Severe ME Understanding & Remembrance Day We were recently asked to consider a proposal for introducing a specific awareness day to highlight the seriousness of severe ME to the media and general public. We are very pleased to support and host this initiative. It will be called: ‘UNDERSTANDING & REMEMBRANCE DAY For SEVERE MYALGIC ENCEPHALOMYELITIS’ and will be held on the 8th August of each year. A good deal of information has been put together for our members about this. There is an article in this newsletter (see page 8), and a promotional leaflet and press release are enclosed separately. Other material is available on our website. We hope that Understanding and Remembrance Day will raise greater awareness and promote the disease as something that needs to be taken more seriously, especially with health professionals, research funders and obviously the general public. I am sure that you will agree that the severely affected still have problems getting proper recognition for the seriousness of their suffering and difficulties each day and we will be highlighting this, as well as those who have lost their fight to this disease, as in the case of Sophia, Emily and others. We hope that you will all find the information and the launch of this day for the severely affected as something that will help to raise positive awareness for ME sufferers. New Understanding & Remembrance Day UNDERSTANDING & REMEMBERANCE DAY for SEVERE MYALGIC ENCEPHALOMYELITIS 8th August When we were contacted by Diane Fletcher - mother of very severely affected member, Ophelia Roberts - regarding the idea for the above, I was extremely pleased. (You can read an extract of Diane’s proposal below.) I immediately put forward this proposal to the Management Committee, who readily agreed. The 8th of August will now be marked as an Understanding and Remembrance Day for the Severely Affected. We will continue to take part in the general ME Awareness Week which is held May. We simply feel that it is important and necessary to highlight and raise awareness of the most severely affected ME patients – to understand their plight and remember those who have lost their fight to this illness. Along with your newsletter, you will find enclosures relative to this new Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis. There is a Press Release, and a fold over Leaflet. We hope that you will be able to use these to help ensure maximum impact for this initiative. Further copies are available from our website, or from the office (closed last week in July). The leaflet complements our existing A5 leaflet A PATIENT’S PERSPECTIVE Information Leaflet for Professionals Caring for People with Severe M.E. copies of which are still available. Other information produced for this day, including members’ stories, and an Understanding and Remembrance Information Document, can be found on the 25% ME Group website at: tinyurl/oasltvy
Posted on: Mon, 15 Jul 2013 08:55:54 +0000
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