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EheAFC8GA5rbyN

3 karma · joined October 3, 2019

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EheAFC8GA5rbyN··on Ask HN: What has been your experience with chronic fatigue syndrome?
I started to get symptoms in 1999, after I'd been on a year out in Uganda. I'd had all the vaccinations quite close together for some reason, and later on I got Malaria quite badly, and I suspect it was one or both of these which initially caused it.

When I went to the family doctor I was treated for depression, but it didn't fix the tiredness. When I suggested I might have M.E (the UK name for CFS), I was told that M.E. doesn't exist and I'm just neurotic! This made it difficult to for instance claim sickness benefit, and for a while I had to be on unemployment benefit as I "wasn't ill enough".

Several years later when it was more well known, I was diagnosed with M.E., but obviously there is no positive diagnosis, it's just diagnosis through exclusion of other possible causes. The symptoms went away after a few years and I had a full time job and normal life. Then I overdid it a bit at work and eventually came down with a viral illness that just didn't clear up...ever.

In the grand scheme of things I'm quite mildly affected. I get tired easily and would struggle to work a full day, but I have generally been able to work part time to support myself. I managed to do a degree in computing science which obviously helped to get well paid work. I was self-employed for a while which was great as I could work when I felt well. Working from home makes things easier as hours are more flexible and there is no commuting which is energy draining.

I have been quite a lot worse the last year or so because of covid vaccinations. I was in bed for about a month after the first one and still haven't returned to baseline. There is a facebook group full of people with a similar experience and supposedly 10% of people with M.E. are affected long term from the vaccinations. I tried to get an appointment with a specialist to talk about these changes and it's taken 2 years just to get one, which is in a few months time. And this is in the UK, a supposedly developed country. I have found it quite frustrating seeing various people with long-covid getting lots of support instantly, while people with M.E. are left to rot in the gutter even though they are both basically post-viral illnesses and pretty much the same thing. But I'm not bitter!

I have tried antidepressants, therapy, accupuncture, chinese medicine, meditation, "reverse therapy", gluten/dairy free diet, vitamins. I spent a lot of money on some of these and none of it worked, even slightly. Various people such as Dr. Sarah Myhill suggest a keto diet and it's something I might try. There was quite a good podcast recently called "The M.E. Show" and she was on one of the episodes: https://meassociation.podbean.com/e/episode-six-dr-sarah-myh....