This site is dedicated to all sufferers and families of people with

ME/CFS
 
   I have put up this page to encourage understanding and discussion
 

Hi, my name is Mark and my wife is Michelle. We have two children, Hannah (11) and Jack (6).  We live in London, England.  Our life was quite ordinary until my wife got ill.

Here is our (short) story. 

My wife Michelle was diagnosed with ME about three and a half years ago. At first we did not know what ME was or what a change it was going to make to our lives. In the intervening time since the diagnosis, Michelle has had numerous tests, been tried on several drugs and experimented with many complimentary remedies. Michelle has continued throughout to deteriorate, recently at an accelerated rate.  Her diagnosis was for the more unusual "slow onset" variant of the disease. She has been treated by Mr James at the Royal Free Hospital in Hampstead, North West London, and is now at Prof. Pinching's clinic at St. Bartholomews Hospital in the City of London. 

The biggest fear with ME is that of not knowing what will happen next. The base symptoms are well recognised now but the secondary effects are myriad. Michelle has great problems with her nervous system, digestive system, skin, hair, increased allergic reaction, ability to think clearly, memory, hand/eye co-ordination, muscle spasm, twitching; and all this (and much more), on top of absolute (mental and physical) fatigue. One other by-product of this disease is depression. With the situation of continually getting worse, the lack of any surefire treatments and peoples disbelief in the severity of the disease, and the constraints it places upon whole families, (not to mention the suffer), getting the blues is an everyday thing sufferers have to deal with.  Family life is very hard, the children do not really understand, (its not like mummy has a plaster cast). 

There are some very good support groups that offer help, but Michelle is not good at mixing, especially since the onset of the illness.  I take greater comfort and support from other people than she is able to do.  What is needed is a sharp injection of funds for research and better awareness and respect from the public at large.

One group I found that was (and still is) very helpful is Network M E.  They are based in North London, UK, but accept and help people from anywhere. Check them out at: 

www.networkme.org.uk

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