Twice in a the past fortnight, I have been asked ‘what makes M.E so special?’. It has been pointed out to me that healthcare professionals don’t get trained on EVERYTHING at med school, and that they learn on the job.
I didn’t have enough energy to formulate a response at the time but I have been thinking about it for the past week or so. M.E IS a special case. As someone (I think it was Dr Nancy Klimas) said in the Unrest documentary – ‘M.E/CFS is the last common illness we know very little about’. The illness itself is a large enough issue to make it ‘special’. We are devoid of an essential life source – energy. Which means every single aspect of living is affected. Moving, thinking, speaking etc. It doesn’t ‘just’ affect our muscles, or solely our brains. It affects EVERYTHING.
Add to that a couple more factors and it is easy to see why M.E is ‘special’. Lack of acceptance as a valid illness/disability. When you have Dementia, Parkinson’s, Cancer, you don’t have to waste valuable time and energy explaining to people that you are genuinely ill, you don’t have to validate your illness (in most cases). The general public may not truly understand your illness but they won’t question it. The fluctuating nature of M.E can be confusing to people who know little about the condition.
In my experience, many healthcare professionals don’t know anything about M.E many years after their initial medical training. How can they learn on the job when so little is known about the illness? They go to Dr Google in exactly the same way as their patients do. Misguided information found online often leads to poor patient relationships and increased severity of symptoms.
The ‘M.E problem’ is so much more than purely being an illness that affects 17 million people globally (250,000 in the UK). It is a multi-faceted nightmare that consists of ignorance, doubt, stigma, and lack of research funding. We won’t start making head way with increased research funding from Governments until we get the medical profession/politicians to understand that research is needed. They need to learn about M.E.
This is where turning Foggy into a social enterprise comes in. In addition to the fun stuff, I will be training anyone who will listen about the human perspective of M.E. It’s early days and the structure of the CIC hasn’t yet been decided. BUT, training is desperately needed and it is, in my opinion, the best way forward. They need to understand their patients/constituents/students who are affected by the illness. Not just reading about it on a computer screen. I may have to do Skype training from my bed – conference calls! But, it’s definitely something I will be doing. I was going to call them BED talks…but I think I might get in trouble. Bit too similar to TED talks ha! Let me know if you have any suggestions.
and Foggy (OBVIOUSLY) xxx