Action for ME are collaborating to change things for people with ME

“Working collaboratively has increased the value of what we offer and made our message that much stronger.”

Action for ME have been working with partners including Dr Nina Muirhead, #MEAction Scotland, The ME Association and Long Covid Scotland, to bring the experience of people with Myalgic Encephalomyelitis (ME) and Long Covid together with the latest medical and scientific knowledge on ME to GPs and other healthcare professionals working in Scotland.

Through working with doctors, nurses, physiotherapists and occupational therapists, charities, and people with lived experience, they can offer resources that contain the latest clinical and evidence based knowledge on this condition, along with first hand reports on how it impacts someone’s life.

Historically, ME has been misunderstood and there has been stigma around the condition with people having their devastating symptoms dismissed. This has been repeated for many people with Long Covid who also have the hallmark symptom of ME, post exertional malaise.

In ‘Learn about ME’, they promote an accredited continuing professional development (CPD) module, created by a doctor, which offers knowledge and understanding around this condition. The module is based on ten clinical case studies, and these illustrate how ME impacts people and how GPs can recognise and diagnose ME.

Using people’s experiences makes it easier for a GP to understand how they can approach ME and other post viral conditions differently. After completing the CPD assessment, they can find out where they have gaps in knowledge and understanding and follow up on suggested further reading.

Many GPs and other healthcare professionals in Scotland have now completed the module. When Action For ME surveyed people who had completed it, over 90% said they now had more confidence in diagnosing and treating ME. They hope that, as a result, people can get a diagnosis quicker and get more support to manage the impact of ME and Long Covid.

The ME community has also benefitted directly through contributing to the accompanying ‘Learn about ME’ podcast series. The podcasts give people with ME and Long Covid a valued platform to share their experiences, describe the support they need, and pass on the practical insights they have gained from living with these conditions. By placing lived experience alongside vital professional knowledge, each episode helps healthcare professionals and others better understand the realities of ME and Long Covid. With more than 10,000 listens, the series is amplifying community voices, challenging misunderstanding, and helping to build greater awareness and empathy.

In the beginning of the project, they found it challenging to engage with GPs, so they used a variety of methods to contact them, including attending conferences and events. This is one of the strands of work that has shifted, as they now have GPs and Consultants stepping up to engage with them and their materials. Avril, a Projects and Participation Senior Practioner at Action for ME shared, “After Covid, healthcare professionals viewed post viral conditions differently, as many had firsthand experiences of their impact. They also have more people showing up at their surgeries with symptoms related to ME or Long Covid. With the result they are now more open to finding out how they can help people with these conditions.”

Working as a team at events with their partners allows them to supplement the knowledge and expertise the resources offer with direct contact with charity staff and volunteers who either have ME themselves or care for someone with ME. Avril reflected, “this is a powerful experience to connect directly to GPs to change things for the people with ME and make a difference for the ME community.”

They hope that sharing people’s insights improves the support that others receive in the future as GPs have a greater understanding of the condition through accessing these resources. Avril concluded “working collaboratively has increased the value of what we offer and made our message that much stronger.”

The Learn about ME resources and other signposting can be accessed here: https://www.actionforme.org.uk/resource/professional-development-for-me/

You can read all Connected Communities case studies here: https://www.alliance-scotland.org.uk/blog/case_studies/?projects=connected-communities.