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donderdag 20 september 2012

ME is no more 'in the mind' than Multiple Sclerosis.

thank you sooooo much Sonia Poulton

19 September 2012 9:03 PM

ME is no more 'in the mind' than Multiple Sclerosis. When is the world going to get that?

Ever since I first wrote on the subject of Myalgic Encephalomyelitis - or to afford it a more user-friendly title, ME - earlier this year for MailOnline,  I have been overwhelmed by the response from patients and their loved ones.
The over-riding message I have received has been one of gratitude. I can tell you that this is something of an unusual experience for a journalist writing for national newspapers.
These people have Facebook-ed and Tweeted me. I have received calls and e-mails. There have been forums addressing the article and pictures and cards received which outlined a sense of relief for millions of people.
Many of these voices – including some of the greatest scientific, legal and academic minds in the ME world – have echoed a collective sigh to see their illness validated in the media.
The very notion that the media, and the press in particular, can actually serve a positive purpose in society may come as a surprise. But sometimes it does. And my piece, according to the phenomenal response that greeted it, was just one of those times.
Here's why. For decades, people who have suffered the debilitating – and sometimes fatal – condition of ME have been forced into a type of denial.
They have been told that their illness doesn't really exist on the scale that they claim to experience it (due, in part, to it being labelled a 'chronic fatigue syndrome'. A highly controversial description because it creates an image of something substantially less than what ME actually is).
They have been told, repeatedly, to 'pull themselves together' and to 'G.E.T. A G.R.I.P.' (a vile acronym actually used to describe the graded exercise prescribed, wrongly, to ME patients).
In short, it is not enough for people to have to endure serious multi-system issues that can leave them bed-bound for months at a time, but they are also made to feel bad for, well, feeling bad.
What an injustice. 

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