M.E

[shumway]

My sister is suffering with what we think is M.E. She's in a lot of pain and everything else has been ruled out. Is there anything I can send her in a care package that might help?

I have had M.E. for about 8 years. She will need a doctor to actually confirm it.

Unfortunately there is sod all you can do about it. Maybe you could buy her a book so she can read up on it. Try one that isn't too heavy going, I struggle to concentrate if it is a really heavy going book. The key is learning to pace yourself, knowing what your limits are and sticking to them. This is very hard work and it took me years to get it right as I refused to accept I can't go wandering round town for a couple of hours and stuff like that.

I have had CBT (cognative behavioural therapy) which IMHO was a complete waste of time. I also attended something that was run by an Occupational Therapist, which was basically learning all about the condition. As I had had it for years, I didn't learn that much but it was nice to meet other people who were in the same boat and if you are newly diagnosed, then it could be helpful. I think I was referred from my docs. If your sister can get a definate diagnosis, then she can ask the doc what her options are. There are also several websites out there. Bear in mind it is often called Chronic Fatigue Syndrome or M.E./CFS as there are docs who don't like the name M.E. and they were trying to change it. Books are usually titled M.E./CFS.

HTH.

Thanks for the info. It's so hard not knowing what I can do to help.

I had ME/CFS for several years. I didn't live near my family which was a shame as what would have helped me would have been someone coming round and making me food or a cup of tea and keeping me company a little, perhaps putting a casserole in or doing the laundry. Other than perhaps some nice hot chocolate sachets or similar, I can't think of much that I would have actually been well enough to use which might have come in a package from someone.

ME/CFS varies hugely from person to person ime and I know that I was completely incapable of reading and retaining information and going out and meeting people until the very end by which time I was getting better!

I'm sure knowing that you're caring about her and thinking of her helps a little.

My DD had CFS/ME for two years.
She did the Lightning Process (google Phil Parker) and is fully recovered.It is seen as controversial in 'ME world' as it costs money to do but I would absolutely recommend it. It's recovery rate is about 85% and they do treat those who are bedridden.
HTH

I was diagnosed in July 07 with M.E. and have managed to get back to part-time work and a fairly "normal" life through sheer determination to pace myself and looking at my life as a whole. I now have a cleaner diet, keep my stress levels down and have had CBT/Therapy which i found helped immensely.
Best of luck - because there is a lot of contradicatory information out there. Try to find something that feels right for you and you should be on the right track.