Hi, appreciate this is an old thread but I’ve been googling to find a support network for partners of ME patients. I am based in the UK in my 30s & this thread seems to be the only place I have found anything. If anyone in this thread is still active I would love to hear from you.
Hi @Louise1992 and welcome. I’ve moved your post to a fresh topic soit will be noticed more - the old thread was over 5 years old and often they get revived by spammers…which you are not!
There are local support groups across the UK for people who have ME and their families. You can find out more here: Local Support Groups - The ME Association
You can search by postcode. Different local groups will have different types of support, but hopefully you’ll find some support that way as well as on here.
We’re a very mixed bunch here - most of my experience with ME and similar conditions is from my time working at a carers charity, but my caring experience has been across different conditions. Currently I care for my wife, who had an incomplete spinal cord injury, my oldest son, who has mental health issues, and my youngest, who’s 41 (eek!) and has autism.
Anyway, welcome aboard again - hopefully others will pop by and say hi!
@Louise1992 …welcome to the forum from me too.
Hi
I’m new here too. My daughter is 22 and has complex health and autism, she was under an ME specialist due to her chronic fatigue, but no diagnosis made due to all her other conditions likely causing fatigue. More than happy to chat , chronic fatigue is very debilitating:(
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Hi @Sally_1234 and welcome to you, too!
My experience of ME was mostly with two staff members! Trying to balance their work demands (and they were carers too) and their health was a real challenge! Some of our clients were carers of people with ME or had ME themselves, so we talked to the local support group and their specialist, who gave us lots of advice. This was all pre-covid, by the way. We were able to accommodate most of the advised changes at very little cost to the organisation, and managed to reduce the amount of sickness taken to a bare minimum. When we lost that contract to another provider, they transferred, but the employer didn’t follow the advice we got (although they had chapter and verse on it, plus the staff had their own copies). One left shortly afterwards, the other is hanging on by a thread. So frustrating.
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