ME is a neurological condition recognised as such by World Health Organisation since 1969. It affects people of all ages and all walks of life and there are up to an estimated 300,000 sufferers in UK alone.
ME has become a political maze difficult to understand,in which government research funding is seldom directed into biomedical research but mostly the psychosocial arena. I wonder why? Where there is a pot of money...there often seems to be greed, unfortunately and often no transparency. I was interviewed more than a year ago regarding ME asked what services we would like etc. I heard nothing about the conclusion of this. No feedback...no idea what that exercise was for! No doubt funding was allocated and paid for this project. I hope patients' voices will be listened to but more importantly that something concrete and practical done.
It is time for recognition of ME with a decent programme of care, with an approach as indicated in the Canadian Guidelines. There are many independent charities campaigning for biomedical research. “Invest in ME,” for example holds informative and scientific conferences in London every year, with worldwide attendance. They are also founding members of The European ME Alliance. However, the Medical Research Council and our government does not seem much interested in engaging in dialogue or attending/taking the conferences seriously, in spite of growing scientific evidence including sub-groups in ME and possibilities of treatment. Response by Prime Minister, one of hidden indifference. Is it any wonder the ME community is angry and skeptical at times?
“Invest in ME” has an excellent website for more information including access to a PDF version of the Canadian Guidelines at www.investinme.org
DISCLAIMER: The views expressed in this exhibition are personal and I do not claim to represent any other person, charity or group. I am aware that I have mentioned “Invest in ME”. This is only out of my respect for the work they have done and are doing as a patient charity, and the fact that the “Canadian Guidelines” seems to be a logical, scientific and practical approach in the treatment of ME.
Apolonia J. Lobo