How long will ME last?

[accidentall]

Ds had a diagnosis of post viral fatigue after having back to back illnesses aged 9 : scarlet fever, norovirus, slapped cheek and then Epstein Barr. He’s 12 now and the diagnosis is now ME.

since 9 his school attendance has been consistently low due to the exhaustion. Is this ever going to get better ? It’s been around 85% for years we can’t get above it . Or will this be as good as it gets he’s permanently exhausted. Goes to bed extremely early, sleeps most of the weekend , can’t do any homework.

He’s seen by an OT, a counsellor and has yearly bloods and a check up. It feels like management not treatment .

We have him on lots of supplements as advised by a nutritionist but so far no improvement (been on them 3 years)

Tymes Trust

I'm sorry to hear about your son - my friend had ME for about 5 years and then improved over the next 5 or so to near normal.

8 years for me, although later in life.

I did have a friend at school who was off for months at a time with it. Not sure how long it took for her but when I reconnected with her approx. 15 years later she had made a full recovery and was living a really happy life in Australia. I'd just had the diagnosis, so that gave me hope.

I think there’s more chance of recovery the younger you are at onset. Esther Rantzen’s daughter was very badly affected by ME, had to use a wheelchair for some time. I think they had success with the lightning programme but you might find more info online. https://en.wikipedia.org/wiki/TheLightningProcess

I’ve found Dr Sarah Myhill useful https://www.drmyhill.co.uk

I’ve got fibromyalgia and CFS and always say I could cope with one if I didn’t have the other. Given a choice I’d go with with fibro as I can do lots for pain, finding things that help CFS isn’t easy. I was in my 50s when it all kicked in and I think it’s path is very different when you’re older at onset.

I hope you can find something that helps your son.

My son had back to back viruses earlier this year that triggered the dormant Epstein-Barr Virus to reactivate itself in his body, and in turn caused Vasculitis. He tested negative for Glandular Fever though. He has struggled massively with the tiredness. He's back in school full-time and homework is being introduced slowly. From what I understand ME/CFS is very individual and there is no 'one size fits all' box for the recovery. A friend of mine from college had ME, and it lasted around 5 years. I don't believe there is a cure, it's just a case of managing it. Sending you a hug, I know how hard EBV is, let alone ME.