The York ME Community
The York ME Community is a patient group in York, UK.
Aims[edit | edit source]
Bill Clayton describes the group's aims:
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, Minster FM, Vale 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.
Funding[edit | edit source]
Bill Clayton describes the group funding:
"Currently we are self funding. I do not expect members to pay anything towards the upkeep of our site. ME has robbed us of many things including income, and I would not expect members to pay for support and use of this Community.
Any work carried out in raising awareness will hopefully be sponsored by businesses who will in turn be able to link to our site and gain local recognition through media outlets such as radio, press and social media.
Other funding channels are being investigated."
Notable people[edit | edit source]
History[edit | edit source]
The York ME Community was launched in September 2015.
Online presence[edit | edit source]
See also[edit | edit source]
References[edit | edit source]
myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.