disenchanted forest

disenchanted

Sometimes it feels as if my very determined cat has as much chance of getting to the bottom of MS as the current crop of researchers.

What does Russell Brand (famous in the UK for being a non-voter, comedian, actor, past drug user and ex husband of Katy Perry) have to do with the current state of MS research?

Much more than my cat, it turns out.

A number of us with this particular chronic disease are disenchanted by what the medical establishment are offering us.

We may not be debating such lofty subjects as the future of democracy but the stranglehold the MS establishment (neurologists) have over our care is every bit as important in our lives.

A number of us have chosen not to participate in auto-immune theories (and treatments developed from them) and as such we could be considered to be disenfranchised.

disenfranchise
ˌdɪsɪnˈfran(t)ʃʌɪz,ˌdɪsɛn-/
verb
past tense: disenfranchised; past participle: disenfranchised
  1. deprive (someone) of the right to vote.
    “the law disenfranchised some 3,000 voters on the basis of a residence qualification”
    deprive (someone) of a right or privilege.
    “we strongly oppose any measure which would disenfranchise people from access to legal advice”

We, as owners of an as yet impossible to cure disease have been deprived of the right to a second opinion in the research field. MS is many things to many people. Prof, Giovannoni has been receptive as have many others, to the idea that MS is multifactorial meaning it has a number of possible causes including exposure to the Epstein Barr virus, lack of appropriate sun exposure/vitamin D deficiency whilst our bodies develop, a trauma to the head prior to symptom appearance and exposure to emotional trauma to name just a few likely suspects.

So, we believe there isn’t just one story to explore in the process of finding a cure and would rather not be given chemotherapy drugs before the experts entirely know what they’re dealing with

I can’t speak for anyone else but I’ve become pretty disenchanted with the status quo. I have reached a similar conclusion to Russell Brand – it’s best not to hold one’s breath while expecting change.

Another piece of news caught my eye this morning which is sort of related Sir Nicholas Winton. Here is a man who coudn’t stand by and let things carry on as they seemed to be destined to. I’m not comparing a contemporary cenlebrity’s actions to those of a one hundred and five year old’s action on the eve of the 2nd WW but the fact I can mention them in the same paragraph only serves to highlight how few folk there are who are willing to put their heads above the parapet.

 

 

Author: deezll

I have spent half my life with a chronic disease and have spent a fair amount of that time addressing some of the common symptoms that a long term condition can bring. Living well is a smart choice and we all know it makes sense.

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