Carol Monaghan: ‘Without delay, ministers must address the inequalities experienced by those living with ME’

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.

I recently visited the team at the DecodeME study in Edinburgh, a joint venture between the University of Edinburgh and Action for M.E. This dedicated team are conducting the largest study of its kind as they seek to determine if there is a genetic element to this disease.

An increase in funding for research, allowing scientists to delve deeper into the complexities of this illness and develop targeted interventions, is crucial. By supporting robust, evidence-based research, we can uncover more effective treatments and move closer to developing a cure.

With already-stretched budgets, further funding for M.E. research may not yet be a priority for government. However, if ministers are committed to kickstarting the economy and helping people back into work, conditions such as M.E. must be taken seriously. Through critical research, destigmatised health interventions and a welfare system that supports people with M.E. to stay in the workplace, we would see an overall positive impact on productivity.

These changes are unlikely to come about without charities such as Action for M.E., that so effectively campaign for those living with M.E. As Chair of the APPG, I can advocate for those who so often do not have a voice. Though the wheels of Westminster can often be slow to move, parliamentarians have a duty to use our voices and privileged positions to advocate for those who are marginalised, stigmatised and left behind. Those living with diseases like M.E. need to know that they are being heard and that we, as legislators, are doing all we can to fight their corner.

I will continue to push for better funding for M.E. research and I look forward to playing my part in advancing the work of the Decode study and Action for M.E. is the UK’s leading digital-only political website, providing comprehensive coverage of UK politics. Subscribe to our daily newsletter here.