From the 25% ME Group
ME patient mourned: more needs to be understood about the sufferings of patients with ME
Sir, Lynn Gilderdale was a valued member of the 25% ME Group and we are all heartbroken by her death (report, Dec 9), 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 that Lynn suffered from 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.
25% ME Group