World ME Day

Andrew Gwynne discussed the impact of ME and long covid, highlighting that at least 250,000 people in the UK live with ME and an estimated 1.3 million people have ME-like symptoms following a COVID-19 infection. He emphasized the debilitating nature of the condition, including fatigue, disturbed sleep, exhaustion, and brain fog. Gwynne also pointed out that ME costs the UK economy about £3.3 billion annually and called for better understanding and support from employers and changes to welfare systems.

The publication of the final ME delivery plan has been delayed multiple times, with 62 deaths attributed to ME between 2017 and 2021. The speaker pressed for immediate release of the final plan before a potential change in government priorities. She highlighted that one in four people with ME is severely affected, requiring house-bound or bed-bound care and needing 24-hour support. Carol Monaghan questioned why many health trusts were not implementing new guidelines and asked the Minister or his Department to remind health boards of their obligations.

Congratulated the Health Secretary on championing ME sufferers and their families. Highlighted that women make up 83.5% of recent survey respondents among ME sufferers, five times more likely than men to suffer from it. Stressed the need for investment in research to find causes and effective treatments for ME, with a focus on women who are disproportionately affected.

Danny Kruger acknowledged the importance of leadership on this issue, raising concerns about the medical profession's understanding of ME. He asked for assurance that a delivery plan would include better training across various medical professionals to improve their skills in dealing with the condition.

Ms Anderson highlighted the severe impact of ME on individuals, noting that at least 250,000 people suffer from ME in the UK, with many more undiagnosed. She criticised the lack of research funding and called for an end to stigma, full implementation of NICE guidelines, and urgent publication of the cross-Government ME delivery plan.

Helen Morgan pointed out that only 28% of NHS trusts are using NICE guidelines for ME, and she urged for consistency in treatment approaches to ensure patients receive the necessary care.

Jim Shannon acknowledged his limited understanding of ME but recognised the pain and suffering experienced by those with the condition. He highlighted an article stating that over 55 million individuals worldwide are affected by ME, which has significantly increased due to its intersection with COVID-19. Shannon emphasised the importance of addressing gaps in understanding, treatment, and research for ME and called for better support from health and benefits departments for those suffering from ME and their families.

Mr McDonnell expressed concern about the lack of recognition for ME's impact on society, highlighting mental health consequences and the need for more research. He was shocked by the low figures in briefings regarding service availability despite NICE guidelines. Additionally, he raised worries about ongoing reforms to the benefits system and the lack of protection at work for those with ME. John Martin McDonnell suggested it would be helpful if the Minister could write to them about areas that require refinement before finalizing the delivery plan for ME services.

Margaret Hodge highlighted the case of her constituent Sienna Wemyss, a 16-year-old diagnosed with ME who has not received an education, care and health plan. She stressed the need for better collaboration between health and education departments and local healthcare facilities to address such issues.