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January 2009: ME Free For All: "M.E. Resolutions"
[A version of this letter appeared as Battle to beat 'yuppie flu' in the Bristol Evening Post, 5 January 2009]
Our primary resolution, in 2009, for people affected by M.E. (Myalgic Encephalomyelitis) is to render "Yuppie flu" as extinct as the dodo.
We resolve to make people more aware of this dreadfully disabling illness, not just once a year, on M.E. Awareness Day in May, but on every one of the other 364 days, by properly educating people, who may have had no experience as a sufferer, carer, doctor, friend or neighbour, with the facts as we know them: that it is not mere tiredness; it is certainly not laziness or malingering, in people who were previously healthy and had a good work or school record but is a serious neurological illness with a range of symptoms of varying severity, including permanent muscle pain, cognitive dysfunction and dizziness, which "chronic fatigue" alone does not encompass and we'll show you how it devastates lives, isolates people, fractures relationships, breaks hearts and even takes life itself away from some poor souls. We shall no longer be slighted by ignorance.
We all agree that we need a definitive diagnostic test - perhaps a blood test or a scan - to identify M.E. as a distinct illness and that's our goal. Since there is no public funding to conduct crucial biomedical research, we are resolved to do it ourselves, for nothing but the willing, voluntary labour of those who have some background in research and the assistance of those who may not have any experience but are keen to help. We already have some members in our team, who are skilled in experimental design and statistical analysis but we want more people of all sorts - not only boffins and eggheads - committed to serious biomedical research that is so desperately needed.
In the meantime, we resolve to provide as much support for M.E. sufferers, especially those who are isolated and housebound. You can get in touch with us in every known way: write, e-mail, phone and, now, Skype, which is mushrooming, since we launched our service especially for Christmas. Skype is free to computer broadband users. It's easy to install from www.skype.com but if you can't work it out, contact us and we'll get you started. The basics are free but for less than £20, you can add a web cam and let people see you (unless you're having a bad hair day!) and you can switch it off whenever you want. You can talk about anything you like, including this awful illness, or about any problems, such as benefits, with people who understand because they're in the same boat. If you haven't got much of a voice yourself, or feel out of your depth, with doctors or civil servants and need someone to speak for you, we'll find someone to help you through it. There'll be time for some fun too.
We'll also tell you straight what are the best things, in our experience and in the light of reliable research, to do and whether you should avoid certain treatments and questionable advice, which may do you no good, might even make you worse and will almost certainly make you poorer for no benefit to your health.
These are our resolutions for 2009 and will be for every year until we succeed, on behalf of hundreds of thousands of people in this country and millions throughout the World.
If you can help us in any way - with administration, computer work, the research, advocacy, being a listening ear, making the tea, or anything else we could use - or if you are one of the people who needs the help, get in touch today and make our resolutions become reality.
Dr John H Greensmith
ME Free For All. org