NHS England will develop a course on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to counter ‘dismissive attitudes’ among health professionals.
Better training and education on ME/CFS is among 21 actions set out by the Government to improve NHS care for patients who are often not ‘believed, supported or treated equally’.
Many people with ME/CFS report ‘dismissive attitudes’ from some healthcare professionals and feel stigmatised, a Government interim report currently out for consultation states.
Some health professionals are not always aware of the latest NICE guidance with ‘misconceptions’ about the condition persisting, the report said.
The Department of Health and Social Care will identify professionals’ gaps in understanding around ME/CFS by September 2024 and NHS England will develop an e-learning module for those working in health and social care, the Government said.
It will include improved training on the condition in medical schools and medical colleges will be expected to ensure their training keeps pace with guidance.
A ‘Language Matters’ guide will be produced by the end of next year developed by healthcare professionals and people with personal experience of the condition.
Other action points include timely diagnosis and support for children with ME/CFS, and changes to the benefits system to improve people’s experience of assessment.
The the aim is to improve awareness and understanding of the services that are available to people who need additional support, including carers, the interim report said.
Six of the action points relate to prioritising and funding research on the condition targeted to patient need to improve understanding of the condition and disease mechanisms.
ME/CFS affects an estimated 241,000 adults and children in England.
NICE guidelines were updated in 2021 with an emphasis on personalised management plans. But there was controversy over recommendations around the use of exercise and cognitive behaviour therapy in treating patients.
Any programme based on fixed incremental increases in physical activity or exercise such as graded exercise therapy (GET), should not be used, NICE said. No therapy based on exercise or physical activity should be given as a ‘cure’.
Last month a group of 50 researchers from the UK and other countries published a systematic critique of the NICE process which they said led to guidance that ‘deviates from the scientific evidence’ and could result in patients missing out on treatments that could help them.
NICE strongly rejected the claims and said it would provide a detailed response.
The Government’s consultation, open for eight weeks, will ask for views on how well the suggested actions address issues important to those with ME/CFS and their families and how best to deliver the plan.
Health minister Will Quince said: ‘We know more needs to be done to understand this debilitating illness and to make sure those affected feel heard and understood by the health service and society more widely.
‘To help us ensure this plan is as thorough and considerate of personal experience as possible in its delivery, it’s important that those living the condition, their families, carers and professionals share their views.’
Professor Azeem Majeed, a GP and professor of primary care and public health at Imperial College London, said: ‘I think that NHS England’s initiative to provide enhanced training and education on ME/CFS is a commendable first step towards bridging the gap between the medical community and patients living with these complex conditions.
‘However, what is missing from the plans is any discussion about issues such as workload, funding, and timely access to specialist services.
‘It’s not possible to effectively manage a patient who presents with symptoms of ME/CFS in the typical 10-15 minute GP consultation.’
He added that in many parts of England specialist services and support services for people with ME/CFS are also lacking.
‘These issues also need to be addressed if we are to improve the care and health outcomes of people with ME/CFS.’