One Small Step

I wrote an email to her expressing my dismay at the lack of any clinical trials involving ME patients in Scotland:

I've had ME for thirty years and have managed to hold on to my job in ... all this time. In the last couple of years my health has worsened. I'm starting back on a phased return next week after six months off sick and am looking at probably having to reduce my hours, pay and family income (3 teenagers and a hubbie happily in remission from .... cancer) in the hope of avoiding having to apply for ill health retirement. I am maddened at the lack of support for biomedical research in the UK. I'm wishing I lived in Norway where a drug for lymphoma (Rituximab) has been showing huge recovery figures for people with ME in research trials. I'd love to see some Scottish government funding or some charitable funding for a Scottish Rituximab trial that perhaps could link in with the Norwegian study.

I'd love to find a haematologist who would be as fascinated as I am about the fact the drug that treats B-cell lymphoma has had such success with ME in Norway with ME patients. Especially, as .. (a close relative) ... has been diagnosed with B-cell lymphoma and my father had B-cell leukaemia. I would just like a chance at a drug that might (and I know it is might) help to turn things around for me before my job and income collapse completely.

I have been pleased to receive a reply saying she has written to the local NHS Trust. Part of her letter:

I sent my best wishes to her and to her brother who I had noted was in the same year as me at our local High School. I'm not sure he'll remember me because at High School I was a mouse. But although my confidence didn't flourish at school it has in the years since then. I'm still not loud, overtly opinionated and certainly not a militant ME activist as some ME sufferers or advocates are said to be ... usually by professionals who should know better!  

All types of people from all types of backgrounds have ME though sometimes professionals try to typecast a particular personality type or emotional makeup, as if it is relevant to the diagnosis. My approach is not to moan loudly like a school child's first attempts at the bagpipes and not to stand on a soapbox proclaiming my discontent, but to do what I can in my own quiet but determined way. Every small step counts in what ever way suits your personality, in your own locality, with whatever level of energy you have. I believe that small steps made in small places will add up to big steps all around the world.