Killed by M.E.

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.

 

 

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2 thoughts on “Killed by M.E.

  1. Jan Groh

    I’m so sorry for your and the community’s loss, it’s one thing to missing while stuck in bed. And quite another to have gone to your final rest so prematurely. But I am heartened to see awareness ever so slowly finally spreading on social media since Jen Brea’s great film came out. Of course, much too little too late for Merryn, but your blog and others will keep her memory alive.

    Maybe in our lifetime though, they’ll finally give it proper attention… maybe. I do think mast cells have something to do with it all somehow. Even beyond what I’ve already written and shared on other posts. But something causes this brain involvement no one can seem to figure out yet.

    Toes crossed, but not holding my breath.

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  2. Karen, The Walking Allergy

    OMG. another one who got sick in the fall of 2011. What the hell is going on!? I know you don’t seem to fit the calendar, but this is getting weirder and weirder. Just last week I met a new friend who had flares of ‘whatever is going on’ (read mild MCAS almost certainly), I guessed they’d been in 2011 and 2015, correctly. The look on someone’s face when I guess when they got sick(er) is indescribable. When you do it to a clinic nurse, then she witnesses it done again to a patient several weeks later… even better!

    My heart aches for this young woman and her family. The current physician ethos of ‘If I don’t have a double blind controlled study to back me up, it’s better to do nothing’ is SO pervasive. The reluctance to use anecdotal evidence and/or logic is stunning. It takes at least a decade from beginning of approaching a topic to get to ‘accepted treatment’, we don’t have the luxury of time, here, our lives are wasting away. Unnecessarily.

    Liked by 1 person

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