Millions Missing Edinburgh

My name is Emma, I'm 23 and I've had M.E for 4 years. When I was first diagnosed I was told I was incredibly lucky, there was this great new treatment called cognitive behavioural therapy and graded exercise therapy and that they were proven to help people recover. I happily went along to the psychologist and physiotherapist. I seemed to be getting worse but I was told this was due to de-conditioning so I pushed on.When I began the treatment I was able to walk for about 5 minutes each day, by the end I could barely walk 5 metres. I was told by my physiotherapist and doctors that I had recovered, even though objectively I had worsened. I could not work, study or even live independently. Nowadays, although the PACE trial has been dis-credited, the treatments it suggests are still the only available to M.E patients

There are an estimated 20,000 people with M.E in Scotland. 25% of patients are housebound/bedbound. We don't know what causes M.E  and for almost a decade to  Medical research council  gave applicants £0 to find out. Per patients funding is less than for any other illness. 

Patients are coming together from around the world to demand better. I am one of the organisers of the Millions Missing protest outside the Scottish Parliament on the 12th of May to raise awareness of M.E. patients in Scotland.  I have attached a leaflet with more details. (See image below)

We are focusing on two things. 1. the chronic lack of funds invested in biomedical research and the urgent need to increase funding 2. Education of health care professionals in terms of recognizing the illness (research shows up to 50% of patients who are diagnosed by their GP with M.E don't have it!) and the best treatment for patients.

We are in the midst of writing our demands out more coherently with possible solutions, but we really need patients from around Scotland to send us their pictures, their stories and their shoes to represent them! 

Could you help get the word out? Would you like to participate? If you can't make it can you send a pair of shoes ? The address is on the leaflet image below.

Here is a link to the event:

Best wishes, 

Emma Shorter

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November 2018
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