Myalgic encephalomyelitis (ME) is a disease that has repeatedly hit the headlines in 2021. Sadly, this has often not been for the right reasons. Patients and their advocates fought the system and parts of the medical establishment – as well as their own bodies. But within this are stories of hope and resilience against all the odds. People with ME: a traumatic year For people living with ME, their advocates, families, and supporters, 2021 has been traumatic, at best. On a basic level, you have a debilitating and poorly-treated neuroimmune disease that affects every aspect of the patient and their loved one’s lives. For many, the worst part is a worsening of symptoms brought on by physical activities, mental activities, or both. This is called post-exertional malaise (PEM). In layman’s terms, every time a person living with ME does any form of exertion, they get even sicker. It’s one of the cruellest parts of the disease, because tasks most people thinks of as ‘normal’ – like washing up – can make a person with ME really ill. Light amid the perpetual dark Still, each person living with ME also has moments of light amid the often perpetual dark; however fleeting they may be. I asked the ME community on social media to tell me some of theirs. I had an overwhelming response, which was lovely. You can read all of people’s thoughts here. https://www.thecanary.co/feature/2021/12/23/me-the-year-in-review-sickness-lies-and-subversion/
Thanks @Andy. I found this whole article so moving. “Moreover, the story of ME is an infinitely complex and multi-layered one. I tend to write about it a fair bit. But even I haven’t explored many aspects of this story nor its full history, or how it all intersects with the agendas of corporations, the government, and certain medical professionals.” Indeed there is a long a disturbing history. I learn things and forget them sometimes just because I am ill but sometimes I think because it’s just too upsetting. Still there is a desperate need to share this information in an accessible format and Steve is great at this. I look forward to these further explorations.
