Myalgic Encephalomyelitis, or chronic fatigue syndrome (ME/CFS), is a long-term condition. Key symptoms include extreme physical and mental fatigue that does not improve with rest or sleep, exhaustion after exertion, muscle pain and many other symptoms related to the nervous and immune systems. These can impact a young person’s ability to consistently and sustainably carry out everyday tasks, attend regular schooling and participate in the normal activities of daily living. They can also have a profound impact on both mental and emotional health.
At LPFT we are fortunate to have a highly specialist ME/CFS team dedicated to providing diagnosis, treatment and support to both adults and young people suffering from ME/CFS. During the pandemic, the team recorded some well-received guidance and support resources for adults suffering from chronic fatigue, including Long Covid. However, it was felt that these resources were not appropriate for young people, who learn and communicate in different ways to adults.
So, never ones just to accept the way things are without trying to make them better, the team’s clinical lead Lynsey Woodman and fellow specialist occupational therapist Grace Parker decided to take action.
They applied to NHS England for special funding under the auspices of the Mental Health Investment Standard (MHIS) to create a series of six educational videos for young people aged 11 to 17 and were successful.
Next, they brought together a focus group of young service users from both Lincolnshire and Nottinghamshire to ask what they themselves wanted from the videos and sent out a QR code more widely that linked to a questionnaire. What they learned from the responses was that the young people wanted videos that were lively, informative and positive, as short as possible and featured both young people and professionals.
With the MHIS funding, the team recruited a professional videographer and presenter and then wrote the scripts for six bite-sized videos covering the topics requested by the young people.
Lynsey Woodman explains:
“When we looked at the resources on chronic fatigue already available for young people, they all seemed so negative and offered little hope. They were also often in booklet form, and we questioned whether young people actually read the information in them. After getting the views of young people themselves, we wanted to create resources that offered hope and positive advice to people in their situation. We wanted to validate young people’s experience and show that there are steps they could start to take to manage daily life and then hopefully, over time, significantly improve their health and wellbeing.
“We also knew that many young people don’t have a specialist service for chronic fatigue available in their area, and many of them can feel like they’re not being understood by GPs, other healthcare professionals, schools, friends and family. These videos are, therefore, intended to be disseminated for use anywhere they may be useful.”
The videos have now been delivered and uploaded to YouTube, and feedback from within Lincolnshire, Nottinghamshire and further afield has been very positive. Other trusts have expressed an interest in using the videos, including in Sheffield and London.
Lynsey and Grace are now writing a paper for a journal about their initiative to increase awareness, and hope that the videos will become a national resource that offers hope to young people with chronic fatigue. Several of these videos highlight stories of hope shared by young people with chronic fatigue who helped to create them.
