Action for ME is here for anyone affected by ME in Scotland
Action for ME is here for all people living with or affected by ME in Scotland. Myalgic Encephalomyelitis (ME) is a chronic, fluctuating condition, causing symptoms such as post-exertional malaise, sleep problems, problems with thinking and memory (brain fog), pain and crushing fatigue.
The key symptom that differentiates ME is post-exertional malaise (PEM). This means that simple physical or mental activities or a combination of activities can leave people utterly debilitated. PEM can lead to an increase in other symptoms, and it can impact people immediately or be delayed by a couple of days and rest does not improve it or the worsening of other symptoms.
PEM means that advice to exercise and get back to normal activities could result in harm for people with ME. A strategy of Pacing activity and rest to manage energy levels helps people to avoid PEM and its impact and is recommended by the NICE guideline on ME.
One in four people are so severely affected by ME that they are house or bedbound. Along with the 25% ME Group, Action for ME complied a report following an inquiry into severe and very severe ME, available here: https://www.actionforme.org.uk/wp-content/uploads/2026/08/Severe-ME-Inquiry-Report-August-2026-Action-for-ME-and-the-25-ME-Group.pdf.
The report highlights that the most affected people are often receiving the least care and support due to misunderstanding about this condition. It offers recommendations to improve people’s safety and experiences and to relieve the significant burden on carers.
Action for ME provide a range of services, support and information for everyone affected by this condition and those who support them. People can contact our Information & Support helpline to be signposted to information and resources or our or others’ service. You can contact them through email, infosupport@actionforme.org.uk or by calling 0117 927 9551.
Power
Attending VHS’s conference enables us to raise awareness of ME, our services and the resources we offer. People with ME do not always have the power to speak on their own behalf, so we speak up for them informed by their views and insights. Collaboration and equity are two of our values and inform all our work and how we work to include people with ME.
We will soon be releasing the results of our Big Survey, this takes place every five years and for the most recent survey we worked in partnership with Dr Katharine Cheston, a researcher from Medical Humanities, Durham University. Katharine linked with a Patient and Public Involvement Group to redesign the survey to ensure that both the accessibility and content reflects the needs and views of the community.
Partnership & Perseverance
We work in partnership to campaign and to inform professional practice in healthcare on ME. Any healthcare professional can access free resources to increase their knowledge and awareness of ME.
Many people with ME are experts in their own condition but self management can only go so far and support from an informed healthcare professional can make a vital difference to someone’s life.
We also work with the World ME Alliance and the Overlapping Illness Alliance to raise awareness of ME as a public health issue that needs attention. People with ME can look the same as they did before they became unwell so the devastating impact can be difficult for other people to understand.
Action for ME has been working to improve every aspect of life with ME since 1987. We work to ensure that the voices and experiences of people with ME shape our efforts. We will continue to raise our voice and work in partnership to secure change and meanwhile provide vital services that offer people a lifeline to stay afloat.
