This November, Stripy Lightbulb CIC dedicated 2 weeks to educate people about Myalgic Encephalomyelitis otherwise known as Chronic Fatigue Syndrome (M.E/C.F.S) for Children in Need, and, it seems, we were the only M.E/C.F.S organisation to use the opportunity. We did some research, and as far as we can tell, no M.E/C.F.S charity has successfully bid for grants from Children in Need this year. Recently, there has been coverage about M.E/CFS in relation to how it is affecting the lives of children and young adults. Patients such as Gigi, Sanni and Hollie have had their stories shared online and in the media. So why aren’t more people aware of M.E/CFS? We cannot answer that question, but what we do know is that we want to bring about change!
M.E/CFS is the biggest health-related cause of long term absence in UK schools and this sometimes leads to ‘off-rolling’. The UK Government’s definition of ‘off-rolling’ is –
Off-rolling is the practice of removing a pupil from the school roll without a formal, permanent exclusion or by encouraging a parent to remove their child from the school roll, when the removal is primarily in the interests of the school rather than in the best interests of the pupil.
The stigma surrounding M.E/CFS means many children and young adults won’t disclose that they have the illness; they believe they will be stigmatised, and are aware that it is highly unlikely that they will receive appropriate support so disclosure won’t necessarily improve their situation. During this campaign, we wanted to show people first hand how much M.E/C.F.S can affect a child’s life, and we were able to do this with the help of Andrea (a 13-year-old girl) and An-nel (her mother). They were kind enough to share their heartfelt story, which you can read here – Andrea and Annel’s M.E/C.F.S story.
Every year. Children in Need highlights what children and young adults go through in the UK and elsewhere but also where they can get support from. We saw this year’s Children in Need campaign as the perfect opportunity to get M.E/C.F.S the recognition it deserves. Because no M.E/C.F.S charities were successful in getting monetary awards (as far as we are aware), M.E/C.F.S will not be included in any Children in Need marketing or the TV show on November 15th. Our #StripyCiN social media campaign gave M.E/C.F.S a voice during this period. We hope that we have educated people who were previously unaware that M.E/C.F.S causes many issues for children and their families.
Children with M.E/C.F.S
M.E/CFS steals many lives, but imagine being a child and not being able to go to school, not being able to maintain friendships, and not being able to be a ‘normal’ kid. This is the reality for around 25,000 children and young adults with M.E/C.F.S. One of the biggest messages of our #StripyCiN campaign was that education is desperately needed; professionals need to get educated.
Patients are unable to get the appropriate support they need when those who have a duty of care over them have not been educated on their illness. Imagine being the parent of a child with M.E/C.F.S, leaving your child in the care of their teachers at school, and being anxious because you KNOW that the school doesn’t have the right resources to look after your child? You would probably want to change which school your child attends, wouldn’t you? If your child has M.E/C.F.S the process involved in changing schools becomes a lot more complicated. Most schools won’t be able to cater to M.E/C.F.S as it doesn’t fit into the ‘one-size fits all’ policy for disabled students. This is why we believe all teachers working in any type of school need proper training, especially now that Ofsted’s new framework is heavily centred around the health and wellbeing of students.
Why do they need support?
In 2019, many children with M.E/C.F.S are leaving school without meeting their potential because of a lack of support and some are being ‘off-rolled’ and are left with no choice but to be home-schooled. On average, it takes around a year to get an M.E/C.F.S diagnosis, but it is common for the diagnostic process to take much longer. M.E/C.F.S patients need support as soon as symptoms start to have a better chance of not developing severe M.E/C.F.S – this wait for a diagnosis and appropriate support can have devastating effects. This long, often traumatic and stressful, diagnosis period leaves patients in limbo without support. There is no diagnostic test, but there are key indicators to help with the diagnostic process; this is why doctors also need proper training, many are unaware of these indicators. Without proper support, these children and young adults won’t be able to enjoy the small quality of life that having M.E/C.F.S has left them with. Children and young adults with M.E/C.F.S may have to endure excruciating pain and bad ‘crashes’ without treatment or adequate support.
Let’s all do better by every child and young adult; get educated about M.E/C.F.S.
Article written by Jackie Minta-Jacobs and Sally Callow.