People with Myalgic Encephalomyelitis (ME), a fluctuating, debilitating neurological condition, face stigma and discrimination. In Scotland, there are no specialist services or a clinical pathway for ME despite it being a common condition that negatively impacts the Quality of Life of not only the person living with ME but their families. Research has shown that ME has a more significant impact on Quality of Life than many other serious conditions including cancers[1].
ME, sometimes called chronic fatigue syndrome, is often misunderstood due to the main feature of the condition, post exertional malaise (PEM). PEM results in a worsening of symptoms after minimal exertion (physical, mental, emotional). Its onset can be delayed by hours or days and is completely disproportionate to the exertion and it can last for hours, days, weeks or longer. Other symptoms of ME are disabling fatigue, unrefreshing sleep and cognitive impairment (brain fog).
It is a multisystem disease so symptoms can be experienced in different body systems. People with ME are often unable to work or study full time, with many being housebound or bedbound.
What do people with ME need?
Action for ME provide support, services and takes action to address the inequalities and inequity many people face through lack of understanding and an absence of services and support. Historically – and wrongly – ME has been seen as psychological and is often dismissed not just by health and social care services but friends and family too.
People struggle to understand the fluctuating nature of the disease, as people can be able to function one day but completely floored in following days without having seriously exerted themselves.
People with ME often end up managing their condition alone. Our services stop them feeling isolated and stigmatised. Unfortunately, the people most affected by ME are least able to reach out for help and support as they are too unwell to engage. Our services are designed to be accessible, understanding the condition and taking time to listen are key.
Education and training on ME – Learn about ME
We work in partnership with other ME charities and a doctor to promote an accredited continuing professional development (CPD) module on ME for GPs. We have complementary podcast episodes featuring the voice of people with ME and covering different issues and topics related to health and social care.
This project addresses a key discrimination many people with ME face, due to misunderstanding about the condition, people have been harmed by receiving advice to increase activity rather than pace and conserve energy. Increasing awareness of the latest advice and guidance on ME amongst healthcare professionals reduces the potential for people to be mis-diagnosed or given harmful advice. Feedback on the CPD module and the webinar for GPs has been overwhelmingly positive and they have given GPs more confidence in diagnosing and managing the symptoms of ME.
Standing with people with ME to drive change
We are a member of the Neurological Alliance of Scotland (NAoS). NAoS collates the results from the My Neuro Survey and past surveys[2] have highlighted that 58% of people with ME who responded had waited over 12 months for a diagnosis. We use this information to advocate for change around this condition. The latest survey runs until the 15th of November and can be completed by carers, adults, children and people waiting for a diagnosis of a neurological condition.
We have also led a partnership of people with ME, carers and clinicians to identify the top research priorities in the ME field. The report on this work can be read here. In another partnership (Decode ME) we are working with the University of Edinburgh on the world’s largest genetic study into ME. Patient and Public involvement has been key to the development of the research project and it is hoped that the results will help to build a better understanding of the underlying mechanisms of ME.
Avril McLean is the Projects & Participation Senior Practitioner at Action for ME
[1] Vyas, J.; Muirhead, N.; Singh, R.; Ephgrave, R.; Finlay, A.Y. Impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life of people with ME/CFS and their partners and family members: An online cross-sectional survey. BMJ Open 2022, 12, e058128.
[2] Neurological Alliance of Scotland. Together for the One in Six, findings from My Neuro Survey in Scotland. Page 21. June 2022. Available at URL: https://www.scottishneurological.org.uk/files/one-in-six-findings-from-my-neuro-survey-in-scotland-final.pdf.