By Sean O'Neill
The health secretary has spoken of a young relative’s battle with myalgic encephalomyelitis (ME) as he promised a new approach to the debilitating illness
Sajid Javid said that the health service had failed in its attitude towards treatment of the illness but pledged to lead a cross-government initiative on ME. This would involve healthcare, education and the benefits system, while placing a new emphasis on research into the poorly understood condition. He will convene a panel next month with researchers from around the world in an effort to encourage new treatments.
Speaking at the launch of Rethinking ME, an all-party parliamentary group report, the health secretary disclosed that a close family member had been struggling with the chronic illness for six years. At the age of 12, his relative had gone within weeks from being an active girl who captained her school netball team to one who struggled with fatigue and low energy. Her schoolwork had suffered and doctors had been unable to explain her illness or offer any treatment. Javid said he felt that once they had given a diagnosis of ME, doctors had nothing to offer his relative.
“She is now 18 and there is still no improvement. She is desperate to get on and do things and there’s no end in sight,”
“Some clinicians try their best but I don’t think the system as a whole realises how serious this issue is and how it has been neglected for far too long”.
Sajid Javid, Secretary of State, Department of Health and Social Care
At least 250,000 people in the UK have ME, which affects more women than men. Common symptoms include pain, profound fatigue, post-exertional malaise, gastrointestinal problems and cognitive dysfunction. There is renewed interest in the condition, partly because of significant overlaps with long Covid in terms of symptoms and post-viral triggers. The cross-party report said that a “turning point” had been reached in accepting that ME is a physical rather than a psychological condition but that work remains to be done to bring about change for patients.
The report said:
“People with ME require major cultural change to take place within all professions associated with their care and support. Sadly, false and outdated understandings of ME still circulate within medical and public discourse, making it more difficult, and often impossible, for people with ME to access the services to which they are entitled.” It continued: “The ME community and their advocates within the medical profession and wider society have made significant strides in challenging erroneous understandings and pressing for improved care.”
“There has been a long-term disconnect between the treatment deserved by people with ME and what they experience in reality. This disconnect stems from . . . a lack of understanding of the biomedical nature of ME amongst many professionals associated with caring for and supporting people with ME, the absence of sustained research funding to develop our understanding of the underlying disease mechanisms, and a scarcity of evidence-led clinical services.”
‘Rethinking ME' APPG on ME Report (25 May 2022)