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250,000 'invisible' ME sufferers fight for funding at London Missing Millions Protest
I am writing to you from MEAction (http://millionsmissing.meaction.net/) to let you know about M.E. patients silently protesting at the Whitehall offices of the Department of Health demanding increased research funding for the disease reflecting the levels of disability it causes. A recent study found that only 15% of ME patients are able to work, and 25% are confined to their homes by disability. Many patients are too sick to attend the protest and in their place will be hundreds of pairs of their empty shoes. Parallel Millions Missing protests are taking place in cities across the United States and Australia. on Wednesday 25th May 2016 at Department of Health Richmond House, 79 Whitehall, London SW1A 2NS.
Don’t hesitate to get in touch if you want more information - and could you possibly let me know if you plan to use this story. More details below
On Wednesday 25th May 2016, MEAction (http://millionsmissing.meaction.net/) and patients affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) will hold a silent protest at Department of Health Richmond House, 79 Whitehall, London SW1A 2NS.
The demonstration brings to light the medical and political negligence of the approximate 250,000 British citizens living with this common, debilitating neuroimmune condition, and demands significantly increased government research funding, reflecting the severity of disability, and release of the trials data from the controversial publicly funded PACE study.
The patient-turned-activists have launched #MillionsMissing to highlight the millions of pounds missing from research funding into the cause(s) and treatment(s) of ME; the millions of medical professionals who are failing to provide adequate care and support for their patients; the millions of sufferers missing from their educations, their careers, their social lives, their ability to contribute to society; the millions missing from this protest. Hundreds of pairs of empty shoes will be displayed at Richmond House, provided by those who are bedbound and housebound and too sick to attend, a haunting reminder of the invisibility of the disease, its victims, and the lives lost to ME.
“Patients are any age, race, gender and from every walk of life. This condition is wholly indiscriminate. We’re living with a complex, multisystem disease in the 21st century that is being approached with medieval attitudes,” says L.A. Cooper, founder of activist platform, Change For M.E. Change For Us. Contracting ME at the age of 9, Cooper adds, “Last time this level of stigma was faced, it was AIDS. So we’re taking a leaf out of their book and the national and global participation is incredible to witness. We’re not going anywhere.”
The London #MillionsMissing is far from the sole demonstration coordinated by patients. The movement began with plans in Washington DC. where a protest and shoe display will also be held for 25th May. Since then, involvement has been announced in Raleigh, Atlanta, Boston, Dallas, San Francisco, Seattle, Philadelphia, Canada, Melbourne and Belfast.
ME/CFS patients have been neglected and stigmatised for decades without proper government or medical support, leaving many with a shockingly poor quality of life. Now, activists are demanding urgent attention before more lives are permanently devastated by this disease.
Millions Missing protests are also taking place in Washington DC, Belfast, Atlanta, Boston, Dallas, Philadelphia, Raleigh, San Francisco, Seattle and Melbourne
3. Video of a severely ill ME/CFS patient: https://youtu.be/vfZwqLjDR4w
4. Short documentary on ME/CFS in UK patients: https://www.youtube.com/watch?v=z7CE3K6MmfA
ME/CFS stock photography: http://phoenixrising.me/stock-photography
This is what they had to say about RelevantNow:
It was quick and easy to use Relevant Now to let journalists know about our protest demanding increased medical research funding, and we couldn't be happier to receive coverage in the Evening Standard as a result.
- Ollie Cornes, MEAction Network
Distributed by RelevantNow to 192 media. Read online by 337 people including emails, social media and the web.
And this is some of the coverage they received:
A sea of empty shoes filled the pavement in Whitehall today as part of a silent demonstration by sufferers of ME and chronic fatigue syndrome...