Establish a Select Committee to investigate adequacy of provision for ME sufferers

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Myalgic Encephalomyelitis (M.E.) is a long-term, debilitating, multi-system disease which affects an estimated 300 men, women and children in the Isle of Man, 250,000 people in the UK, and around 15-30 million people worldwide. The economic cost of M.E. in the UK is at least £3.3 billion per year.

Average quality of life is lowest among all diseases tested. 75-85% of patients are not able to work and 25% are bedbound or housebound and unable to properly care for themselves or even wash properly, sometimes for many years at a time. Severe patients have extreme sensory sensitivity and may need to be tube fed. Recovery is rare, estimated at just 5%, leaving many patients sick and disabled for the rest of their lives.

From 2006-2015 M.E. had £4 per patient per year spent on research funding, a small percentage of which had a biomedical focus. In comparison, MS patients had £80 per patient per year. M.E. is twice as common as MS.

Graded Exercise Therapy (GET) is harming people with M.E. Cognitive Behavioural Therapy (CBT) is ineffective.

GPs receive little to no training about M.E. Current continuing professional development courses are outdated and inaccurate.

M.E. is the leading cause of long-term school sickness absence in the UK. 1 in 5 families of children with M.E. are subjected to unjustified child protection proceedings.

The 2014, the M.E. Time to deliver survey report found that:
• 96% of respondents with severe M.E. said they had stopped or reduced household tasks
• 95% had stopped or reduced social contact
• 74% require full or part-time care
• 70% were no longer able to leave their home independently
• 67% said a better informed GP would make a real difference to their healthcare and that they wanted more effective medication (67%), home visits (63%) and joined up health and social care (53%).

In March 2019, The Rt Hon Amber Rudd MP, the UK Work and Pensions Secretary, announced that they have stopped requiring the reassessment of those with the most severe conditions. Those whose needs are unlikely to decrease now receive an ongoing award – with only a light touch review a decade later. The Isle of Man should move from the current system of a very detailed and stressful 3 year reapplication process to acknowledge people with the greatest health difficulties and treat them in a way that respects our circumstances.

The local M.E. patient self-support group, ME Support Isle of Man (est. 1988), continues to campaign actively for a commissioned M.E. service that can educate and reduce harm and suffering but ignorance, stigma and neglect continue to be heaped upon a group of very vulnerable patients already suffering greatly.

It is the severe nature of the illness that makes it practically impossible for people with M.E. to make themselves heard and grasp the help they need. It is only because of the love and support of my family that my words can reach you today. I pray that you hear them.

Tynwald, the Isle of Man parliament, should establish a Select Committee to investigate and report on the adequacy of diagnosis, treatment and provision for ME sufferers.