Playing Nice With NICE

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From Dizzy Girl Writes.


In view of my last blog post, I have decided to email NICE to talk about my experiences of having ME under the current guidelines and to raise my concerns about their panel. The latest tweets I’ve seen suggest that their panel for the review of guidelines for treating ME is biased in favour of those who view it as having a psychological.

I’m not sure if this will make any difference but at least I’ll know I’ve tried. Thinking of the thousands of people with ME out there who can’t.

This is what I sent :

Dear Professor Baker,

I am writing to raise my concerns about the NICE reviews for Myalgic Encephalomyelitis.
I wanted to write to tell you about how it feels to be a person with ME under the current guidelines.

I have had ME for 23 years. Following a virus almost two years ago my symptoms have become much more difficult to manage. My mobility is limited and I am frequently unable to pick my children up from school. I cannot walk to my local shop alone or carry out even a basic level of housework without being exhausted, and this can take days or even weeks to lessen.


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