[1996]

CFS is nothing new when you're young and get serious viral infections.

When I got the right to vote, I also got EBV. I was stuck in bed for weeks with what the docs initially suspected to be leukemia. It tooks me months to get back to some kind of normal.

Even now I don't think I'm fully back to normal. I get tired much more easily.

[Sevrene]

I had a similar experience with EBV. Although I also think it caused a sleeping disorder as well (Delayed Sleep Phase). Any doctor I've mentioned this to has shrugged it off, I guess there's not much you can do even if they could establish that it was actually the cause.

[1996]

This is scary. I also have DSP since then, but no one ever suggested the 2 could be linked.

Now I wonder how much data we are missing, as doctors also shrugged off my much worse baseline state, saying EBV was innocuous. But as I did a lot of sports, I know very well how it affected me. Another person on this post mentioned of their weightlifiting suffered.

We should get organized to find anything that may help us go back to normal and healthy.

[Sevrene]

Interesting, I think there's more to this than people know, but most doctors I've spoken to don't even know about DSP let alone the seemingly obscure idea that it could be caused by EBV. It's hard, because I really think some amount of validation would be really beneficial to people who suffer from these problems. People have made some pretty insensitive comments about my sleep. Am I just lazy? Is it all in my head? Am I broken? It has an effect over time. I've heard doctors state that CFS doesn't even exist, or that EBV doesn't cause long lasting issues with sleep or fatigue, yet I hear so much about it. For me, the abnormal sleeping schedule isn't really a problem itself but rather it's the social expectations and obligations people and work has that you sleep to their schedule, what they consider normal.

There has to be more research conducted for this (and sleep disorders in general, really) because if there is a link that's the only way forward to managing it through your healthcare provider. At the moment I haven't found many doctors willing to be so speculative which makes sense - they don't know what to test for or how to treat it; so there's nothing they could really do anyway.

Personally I have found modafinil[1] to be extremely helpful in combating sleep and fatigue, one of it's on label uses is for people with narcolepsy so it's possible your doctor might be willing to prescribe it for you off-label. I buy it off the internet which is technically illegal where I live but it's way cheaper.

After your comment I did a really quick search for any information and found this paper[2] from 2018. It has some pretty big limitations, but I think it's worth doing more research.

1. https://en.wikipedia.org/wiki/Modafinil

2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6220045/

[mbo]

This is identical to my partners experience. She got EBV (asymptomatically, only discovered in blood records years after) and has suffered from CFS and Delayed Sleep Phase disorder for almost a decade now. She's recently been prescribed Dexamethasone, which has helped manage her symptoms somewhat.

[Sevrene]

Thanks for the info mbo, I'll look into Dexamethasone. I currently use Modafinil to help manage my excessive sleepiness and it's been really helpful. Doesn't 'fix' it, but definitely helps.