Although things seem to have returned to some sort of normality for many of us there are still many people living with a long term health condition who remain in lockdown. A lot of people feel an increased sense of vulnerability as the numbers of Covid cases continue to increase in Scotland. I work at Action for M.E. and for many of the people we support lockdown was a familiar experience. If someone is severely affected by Myalgic Encephalomyelitis (M.E.) or Chronic Fatigue Syndrome (CFS) then they may be unable to leave their home or even their own bed due to the impact of their illness.
During the Coronavirus crisis and lockdown we altered our services to meet the needs of people with M.E. Like many others they struggled to get food and other vital services. We used the feedback from people to shape new services and projects to better reflect what was needed to address the problems they faced.
Two of these projects address these difficulties from completely different angles. Our Advocacy service, funded by The Alliance and the Scottish Power Foundation, supports people to advocate on issues relating to their M.E. These can range from a need for support to access adjustments in housing, employment, health and social care or to address barriers to services. This service is free, independent and operates via email, phone or video calls. People can download an information pack about the service and complete a form to refer themselves or others to the service.
The other side of the equation is appropriate support from health and social care services. Our Learn about ME project, a partnership project funded by the Scottish Government, promotes a free training module for healthcare professionals created by medical experts in this field. It offers 1 CPD point towards revalidation and is based on 10 clinical cases and the latest biomedical evidence. We also offer a series of podcast episodes with input from people living with M.E. and a webinar for social care or social work professionals.
Hidden and invisible
Living with an illness that is misunderstood is difficult for anyone. Many people think that M.E. is just being debilitated by extreme fatigue but that can be a very small part of the picture as pain, unrefreshing sleep, cognitive problems and post-exertional malaise (where simple physical, emotional or mental activity results in a worsening of all symptoms) can all mean that people are not able to engage in life. People with M.E. may plan and pace to attend an important event or appointments but that may mean that for weeks before and after they are unable to carry their normal activities. As a result, people see them only on good days and not when they have relapsed or are experiencing post-exertional malaise. For some who are more severely affected they have very little capacity to carry out basic daily tasks so may need support for this every day so planning for anything else may be not achievable as they are very unwell every day.
Support to access services and help
For anyone with a fluctuating condition like M.E. they sometimes need support to link into information, support and services and we hope that community link workers can be a vital link in the chain. It can take a long time for someone to get a diagnosis of M.E. but during this time our Information and Support service can listen to and reassure people. They can also offer resources and signpost to our latest project Listen to M.E., a space to be heard and understood during and after the process of getting a diagnosis, and facing the challenges that come with adjusting to life with a chronic condition.
Avril McLean is Projects and Participation Senior Practitioner at Action for M.E.