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Comment by alexfromapex | Hacker News Reader

My money is on Epstein Barr causing it. Even acutely, many are faced with intense fatigue.

That’s my guess. Got EBV back in 2015, and spent about a year with debilitating photophobia, visibly bulging lymph nodes, along with a host of symptoms that still haven’t gone away: excruciating joint pain, muscle weakness, headache and brain fog, anhedonia, annihilated sex drive, etc.

Trying to manage my symptoms, I got a hormone panel to compare pre-EBV. Testosterone and Estradiol dropped by about 65%, where it remained for 3 years until I convinced a doctor to take that delta seriously.

I’m better on TRT now, but I’d say I’m at about a solid 65% of my former self. Joint and muscle pain is gone, but I don’t have the same drive and still struggle with anhedonia. Would love to try a cocktail of things — almost anything really — to feel more alive, but I don’t want to do antidepressants, and I don’t want to be branded “drug seeking”, so I just try to get by for now.

If you haven't already, you could look into trying daily Valacyclovir. Epstein-Barr is one of the HHVs, and may be helped by that drug.

If so, since 90% of people have it [1], avoid it is futile (a bit like avoiding COVID). So the question is how to avoid it causing CFS, or how to get the body out of the CFS state.

[1] https://www.ncbi.nlm.nih.gov/books/NBK559285/#:~:text=Epstei.....

> If so, since 90% of people have it [1], avoid it is futile (a bit like avoiding COVID)

It's not futile. Install proper HEPA air filters in trains and other public transit, provide actual ventilation in public buildings, mandate antiseptic (e.g. part copper) door handles, and especially: provide actual sick leave at work and mandate employers to send sick employees home (and while we're at it, the same for kindergartens and schools)... that would drastically cut down on all kinds of infectious diseases without forcing anyone to wear masks.

EBS is called the kissing disease for a reason

I hope that mRNA technology will soon present a viable EBV vaccine candidate. EBV is implicated in a lot of immune-system-related diseases, but it's so incredibly infectious that it's impossible to get rid of.

Unlacquered brass handles for all public spaces

There's nearly incontrovertible evidence that EBV causes the great majority of multiple sclerosis cases, so it would track.

There are lots of articles and probably studies that seem to find it a lot. I agree it's pretty likely it's causing some of it at least. Someone in my family has cfs, unrelated to covid afawct, but no one has figured out any cause.

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