250,000+ M.E./C.F.S. patients in the UK (unreliable statistics due to misdiagnosis and a lack of research). Please note this official 250,000 statistic is at least 15 years out of date.
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;
The NICE guideline 2021 was supposed to be a step in the right direction in terms of appropriate care and treatment in the UK. However, there is minimal adherence within the NHS.
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.
