Since the start of my advocacy back in 2014, it has been very clear to me that many people in the wider world, outside of our M.E bubble, don’t care about Myalgic Encephalomyelitis because it doesn’t affect them personally. They don’t know anyone with the illness (that they are aware of – nondisclosure, anybody?!) and don’t think it could happen to them.
It has struck me recently that this is exactly the same narrative that we are hearing about Covid19 and Long Covid. How many times have we seen social media posts claiming that the virus is a hoax or overstated because they ‘don’t know anyone who has had it’? I don’t wish ill health on anyone but the narrative is only going to change if more and more people get sick.
With my advocacy, I’ve always believed and stated that everyone knows somebody with the disease. M.E is not rare. So, why do so many people not realise, or at least acknowledge, that it exists? It’s not as if our community doesn’t talk about it and raise awareness at every opportunity. The media often publishes a false narrative or downright inaccurate and misleading information but it does mention M.E fairly regularly. How can anyone say they have never heard of M.E (or C.F.S)?
I now believe that society as a whole has become very self-centred and blinkered about anything that doesn’t directly affect them. It’s a sad place to be but it is what it is. Unfortunately, increasing numbers of people are becoming chronically sick as a result of Covid19 and I’ve lost count of the apologetic social media posts sent to our community by people who are newly chronically sick. They are apologising for not previously taking our plight seriously and many have offered to help our cause ‘when they get better’. I’ll take help and support in whichever form it is offered and am grateful that many have now had their own lightbulb moment where chronic and post-viral illnesses are concerned.
It shouldn’t take someone experiencing the hell that is chronic illness to get some empathy and engagement. I was that person prior to 2006 when I first got sick for the second time (I was undiagnosed in my teens). M.E was something I’d vaguely heard of but hadn’t engaged with. I doubt I am the only M.E patient who can admit to that, we are asking people to do what many of us didn’t do ourselves.
It is so easy to become chronically sick, a simple virus can cause absolute destruction to all systems of a human body. The notion of ‘it won’t happen to me’ is a false belief for so many people. Currently, 1 in 20 people who get Covid19 are becoming Long Haulers. Of those 1 in 20, around 10% are anticipated to develop post-Covid19 M.E/C.F.S. It’s happening, some patients who caught Covid at the start of the year have been given that diagnosis already by their GP. Our community is growing, as MPs like to say, exponentially. Thinking about how many will be joining our community over the next year or so makes me feel uneasy. We simply do not have the infrastructure or knowledgebase for a huge influx of new patients.
Scientists still don’t know why most people recover from viruses but a minority go on to develop M.E. We just don’t know enough about our disease yet. M.E affects people from all walks of life and doesn’t discriminate in terms of age, race, gender, physical fitness, or weight. ‘To those saying ‘it doesn’t affect me’……..how do you know it won’t in future?
It could be you or a loved one, as with the rest of the M.E community, I’ll be here to help and support if you do become part of our community but I’d love it if you could get involved without needing to be personally affected first. We need fit and healthy people to get engaged with our fight to take some of the advocacy load. Sick people are having to fight to have their disease validated and recognised by the medical establishment. We need people who can march and put the hours in. We do as much as we can but, due to having the illness ourselves or caring for loved ones with the disease, our actions are limited.
Get involved – please don’t wait until it DOES affect you!
Sally and Foggy (OBVIOUSLY)