For people on the road to recovery from CFS/ME

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View Article  Want to have your say about Chronic Fatigue Syndrome / M.E?
I have had CFS for 4 years and have worked hard to get better. Now I am improving I wish to pass on information about the strategies that I have used as I found very little available and have been asked to write a book for friends and families of sufferers that will help to explain the condition and suggest ways people can help their loved ones. It is for part of a series of books covering a variety of illnesses including cancer, depression and diabetes and will be on sale in major shops so will hopefully reach a lot of people.

I want to include a wide spectrum of experiences and produce something that is useful to anyone with CFS/ME so I am asking if anyone wants to contribute and have their say.   More information and details of how to contribute are below.

Sincerely,
Elizabeth Turp

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Want to have your say about Chronic Fatigue Syndrome / M.E?

I am doing some research into what the friends and families of people with M.E. can do to help them. This will form part of a book being published by Manchester University Press to be sold in major shops, and has the aim of improving the quality of life of both sufferers and their loved ones. I have the condition myself and am now making a good recovery, and want to pass on the information I have learned.

As you will know, there are not many books available about M.E, and it is difficult to explain to others how it feels. The book will describe the physical, emotional and practical effects, and offer tips on what friends and family can do.  As this is different for everyone I am hoping to gather a range of opinions and ideas so that readers can pick what fits their situation best.

If you would like to contribute your experience and expertise, please write as little or as much as what you wish about what you would like people to do (or would have liked them to do at different points in your illness) via email at: lizahturp@hotmail.co.uk.

Please include your name, age and severity of illness if you wish to.

Some of the areas the book will cover are: physical symptoms; emotional effects; social; financial; work; domestic; family; community; mobility; leisure; other medical conditions; lifestyle; relationships; treatment / management; self-help; sleep problems; pacing; nutrition; relaxation.
 
Thanking you in anticipation,
Elizabeth Turp.
View Article  Members can now post messages direct to the website!

If you are a member of the network and you have created a reader account on this website, you can now post messages direct to the site. All you have to do is let me know when you have created an account (via network@wellies.me.uk), and then I will set your access permissions so that you can post.

Sorry this hasn't been available sooner... the admin panel is a bit complicated, and it's taken me a little while to work out how to configure the access settings properly. Also I was a bit worried about moderating the site (to make sure the content remains "appropriate") ... but now I've had more experience of running discussion groups at work, I don't think this is likely to be a big issue with a group of this size.

For people who had already registered on the site:  I have already upgraded your access permissions, so you can start posting straightaway.   All you have to do is log in, and then there is a "post new entry" link at the top right of the page.   But if you find it too complicated, let me know and I'll put some instructions together.

Would anyone like me to add a chat page, so that people can post more frivolous stuff and have on-line conversations?

In the unlikely event that you see any posts you think may cause concern or offence, please contact me as soon as possible (network@wellies.me.uk).   And if the technology defeats you, don't worry - just e-mail me as usual and I'll post it for you.   And it's worth bearing in mind that posts which are sent round by e-mail will generally get more responses.

All the best
Anne-Marie