I'm not averse to a bit of risk in my life. Canoeing down the rapids at Grandtully was at times hair raising, swinging on the branch of a tree (just before my fortieth birthday!) was risky, and now I realise foolish, as I badly injured both elbows, but they were risks worth taking.
So, I'm pondering risk. Someone called Annette has asked a question to the ME Association FB page about why it is taking so long for treatments to become available when trials like the Norwegian Rituximab one are showing such good results; results that seem to me unprecedented in ME history and leave me wishing I was Norwegian so I could volunteer and take part in trials. Annette mentions risks asking why patients can't take their own risks with treatments rather than waiting for trials to be completed.
My understanding of the Rituximab trials can be explained simply as ... The body produces too many B cells in the lymphatic system ... the B cells fight against infections ... if there are too many B cells, the extra ones attack the body when there is no further infection to fight. Rituximab reduces the number of B cells. For a fuller, more scientific and knowledgable explanation see the link below.
I have in my mind a set of scales. The nice old fashions type where you balance solid heavy discs on one side and perhaps ingredients on the other. On one side I weigh the risk of treatment with Rituximab, which I understand also involves steroids and the risk of side effects that these bring; on the other I weigh the risk of continuing as I am. The risk of ... the loss of a thirty year career, loss of self esteem that comes from doing a job I love and am good at, loss of essential mortgage-paying earnings (loss of house, ability to pay bills and feed the family), loss of security, increasingly the loss of control over my own life. More important is the risk of ... missing out on, not the big milestones of my girls' lives but just the mundane everyday business of living, risking sitting on the sidelines as they fast become independent young adults.
I would volunteer in a flash ... not for any treatment, but certainly for a treatment that has reported such good initial outcomes as the Rituximab trial. I understand ME symptoms may be caused by different conditions in different people but like me, many with ME have repeatedly swollen, or if not swollen then painful glands, recurring infections of throat ears, urinary tract, and it makes sense that something is going on with the immune system ... Oh to be Norwegian!
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