Slightly tweaked paper copy sent to the BBC Casualty Writing and Production team.
I am a UK-based social entrepreneur who is tackling the social issue of Myalgic Encephalomyelitis with my social enterprise ME Foggy Dog. As part of this work, Foggy – a soft toy mascot – goes on adventures to raise awareness of the disease and to fundraise for biomedical research for the Cure ME team at the ME/CFS Biobank. To be clear, I am not contacting you for fundraising help. However, Foggy has a bucket list. Myalgic Encephalomyelitis being a Casualty storyline is on that bucket list (with Foggy as an ‘extra’)
Can I please ask why Myalgic Encephalomyelitis (M.E.) has not been represented as a serious neurological disease in any Casualty storylines since your show started in 1986? M.E (also known as Chronic Fatigue Syndrome) has only ever been given a side-mention when safeguarding or psychological issues are in question, despite the World Health Organisation categorising M.E as neurological since 1969.
Prior to COVID19, Myalgic Encephalomyelitis affected over 250,000 people in the UK and between 17-30 million worldwide.
NOW – Half of Long Covid patients meet the diagnostic criteria for M.E. This is due to both the COVID19 virus and vaccines (it has been known for many years that vaccines can be a trigger for M.E in rare instances) We do not know how many now have a M.E (or M.E/C.F.S) diagnosis in the UK but it could well be up to one million by the time the pandemic eventually ends. Many Long Covid patients have been receiving a M.E (M.E/C.F.S) diagnosis for well over 18 months already, yet this is not being mentioned in mainstream media.
I am asking you to be brave and bold, highlight an enormously misunderstood life-altering illness and help the M.E community to raise awareness. It is a highly complex illness but with subtlety and/or a long-term plotline, I feel it would be possible to truly represent this invisible disability.
M.E has never been given more than a fleeting mention in mainstream dramas (Doctors, a few years ago). This is your chance. Be the first to put M.E front and centre, again…be bold!
You have highlighted mental health, Autism, Dementia, Huntington’s Disease, and a wide range of A & E-related health issues. Yet you haven’t represented a large segment of society by not dramatising a chronic illness that destroys lives and affects people of any age, race or gender. You are not truly representing society by omitting M.E.
M.E patients require urgent care too. People living with M.E also have specific needs when in clinical settings.
Around 10% of medical students receive training on M.E (or M.E/C.F.S), this is why, as Managing Director of Stripy Lightbulb CIC, I created an online training course for healthcare professionals. There is a wide knowledge gap on this type of disease within the medical profession. I believe this is why Long Covid took so many by surprise, they hadn’t previously learned about or paid attention to M.E. I would be happy to give your writing team and researchers free access to this online training (around 3 hrs of learning) to ensure M.E is accurately represented.
I have a number of ideas as to how M.E could be included within your show, I’d be very happy to work with you if you are interested. I strongly believe it IS possible to dramatise and perform an invisible disability.
Founder of ME Foggy Dog – see mefoggydog.org.
Founder/MD of Stripy Lightbulb CIC – see stripylightbulb.com