Avril McLean from Action for M.E. discusses the challenges for people living with M.E. and the range of self management support they offer.

I have now worked alongside people with Myalgic Encephalomyelitis (M.E.) for eight years and I am struck time and again by how difficult it can be for them to get the support they need. People with M.E. invest so much time and energy to continue to participate and contribute that many people may not understand just how debilitated and unwell they feel.

At times this means that people’s search for support can be harder than it needs to be and there can just be nothing out there that meets their needs. This can leave people feeling isolated and alone while facing very difficult situations. Someone who is so-called mildly affected by M.E. may have lost about 50% of their previous ability to function. People who are severely affected may not be able to leave their bed and could be completely dependent on others (see our functional ability scale for illustration).

Self management is an essential tool, as pacing is the main strategy that people with M.E. use to manage the impact of their condition and its key feature, post exertional malaise (PEM). Yet it has always struck me that we are asking people to take on another extra activity that all of us would find difficult to do, while also managing the impact of a devastating health condition. Pacing itself is something that takes time and energy to learn, and it is still not a cure.

Action for M.E. offer many services and resources to empower people with M.E. and the people who support them. These can aid with self management, for example our free counselling for young people with M.E. and free forums where people can get and give peer support.

We are currently piloting some mindfulness sessions, not because mindfulness will fix people’s M.E. but because these sessions offer a moment to be with other people in the same situation and an opportunity to pay attention to what is happening physically, mentally and emotionally. Self management requires effort and discipline above and beyond normal day-to-day activities so at times people can need support to be able to support themselves. They also need an opportunity to laugh and chat when they can with people who understand their day-to-day experiences. If you are interested in attending a mindfulness session, please contact us.

The other side of self management is working in partnership with GPs and other healthcare professionals. Nobody should have to manage M.E. without having a professional who understands how the condition can impact their health and quality of life. People have told us that having a professional who listens and is prepared to explore what might help with managing the wide range of symptoms such as pain, unrefreshing sleep, fatigue and cognitive difficulties (brain fog) is invaluable. Unfortunately, many people do not have this experience.

Addressing this gap in knowledge and understanding is another part of our work. Through our partnership project, Learn About M.E., we can signpost GPs to accredited training on M.E. This CPD training is free, available online and gives them knowledge and confidence to diagnose and manage the symptoms of M.E. We have produced a series of complementary podcasts to accompany this module. These offer further clinical knowledge for healthcare professionals, explore related topics, and include the voice of lived experience. We have a template letter that can be sent to GPs or other health care professionals to let them know about the training, podcasts and the latest NICE guideline on M.E., sometimes known as Chronic Fatigue Syndrome.

I would like it if everyone who has a hidden invisible health condition could feel that they had the support and understanding that they needed to manage their condition. No one should have to manage M.E. on their own.

End of page.

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