Are people with ME being let down by the health service?

More than 21,000 Scots struggling daily with the debilitating illness myalgic encephalomyelitis (ME) are being failed by a health service which has so far appointed only one specialist nurse to support their needs. That's the claim during a global week of action.

If that specialist, who works in NHS Fife, was to divide his time among all the people who could benefit from it, he would be able to devote less than a second a week to each one.

At the same time, the amount of money being spent on research into this serious condition, which can rob people of a normal life, is paltry compared with many other illnesses. Only £4 per patient was spent on ME research per year between 2006-2015 in the UK – that’s compared with £80 per patient for research into multiple sclerosis.

These are some of the problems to be highlighted in a global week of action being organised by #MEAction from 5th to 12th May to raise awareness of the plight of people with ME. Events are being organised in Glasgow and other UK cities to highlight the need for health officials and governments to take action.

The speakers at the Glasgow Millions Missing on 12th May will include Stuart Murdoch, lead singer of Belle and Sebastian, Professor Chris Ponting, Edinburgh University and Carol Monaghan, MP for Glasgow West, who organised a debate relating to ME in Westminster in February. Stuart Murdoch will be performing with some band members from Belle and Sebastian.

Stuart Murdoch has had ME for 28 years and is one of the many who would like answers. “Why so little funding, for so many people, in so much pain? Just tell me the reason, and I’ll retract my question. Tell me why we aren’t as deserving as other citizens who have equally debilitating conditions? We just want to know.”

#Millions Missing will see the lining up of ‘empty’ shoes with messages from ME patients from across the UK, footwear that has been unused and made redundant by this debilitating illness. The powerful and symbolic display of how ME is ruining lives for millions of people in the UK and worldwide will be taking place in over 90 cities across the world.

“This is about more than a disease. This is a social justice issue. We are fighting for the research funding and medical education we need to stop this epidemic. We are fighting for our lives,” said Jennifer Brea, co-founder of #MEAction, and director of the award-winning documentary, Unrest.

Myalgic Encephalomyelitis (ME) is a chronic, debilitating, multi-system disease that affects 21,000 people in Scotland and approximately 250,000 men, women and children of all ethnicities, ages, and genders in the UK.

• People with ME have a lower quality of life measurements than any other disease tested

• There are no ME specialist hospital consultants in Scotland and only one specialist nurse

• ME is the main cause of long term sickness absence from schools in Scotland

• Research funding in Scotland is low: currently the Scottish Government provides £15,000 a year

• Some health boards in Scotland continue to recommend Graded Exercise Therapy, a treatment that the majority of patients find harmful