May 12th 2003 the ME Awareness Day Demonstration.

The weather was against us, somewhat heavy drizzle with occasional downpours. After finding a parking meter, by the time I made the short walk to the demo I could hardly hold my umbrella, the rain was penetrating my envelope of Kickbacks and what with my arms starting to tremble (an ME symptom) and my brain was becoming foggy. I completely forgot to hand Trevor the petitions I had previously got people to sign. Talking to others became weird, rather like having your arms tied to your waist. I had my camera but needed a third arm to take a picture, all the time trying to avoid getting my paperwork camera etc wet. I'd even printed a few A4 sheets with 'ME West London' for our members to show whom we were. Unfortunately they never saw the light of day. George L had travelled with me, and it was also nice to meet Hattie there (We have spoken many times but never actually met before). I spoke to Paul Davis (RiME) and was introduced to Simon Laurence (25% Group) and Trevor Wainwright (Came) who had organised the event.

I was introduced to others, names I can't remember and also Sheila Barry. I was showing her one of our Kickbacks with which she showed interest. She had travelled down from York, coincidently our Dad's were in partnership together for many years (painter and decorator firm). The reason Sheila was at the demonstration was that her Daughter Carli had suffered with ME and in 2001 had committed suicide. I've included an article from Sheila about Carli tragic death and a poem Carli wrote. It's all so very sad that someone so young should end their life. And it shows how desperate sufferers of ME can become.

2.3.03 From Sheila Barry    

This is a subject that many people prefer not to mention.  However, in Afme’s ‘Severely neglected ME in the UK’, published in March 2001, 50.3% replied ‘yes’ to the question "Have you ever felt suicidal; as a result of your illness?"

Some of you may be aware that my daughter Carli chose to end her life on her 27th birthday, two years ago. Her body was found nine days later, 250 yards from her home.  There are numerous reasons why the inquest has been delayed but I have just been informed that it is to take place ‘very soon’.

I am hoping at that time to raise awareness of the devastating effects of this cruel illness

It would help if I had more accurate information as to the number of UK ME sufferers who have chosen to end their life – at present I do know that she was the third ME sufferer in this area who chose to end their life in this so sad way.  Other people have contacted me since her death.

I would like to begin to compile a register. I would therefore ask you all to let  me know:

  • The names (and home town) and brief details of anyone who you know who has taken this action (No name will be made public but it is necessary to ensure that there is no duplication)

    If you, or anyone you know, has felt suicidal as a result of this illness, could you let me know the main reason that led you to feel that way, be it pain isolation, helplessness, benefit issues or the grief that is associated with the many losses sufferers feel as a result of this illness and so many more 

  • If Carli's death can in some way help to make aware to the members of the general public, who have little knowledge of the subject, just what it is like to suffer this illness,  I will not feel that she has died in vain and that her death has in some small way ‘made a difference’

    Please help me to set up this register.  So far there have  been no figures compiled  to indicate how many sufferers have died by their own choice.  You may prefer to contact me  direct.  I was going to leave this till after the inquest but have come to see that it would be better to try to get the information beforehand.

    Please help 

    Sheila Barry           Please post on to any other groups who may be able to contribute