Myalgic Encephalomyelitis Community
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Advice to pass on to a newbie please!!

Hi everyone.

I've had m.e for 20 years. (Since I was 17) I was very poorly, bed ridden then house bound for a few years. I slowly improved over time and started to get my life back a little. Now I have two kids and work 8 hrs a week and manage symptoms ok. It been a long road, but I'm so used to this life style that I don't even think about it much.

Anyway, I have a friend that has just been diagnosed and has come to me for support and advice. Emotional support I can do, but feel I'm totally out of touch with what help is available and what the latest medical opinions are. There wasnt much when I was diagnosed.

Just wondered if anyone can give me any advice that I can pass on to her? She is very interested in alternate therapies. She is a single mum with a young son and is able to work part time but the diagnosis has

really knocked her for six. I really want to help her but feel a bit useless. Thanks xxxx

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Hi it's good to hear a positive story and you have managed to get a balance in your life.

I find reading everything I can get my hand on helps, the local library came up with some resources, and a young woman that I know through a support group. Recommends Doctor Myhill's book.

The cfs clinic I went to suggested CBT and I self referred to access some sessions, it's trial and error. Also there is something called ACT which I haven't managed to track down here. (Acceptance and Commitment Therapy).

It takes a life time to navigate the beast don't you think.

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Hi Purplegail,

I suggest you and your friend look at the Action for ME website and the ME Association website. Both have info on how to manage ME and how to pace yourself so as not to crash (so often!) and how to manage flare-ups. Also the latest research findings are on the ME Assoc site. The latest and most promising show that we have an inflammatory auto-immune disease that can be detected by markers in the blood.

All the best :-) x

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Thank you both for your replies.

I recently read about the inflammatory autoimmune thing which interested me as i also have inflammatory arthritis and suspected endometriosis which are both autoimmune too. From the little research I've done there seem to be quite a few people who seem to have m.e and either one or both of these conditions.

I'm seeing my friend tomorrow. She was supposed to be having a birthday BBQ but is feeling too ill, bless her. I'll pass on your recommendations and hopefully make her feel a little more positive! 😀

Xx

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