Journal of IiME Volume 1 Issue 1 INVEST in ME CAMPAIGNING for ME AWARENESS ME AWARENESS MONTH ME Awareness has traditionally consisted of a week in May – with 12th May being recognized as ME Awareness Day. IiME have been suggesting that only a ME Awareness Month is sufficient to mark the seriousness of this illness, with 12th May being recognized as the focal point of the month. We are happy to join with ME Research UK to promote ME Awareness Month – a chance for people around the world to highlight the issues surrounding ME, to recognize the devotion of many carers and the courage of many sufferers of ME. It will also give more opportunity for serious discussion of research and enable ME to be seen more as a mainstream illness. ME AWARENESS MONTH MAY 2007 HAVE a CUPPA for ME ME as a Notifiable Illness Invest in ME are happy to work with other groups and charities for the benefit of people with ME and to make progress regarding the urgent issues which need to be tackled. Our recent campaign to have ME recognised as a notifiable illness in schools was made from an idea by Jane Colby. Jane is a former head teacher who has ME and who formed Tymes Trust. It is now ten years since Jane and Betty Dowsett made the report on ME. These studies along with those of Dr Nigel Speight have clearly shown that ME-CFS is a major illness responsible for most school absenteeism. Although IiME and other ME support groups are campaigning for ring-fenced funding for biomedical research into ME we also recognize that we need to help raise money via a voluntary donation effort. In late 2005 Invest in ME launched the Have a Cuppa for ME event. A simple idea to hold tea or coffee mornings with friends, relatives and neighbours. Around the country groups have organised HACFME events and raised thousands of pounds which has gone towards biomedical research to charities such as ME Research UK. More details can be found on the IiME site – www.haveacuppaforme.org. Invest in ME Charity Nr 1114035 Our campaign called on the Chief Medical officer to make ME a notifiable illness in schools. With no government funding being directed at biomedical research we need as much data as possible in order to apply necessary diagnostics to this illness. By making ME a notifiable illness it would be possible to collate more exact figures for occurrence and geography of the illness. It would have a further advantage in ensuring that children’s lives are not irreversibly disadvantaged due to lack of awareness. were better understood Health and Education Authorities could better target their limited resources for the benefit of these sick children. More on this may be found at – http://tinyurl.com/ypnv2q www.investinme.org If the demographics Energising ME Awareness 15
16 Publizr Home