You Should Honour Severe ME Day
There are 4.5 to 6 million reasons why*
* About 25% of people with ME worldwide have Severe ME, so I googled the number of sufferers worldwide and did the math.
8 August was Severe ME Day 2023. Its a day to recognise and honour the strength and spirit of people living with severe ME. Housebound or bedbound, their symptoms are so severe they don’t have enough energy to meet their basic needs. As a result they are often invisible to the outside world, and even to medical researchers. With little support or guidance, those with Severe ME and their loved ones have to figure out ways to manage symptoms. Despite this, life is often still worthwhile.
Its also a day to acknowledge, remember and mourn those who have tragically died from this disease and from society and health systems that are not set up to support them. How do you access medical care when you can’t sit up, can’t bear the pain of being touched, or can barely speak above a whisper?
It often affects younger people, possibly because they have had ME longer, and because they were first sick before the illness was recognised. The advice to ignore symptoms and just keep going has, I believe, contributed to the disease burden of people with ME/CFS, Fibromyalgia and, now, Long COVID.
We owe it to people with Severe ME to listen to them, when they can speak, to believe them and to provide help, for example encourage governments to invest in medical research, or challenge anyone who suggest people with chronic fatigue, ME or Long COVID are ‘mental’ or ‘malingering’ or ‘faking it’.
Over to You:
This could happen to me, of course I hope it won’t. As ME/cfs is not understood by medical researchers, its hard to know how to avoid getting worse. The current research points to pacing: resting before you get tired. You can make rest more of a choice, less stigmatised, by resting before you get completely exhausted.
This could happen to someone you love. It may have already. Think about the people in your life… are any of them trying ‘pass as normal’ or assuming their low energy is just them being lazy?
This could happen to you. I don’t want to terrify you, but imagine you really believe that this could happen to you, too. Imagine how you might feel if you couldn’t get out of bed, no matter how hard you tried? How would the people in your life react? Does that change your view of people suffering with Severe ME?
Such a heart wrenching and insightful read Michelle, thank you.
Terrified that the CFS / ME / Fibro (as yet officially unconfirmed but my doctors say it on sick notes so as much validity as going to get till get to end of waiting list for specialist clinic) will leave me 100% bed bound as opposed to 50% bed bound I am now - thanks for raising awareness 💜