A new package of measures to improve support for people affected by myalgic encephalitis/chronic fatigue syndrome (ME/CFS) has been announced by the Government and welcomed by ME charities.
The Department of Health and Social Care (DHSC) acknowledged that people with ME/CFS have complained about not feeling listened to by professionals, and that the impact of the condition on their daily life has not been understood or acknowledged.
An 8-week consultation, launched in conjunction with the Department for Education and the Department for Work and Pensions, aims to "improve understanding, research, and care" for those living with ME/CFS" and has been welcomed by charities.
According to the DHSC, ME/CFS affects an estimated 241,000 children and adults in England, with one in four of those diagnosed affected so severely that they are house- or bed-bound and require 24-hour care. As there are currently no known cures or treatments for the "incredibly debilitating condition", the proposed interim delivery plan centres around "living with ME", as well as seeking views on research, attitudes, and education.
The key problems identified in living with ME/CFS include:
- Reduced quality of life for patients, family members, and carers
- Struggles to access appropriate specialist ME/CFS services
- Routine health and social care support, particularly for severe symptoms
- Children and young people's access to education
- Welfare and employment concerns, including the benefits system
Professionals' Attitudes Can Be Upsetting
The use of language in "ways that frustrate or upset people who have ME/CFS" is highlighted in the consultation document. These include the attitudes of professionals, with reports by some patients of not feeling believed, or having the impact of ME/CFS on daily life unacknowledged. Expressions such as 'medically unexplained symptoms', although medically accurate, can be misinterpreted and create barriers with clinicians, the DHSC said, which noted that ME/CFS remains "poorly understood" because it is not clear what causes it, and there is no confirmatory diagnostic test.
The most recent NICE guideline highlighted four symptoms needed to 'suspect' ME/CFS: fatigue, post-exertional malaise, sleep disturbances, and cognitive difficulties ('brain fog'). However these are non-specific, can be hard to interpret, and require exclusion of other possible causes. The plan acknowledged that current professional attitudes towards ME/CFS are not well evidenced, and there were limited opportunities for education and training for professionals.
Among proposals set out are e-learning packages to be developed by NHS England, one of which will be targeted at medical schools with encouragement to provide undergraduates with "direct patient experience" of ME/CFS. Another proposes that the Royal College of Physicians ensures that its training on ME/CFS "keeps pace with research and guidance".
The interim plan proposes that the UK Clinical Research Collaboration establishes working groups to develop case studies, educate practitioners, and support funders. A landscaping review will be commissioned through the National Institute for Health and Care Research which will support workshops to develop research questions and set priorities.
Plan a "Positive Step Forward" But "Only a Start"
The charity Action for M.E. welcomed the plan. CEO Sonya Chowdhury said:
"This is a positive step forward for people living with ME/CFS, but it is only a start; much more is needed. The focus must now shift to delivery and outcomes."
ME Research UK said that the consultation was "an opportunity to comment, suggest and press for improvements", and had "the potential to deliver concrete benefits to the lives of those affected by ME". However "constructive involvement" by central funders of research – the NIHR and Medical Research Council – would be needed if aspiration were to be transformed to reality.
Both charities urged people to contribute to the consultation, which is in the form of an online survey and invites views from those affected including patients, families, carers, healthcare professionals, and researchers. The consultation period runs until 11:59pm on 4 October.