Protests Across the UK Highlight the Lack of Support for Patients Suffering from Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

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MEDIA ADVISORY FOR:  Tuesday, 27 September, 2016
TUESDAY: Protests Across the UK Highlight the Lack of Support for Patients Suffering from Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Thousands Worldwide Take Part In International Day of Action Urging Government Officials to Ramp Up Funding for ME/CFS Research, Clinical Trials and Education
On Tuesday, September 27th, hundreds of people in the UK and around the world will rally to raise awareness of myalgic encephalomyelitis / chronic fatigue syndrome, demand social justice for ME/CFS patients and call for increased funding for research and medical education into the disease.  
At the demonstration, activists will display rows of empty shoes which represent some of the millions of people worldwide who are missing from their careers, schools, social lives and families due to the debilitating symptoms of M.E. – unable to participate in this protest or their former lives.
Members of, an international network of patients empowering each other to fight for health equality for Myalgic Encephalomyelitis, will hold events in Belfast, Bristol, Cardiff, Nottingham, Oxford and London in an effort to bring attention to the #MillionsMissing around the world who suffer from the disease with little hope for improvement.
The events will take place in 24 cities around the world, with rallies in 6 cities in the UK, and 11 cities in the US as well as events in Europe, Australia, Canada and South Africa.
In London:

  • WHERE: The Department of Health, Whitehall, London
  • WHEN: Tuesday, 27th September. 12pm to 2pm LOCAL TIME

In Bristol:

  • WHERE: College Green, Bristol
  • WHEN: Tuesday, 27th September. 9am to 7pm LOCAL TIME

In Oxford

  • WHERE: Radcliffe Camera, Oxford

In Nottingham:

  • WHERE: Speaker’s Corner, Nottingham
  • WHEN: Tuesday, 27th September. 12pm to 4pm LOCAL TIME

In Cardiff:

  • WHERE: National Assembly for Wales, Cardiff
  • WHEN: Tuesday, 27th September. 12pm to 2pm LOCAL TIME

In Belfast:

  • WHERE: Northern Ireland Assembly, Belfast
  • WHEN: Tuesday, 27th September. 3pm to 5pm LOCAL TIME

Myalgic Encephalomyelitis (ME), or Chronic Fatigue Syndrome (CFS), is a systemic neuroimmune disease characterized by post-exertional malaise (a severe worsening of symptoms after even minimal exertion). It causes dysregulation of both the immune system and the nervous system. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound and an estimated 75% unable to work.
The #MillionsMissing movement has emerged as patients are outraged over the continued lack of research funding and the absence of medical education – currently there is little and/or outdated training for ME in medical schools. Researchers have estimated that 250,000 people in the UK have M.E. – 2 – 3 times the number who suffer with Multiple Sclerosis. This includes an approximate 25,000 children in the UK, leaving M.E. named as the leading cause for long-term school absence. There are an approximate 20 million people worldwide living with the little understood illness –  yet as the US National Academy of Medicine noted in its report, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness,” there has been “remarkably little research funding” to date to discover its cause or possible treatments. The limited research funding, when awarded, is almost exclusively granted to the same small group of researchers who favour and promote a behavioural model for the disease, with virtually no biological research taking place. The most expensive example is the so called “PACE trial” which was the largest ever study into M.E, but which has received global criticism from academics, as well as patients, for poor research practices, misleading claims of efficacy and a lack of transparency of the data on which claims are based. Many patients report being harmed by these same treatments which have been used in clinical practice across the UK.
“We’re living with a complex, multisystem disease in the 21st century that is being approached with medieval attitudes,” says L.A. Cooper, who’s leading #MEAction Network UK, “the biological evidence is out there and it’s time to acknowledge its presence. Patients are being systematically rejected adequate treatment based on poor investment, poor knowledge and poor science. It’s a human rights issue that must be addressed.”
“For too long, people living with ME have been missing from their lives – from their careers, their family and friends, their daily routines – but that time is over,” explained Jen Brea, co-founder of #MEAction, “we need real investments in research to guarantee that people who suffer from this disease will no longer be relegated to the shadows.”

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