The Current Situation (2019)

  • 250,000+ M.E./C.F.S. patients in the UK (Unreliable statistics due to misdiagnosis and a lack of research)
  • 17-30 million M.E./C.F.S. patients worldwide. The Open Medical Foundation estimate that 91% of people affected by the condition are not yet diagnosed.
  • Patients with ‘mild severity’ have the potential to remain in work but many are having to leave employment due to a lack of suitable working practices. These same people are struggling to prove eligibility for any kind of disability allowance and are finding themselves in dire financial situations.
  • There is an unhelpful lack of flexibility in terms of working practices;
  • There is a substantial level of stigma and disbelief surrounding the condition;
  • Students are dropping out of school, college or university because educational professionals do not know how to support within existing disability frameworks;
  • There is a lack of awareness, it is not ‘just tiredness’;
  • The M.E./C.F.S community is a large economic burden.

Why does the M.E./C.F.S. Community need help?

  • It’s an ‘invisible’ condition and is surrounded by stigma;
  • Lack of support from outside the circle of immediate family and close friends;
  • Feeling of being ‘left’, no treatment or support;
  • Worrying suicide rate;
  • Increased knowledge and awareness= Increased research funding;
  • Financial difficulty – Keep M.E./C.F.S. patients in work where possible;
  • We need the wider community to fight alongside us to tackle the global M.E./C.F.S. health crisis.

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