Over 250,000 people are known to live with Myalgic Encephalomyelitis (M.E.) in the UK and, according to recent studies, the true number could be far higher. Many people will know a friend or family member affected by the condition.
As Chair of the All-Party Parliamentary Group (APPG) on M.E., I was pleased to see the government finally release its interim ‘delivery plan on M.E./CFS’, and launch a public consultation on its contents. There can be no further delay in the implementation of this plan. The government must now move with haste to address the inequalities experienced by those living with M.E.
M.E. is reported to conservatively cost the economy £3.3 billion per annum. Those affected by this disease face a daily battle against severe, persistent exhaustion that does not improve with rest, cognitive dysfunction, pain, and a host of other debilitating symptoms. Severe cases leave people bed-bound and unable to function as the illness takes over their entire lives. One in four are house, and often, bedbound for years, even decades. Little is known about the cause of this disease and, as a result, there is an unfair and widespread stigma attached to it.
Many people with M.E. have long experienced second-rate treatment by some healthcare professionals who maintain the disease is blown out of proportion and that people must engage in rigorous physical activity to overcome their symptoms
We must work to dispel the myths and misconceptions surrounding M.E. All too often, those suffering from this illness face scepticism and doubt, with their experiences dismissed or invalidated. This unfortunately translates into inadequate health policy.
A recent FOI report by patient-support charity Action for M.E found that in England, fewer than one in four NHS Trusts/Integrated Care Boards were able to track their M.E. patients. This is simply not good enough. It is clear that many who are living with this dreadful disease are slipping under the radar.
Undoubtedly, we need more and better-funded research to understand the causes of M.E. and, ultimately, to find a cure.
