The York ME Community is not a charity. I will not be asking you to put your hands in your pockets for cash. What I believe we need so much more at this moment is awareness of the illness and for that we need people who are learning about ME and therefore able to tell others. There are ME charities, and if in the future you or your friends or business wish to do a charity run or whatever in aid of ME, I will happily help and support that aim.
I have been dealing with having ME since April 2006. Just before that time, I had a normal life. The previous two years had seen me running the London Marathon for charity, and I had run others previously. I enjoyed badminton, archery and running a girl’s football team for Fulford Football Club. This was as well as a great social life and a very busy job. I was also part of one of the local Business Network International (BNI) groups, so let’s just say I was enjoying being normal.
Without boring you with all the in between stuff, I am now unable to work and struggle to walk, even with a stick. My new best friend is my mobility scooter ! My aim now is to try and get out of the house once a week if possible. This leaves me frustrated and angry that I can no longer be part of normal society, and I’m one of the lucky ones. Many with ME are bed-bound, can only feed through tubes, and have little hope of improvement. There are likely to be around 800 to 1,000 people of all ages in the York area with ME, with about 25% of them being severe, meaning house or bed bound. The details behind the illness I’ve included under the FAQ tab at the top of the site if you would like to know more.
THE YORK ME COMMUNITY
This group is for those in the York area, be they sufferers, family or friends, to gain support and friendship, knowing they can interact with like-minded people suffering from the same ailment. A large part of that is feeling lonely, guilty in not being who you once were for your family and friends, and a feeling of desperation that the Government and the medical system give limited support, funds for research, or even belief that this is a real illness. This site is a focal point where we post ME Research Information, stories and articles of interest, as well as local information relevant to our members in the York area.
The site is also a focal point for business supporters of The York ME Community. I emphasis the word Community as those with ME live next door to you, are your co-workers, your family, your friends. We have already had support from The Press, YO1 Radio, YorkMix, York Centre for Voluntary Services (CVS), The Barbican, The Yorkshire Fatigue Clinic, York Healthcare and York Council who have us listed as one of their Family Support Services. A number of businesses have come on board our Inter Company Fantasy Football League sponsored by TGA Mobility. You can read more about this in other areas of this site. I have also been taken on by The Yorkshire Times as a Features Writer to write articles about the ME topics of the day.
The social element of the site has now moved to a Facebook Group where people can meet, chat and support each other. This is open to those in the York area. It won’t be an open group like many which allow members from the UK. We prefer it to be local so that we can lend real support to our members.
There is a Twitter Account at @YorkMEAwareness which I would hope you will follow. Through this you will learn more about ME, and the people in your community with ME. I will also re-tweet messages from businesses who have shown us support to help get those companies a wider audience !
The aim of the Community is to build links with local business, venues, Sports Clubs, local MP’s, Councillors and people of influence. Through this, raising awareness of ME in the area, leading to better support and eventually government funding for the right type of research needed. I am but one voice. The sooner we can bring on board more voices, the sooner a cure might be found for this devastating illness.
How can you help ?
- Would you let me or Sue Pemberton from The Yorkshire Fatigue Clinic come in to speak to you or your staff at your workplace ?
- Are any of your staff doing a sponsored run soon and maybe wondering what charity to run in aid of ?
- Do you know what help to give to any of your staff who may be suffering from ME, or maybe in a phased return to work from an absence ?
- Do you attend Business Breakfast Meetings that might be willing to listen to a short talk on the subject of ME ?
- What about sponsoring our Inter Company Fantasy Football League, or entering a team for next season ?
Finally, I’m open to any and all suggestions that will help in building a partnership between York Businesses and The York ME Community with the aim of raising ME Awareness. If you would like to get in touch, please use the Contact tab at the top of the site.
The information contained in this website is for general information purposes only. The information is provided by The York ME Community and while we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the website or the information, products, services, or related graphics contained on the website for any purpose. Any reliance you place on such information is therefore strictly at your own risk.
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