngo, L. H., & Grossestreuer, A. v. (2021). Psychophysiologic symptom relief therapy for chronic back pain: a pilot randomized controlled trial. PAIN Reports, 6(3), e959. https://doi.org/10.1097/PR9.0000000000000959

and

Williams, A. C. de C., Fisher, E., Hearn, L., & Eccleston, C. (2020). Psychological therapies for the management of chronic pain (excluding headache) in adults. Cochrane Database of Systematic Reviews, 2020(8). https://doi.org/10.1002/14651858.CD007407.PUB4/MEDIA/CDSR/CD...

as well as a review looking at the connection between early childhood adversity and fibro

Varinen, A., Kosunen, E., Mattila, K., Koskela, T., & Sumanen, M. (2017). The relationship between childhood adversities and fibromyalgia in the general population. Journal of Psychosomatic Research, 99, 137–142. https://doi.org/10.1016/J.JPSYCHORES.2017.06.011

there's a lot out there but year the research is still in it's infancy ...

Thank you - appreciated. I will read these over the next day or so.
All I will say is that this is a very personal subject to many (especially the type of person who visits HN) and so a clear look at the evidence might be difficult on a forum like here.

ME/CFS is probably one of the conditions most difficult to discuss in a dispassionate way.