New secretariet for cross party group
M.E. Sufferers Out in the Cold
Social services, welfare and health information
The Green Paper on Social Care Reform - Shaping The Future
Here is the LINK to the Invest in ME Conference that is taking place on the 20th May 2011 in London
News concerning the release of the PACE Trial results and the various news stories and responses concerning this: LINK
Dr Myhill petition
Letter to GMC
Compiled by Professor Malcolm Hooper and Margaret Williams for submission by The 25% ME Group
20th March 2010
Severe ME/CFS: A Guide to Living by Emily Collingridge.
An essential reference book for all people with severe ME and the loved ones and professionals caring for them.
For further information and to buy copies of the book go to www.severeme.info
Tragic Death of Lynn Gilderdale
The 25% ME Group – support group for severe ME sufferers, would like to offer our sincere condolences to all the family of Lynn Gilderdale.
She was an extremely ill person, who suffered many complications due to having Myalgic Encephalomyelitis (ME).
Lynn had been a member of our national charity for many years and in fact volunteered to head up our poster campaign several years ago, which contributed greatly to raising awareness of the illness.
It is a fact of life that many continue to suffer with this devastating disease often in silence and completely alone and isolated. Certain areas of the medical profession have been responsible in the past for belittling the condition, but it is a reality that neurological ME, causes a great deal of pain and suffering for the patient, some of whom die from the disease as was the case with Sophia Mirza a few years ago. We also had a member who died from complications of ME, earlier this year.
I know personally that Lynn wanted to make a difference and to raise awareness of ME and we thank her, for what she did.
Our love, support and prayers will continue for Lynn’s mother, Kay, and all the family at this tragic and deeply sad time.
25% ME GROUP
Lynn Gilderdale was a valued member of the 25% ME Group and we are all heartbroken by her death, especially as we are fully aware of her mother's total devotion to her. We represent ME sufferers who are totally bedridden, some of whom are tube fed and dependent on carers and others who are lucky enough to be able to leave home in a wheelchair occasionally; two other members of our group have recently died with ME on their death certificates.
Despite thousands of medical research papers showing immunological, neurological, endocrine, cardiac and gene expression involvement in ME, it is thought of as an illness of fatigue and even called Chronic Fatigue Syndrome by the media and some doctors. Our members in reality have to deal every day with truly debilitating, frightening and overwhelming symptoms, and they also have to cope with the loss of anything resembling normal life. Lack of knowledge from the medical profession and lack of understanding from a society which has been told for years that ME is merely fatigue can make this awful situation truly intolerable. Lynn's mother made the point that ME is greatly misunderstood and Lynn suffered the stigma as well as bravely fighting such severe illness.
ME sufferers need to have their suffering recognised, and biomedical research funded if more deaths are to be avoided.