The death of a young British woman has officially been attributed to M.E. this week and is the second time in Britain an Inquest has recorded M.E. as causing a sufferer’s passing, the first being Sophia Mirza in 2006.
Merryn was 21 and had suffered from severe M.E. since she was 15. In the end she simply couldn’t tolerate food and starvation lead to her tragic death. When I was severely affected I was simply too weak to eat solids. In those days M.E. wasn’t treated in any way and my GP just said to get some Complan from the chemist 😦 I lived off smoothies for a year which in no way provided enough nutrition and, like Merryn, weighed under 6 stones (80lbs/36kilos). When I was hospitalized they sent for the psychiatrist who put in my notes that I was anorexic – I couldn’t get them to understand that I was starving and wanted to eat but my body just wouldn’t take food!
Reading through Merryn’s story it was interesting to see that her M.E. began with hives and swelling following a holiday in Europe. Knowing what I do about mast cells and my own situation I can’t help but wonder if they were involved and of course MCAD can cause awful problems with the gut. It is not, however, going to show up on testing unless you specifically look for mast cell mediators which at the moment requires a person to go to a lab and have fresh samples done, something a severely affected M.E. patient is way too ill to do.
Merryn’s family had the brave forethought to donate her body to the M.E. Association’s Ramsey Research Fund for examination and the pathologist found brain ganglionitis (ie inflammation). This has been found before on the post-mortem of another M.E. sufferer. The pieces of the puzzle are consistently all there if only Doctors were properly looking for them.
My heart goes out to Merryn’s family. I can’t imagine what the years of her illness, or the past 12 months, have been like for them. They have been so strong in donating her body to help other sufferers and I’m just relieved that the Inquest quite rightly put Merryn’s death down to this devastating disease because if she didn’t have it she would still be alive.