Thursday, November 17, 2016

2016- A year of many deaths in the M.E./CFS and FMS community.

As a person who was diagnosed with FM in 1986 and ME (unofficially in 1976 as the doctor did not want that on my health record- he had friends stricken in the Royal Free outbreak) officially in 1990, who has been active in peer support and advocacy since '86, I have seen much of nothing happen in the medical world to make the lives of those stricken with these two disorders have any hope of better care let alone something as radical as a cure.

What I have seen are:  lies, deceptions, misappropriations of dedicated research money, bad science and research so badly done that any hypothesis could be proven by those selling their pet theories to the world- and making money off of the misery of millions in the mean time. 

I have had 30 years of making friends in support groups- local, regional, online global- and suffered endless heartbreaks at every obituary notice. Most of the deaths have been directly due to medical ignorance, neglect and malpractice. Complications as a direct result of having a medical diagnosis that is treated as a "trash can" for the "I do not know what you have" and "I can do nothing for you" mindset so prevalent in the medical world today.  Some of the dead were my friends, others were  acquaintances, a few have been total strangers who shared in a journey through hell that I also walk and who were friends and acquaintances of my friends and acquaintances- in my life off by two degrees. 

All of us with ME and FM are no more than three degrees away from the folks in the memorial lists. In a two month period between April 27 and June 27 2016 EIGHT obituary notices hit the ME support and advocacy groups of new deaths. The causes and ages varied, and they came from the UK, Canada, the USA and Australia. 

How can we stop the needless suffering, the early and terrible deaths? It is as if there is an X-files kind of conspiracy of silence on a global scale and the silence is deafening!

I have a M.E. CFS Memorial Wall on pintrest. There are over 400 images in memory of those of us who have died, and it is utterly incomplete.

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