Details of the Event
Millions Missing Edinburgh protest is being held from 1200-1400 on Friday 12th May outside the Scottish Parliament to raise awareness of Myalgic Encephalomyelitis (ME – sometimes called Chronic Fatigue Syndrome) and the devastating impact it has on tens of thousands of people in Scotland. Protests are being held in 18 cities in seven different countries worldwide, supported by the charity #MEAction. UK protests are being held in Edinburgh, Birmingham, London, Newcastle, Newry and the Isle of Man.
The protest is called #Millions Missing to symbolise the millions of people with ME who miss out on everyday life and the millions of pounds missing from research into this devastating illness. Most people with ME are too ill to come to a demonstration so they are sending in shoes with a label summarising their story to symbolise their support. The empty pairs of shoes will be displayed at the protest as a striking visual image of the Millions Missing.
In Edinburgh, protestors are demanding that the Scottish Government and NHS Health Scotland provide funding for biomedical research into ME and commit to the education of health professionals about ME.
Notes for Editors
Patients from all over Scotland have come together to organise #Millions Missing.
Stuart Murdoch, lead singer of Belle and Sebastian (who has ME) and Ali Smith, the Scottish author, playwright, academic and journalist, are supporting Millions Missing.
Stuart Murdoch appeals to the Scottish Government and NHS Health Scotland:
“We are ghosts, us ME people. Disregarded, ignored, and at worse, not believed. It doubles the burden. We are sick, but you do not see we are sick. We cluster with each other for help and support, like urban lepers.
All we want is to get better. All we want is to prove that we are worth something. Funding, research, dedicated rehabilitation programmes – these could be the key to the door for so many.
We’re not going away. It really would be cheaper to try to make us better. “
Ali Smith sends this message to the Scottish media:
“ME/CFS is medically underestimated and marginalised, as pretty much everyone who has it or who’s ever had it knows. It’s misunderstood, it needs more research money and attention, in the case of both those who suffer from it and those who work to discover its sources. This is urgent.”
L.A. Cooper who leads #MEAction Network UK states:
“We’re living with a complex, multisystem disease in the 21st century that is being approached with medieval attitudes. The biological evidence is out there and it’s time to acknowledge its presence. Patients are being systematically denied adequate treatment because of poor investment, poor knowledge and poor science. It’s a human rights issue that must be addressed.”
Quotes from MSPs are available and there are a number of case studies of individuals with ME which illustrate the personal experience of suffering from ME.
ME (Myalgic Encephalomyelitis) is not rare, the nature of the disease causes most patients to disappear from everyday life. Over 21,000 people in Scotland have been diagnosed with ME. This represents a greater number of patients than Multiple Sclerosis and Parkinson’s combined (each affect about 10,000 people in Scotland).
ME is a systemic neuro-immune disease. The debilitating and often disabling symptoms of ME are an inability to carry out every day activities due to profound fatigue, sensory sensitivity, cognitive impairments, muscle and joint pain and post exertional malaise, an exacerbation of symptoms following even trivial amounts of physical or cognitive exertion.
- There are no ME specialist hospital consultants in Scotland.
- It is not taught in medical schools.
- There is no effective treatment on the NHS.
- ME can be at least as disabling as multiple sclerosis and congestive heart failure (NICE guidelines). 25% of patients are severely affected: some of the severely affected are bed bound and cannot move or speak. This is why ME is sometimes described as “living death”.
- In 2006 ME was estimated to cost the UK economy £6.4 billion a year – this cost will clearly have increased in the past 11 years.
- A recent survey in Scotland showed that fewer than one in ten people with ME are in full-time paid work, education or training and only a further 24% are in part-time work, education or training.
- There are several drugs that have shown promise in initial clinical trials conducted outside the UK. The Medical Research Council and NHS have not provided any funding for UK Trials.
- A recent report funded by the American National Institute of Health reviewed over 9,000 research papers and stated that ME is a “complex multi-system and often devastating disorder”.
- In a recent survey of Scottish patients, two thirds of people with severe ME had been ill for 10 years or more.
- There is a chronic lack of research funding for ME. A recent report from the charity ME Research UK shows that funding has been “low-level and patchy”. It highlights the need for increased investment in research, particularly in high-quality studies of biological mechanisms and treatments.
- The majority of public funding in the U.K. has been given to explore the psycho-social model of ME/CFS despite this having no theoretical basis and being at odds with the physiological research. ME was classified as a neurological illness in 1969 by the World Health Organisation and is now generally recognised as a neuro-immune illness.
- The only treatments available in the UK continue to be based on the widely debunked PACE Trial. The researchers doctored the data in such a way that Jonathan Edwards, Emeritus Professor of Medicine at University of College London, accused them of showing “disregard for the principles of Science”. The £5 million trial was part funded by the Scottish Chief Scientist Office and, apparently uniquely for a clinical trial, by the Department of Work and Pensions.