ME Awareness Week 2019 runs from 6th -12th May, with the goal being to improve the general public’s understanding of this often misunderstood illness.
The ME Association is sharing stories from many of the ‘millions missing’, a term used to describe the many people out there who suffer from this illness and who have pretty much disappeared from their previous lives. I shared my own story with them which was published as an article in The Sun, with a fairly horrendous title but the content at least was well balanced. It feels uncomfortable having my story out there so publically but hopefully it will help at least a few people understand a bit more about this shitty illness. Judging by the comments on the Facebook link to the story, however, there are plenty out there who just think this is an excuse to stay in bed 🙈
So what are the key things I’d personally like to see more awareness of?
- There is no cure to this. There are many things that people try, and see some improvement with, but nothing that has proven to help
- The days I am looking ‘well’, able to socialise, work or generally be functional, are interspersed with many, many days of being confined to the bed or sofa, resting or recovering
- The symptoms are way beyond being ‘tired all the time’. I’ve posted about fatigue before, in the context of this illness, and it is all encompassing
- Mental exertion can bring on symptoms just as much as physical exertion – and by exertion, this can be as little as making a phone call or taking a shower
- There is no on going care from your GP once you are diagnosed. You are pretty much left alone to figure out if any ‘treatments’ work for you (these can range from diet/nutrition, musculoskeletal etc, which I have also written about previously)
- There is very, very little research being done on what causes this illness, and more importantly, what could cure it
- There are different grades of illness, from mild to severe. Thankfully I am in the mild category, but there are some who require full time carers and haven’t left their bed in years
Hopefully the stories being shared by so many of the millions missing this week will help improve general understanding of this illness but ultimately what is really needed is better understanding by the medical community – more research, more funding, more treatment, so hopefully there won’t be so many missing in a few years time.