Part of the debate – in the Scottish Parliament on 2nd February 2023.
First, I congratulate my colleague Sue Webber on bringing this member’s debate to the chamber today. As we have already heard, myalgic—I will not even try to pronounce it; we all know what I am talking about. Chronic fatigue syndrome is a complex medical condition that affects around a quarter of a million people in the United Kingdom, with around 20,000 people in Scotland living with the condition.
The Scottish Government commissioned a report that seeks to improve medical education and raise awareness of this devastating neurological condition. It is really important that clear and fit-for-purpose treatment and support pathways are in place to ensure that everything is done to provide the most appropriate support for everyone who presents with ME symptoms. I agree with other members, including Jackie Baillie, that not enough is being done at the moment.
Symptoms of ME are similar to, and have the same impact as, long Covid, which affects an estimated 192,000 people in the UK. It is understood that, for the majority of people with ME or CFS, the trigger that led to long-term disability was also a viral infection.
The report recommends that
“Pilot services are funded in a selection of NHS boards to test the development of specialist services with patient involvement and third sector collaboration embedded in the design.”
I hope that NHS Dumfries and Galloway gets involved in such a move.
The charity Action for ME provides much-needed support for people of all ages, including healthcare services, as well as funding and carrying out research into the condition. Alongside providing targeted information, support, healthcare services and advocacy to children, young people and adults with ME, it offers peer support services that reduce the isolation that often comes with the condition.
That brings me to the notable work that is being carried out in my constituency by the Dumfries and Galloway ME and Fibromyalgia Network. I have met the group on a couple of occasions and they are an inspiring bunch. It is heartbreaking to hear how the condition has completely taken over their lives and how young and not so young people who were once physically fit and active in work and leisure struggle daily with debilitating symptoms.
I remember a period in my early 20s when I faced similar symptoms. Thankfully, it was short lived. However, I remember going out to move cattle and ending up lying in the gutter sobbing because of the feeling of absolute despair at not being able to do anything and having no idea why. The frustration was overpowering.
The board of trustees of the DGMEFM Network is entirely made up of volunteers. Each comes with varied life and work experience and provides invaluable help in running the network. The charity, led by its chair, Eileen Longworth, has approaching 400 members and a further 430 members on its informative Facebook page, which allows people living with the condition to socialise with each other whenever they want to and are able to. Crucially, it also allows them to swap experiences and information.
In the past year, the network has been fortunate enough to secure £6,000 from the community mental health and wellbeing fund to start a range of projects locally, including free soup and sandwich facilities at its pop-up meetings. As the organisation moves forward, regular face-to-face meetings are beginning to start again. A Zoom facility will enable it to stage hybrid social meetings, where attendance can be virtual or in person. That will enable network members to attend no matter their situation. During the pandemic, Zoom was invaluable in cutting down the feeling of isolation for many network members across the region. The funding will allow the group to continue to allow those who are unable to attend in person to participate in craft workshops and to implement wellbeing workshops with a range of topics from mindfulness and yoga to soap making and calligraphy. Other outstanding work carried out by the network includes providing access to available services and valuable advice on where people can seek out support.
I will finish with the words from one member of the group:
“I have been off sick for months and feel very isolated and like I’m missing out on the fun bits of life.”
“really boosted my mood, self-esteem and I felt like going for a walk afterwards because I felt much better.”
As members can see, the friendship, support and kindness that such a network can bring goes a long way to improving people’s lives. My thanks go to everyone—all the volunteers, including those who live with those awful conditions—who goes the extra mile every day to help make people’s lives a little bit better.