8 August 2014

8th August is Severe ME Remembrance and Awareness Day

Today, 8th August, is Severe ME Remembrance and Awareness Day for all those who have lost their lives to this horrific disease, and for those still living with it.

People who knew me before I was ill may think my situation is bad (and don't get me wrong, I'm not saying it's great), however I honestly count myself as fortunate as I know so many others who have much, much more severe ME than I do. I know of people who have died from it, I know people who literally only have days to live, and I know people for whom every day is a living nightmare.

My worst days are utterly hellish, and I have an agreement with my doctor that I can knock myself out with sleeping tablets on those days so that I don't have to be conscious through it, and yet days like that would probably count as a rare good day for someone with very severe ME. The level of their suffering is unimaginable - but so is their courage and strength of spirit. If only willpower, determination and fight determined prognosis, these would be the healthiest people in the world.


I want to write something meaningful, eloquent and informative, to honour these brave warriors and to raise awareness. But I can't. I just don't have it in me at the moment to write a proper post. But I guess that's kind of the point. Those of us with severe and very severe ME need others to take up the fight, because all our fight is spent just on surviving.

So I'm sorry for not being able to write a proper post, but please click on the links below for information written by others about Severe ME Remembrance Day and about severe ME, and please share this post or at least some of these links; the world needs to know what is happening, and those with severe ME need to know they are not forgotten. Thank you.

Individual stories:


(NB: men get ME too so I don't know why this fantastic article is in the women's section!)


3 fantastic posts on Sally Burch's blog:



25% Group & Stonebird Aug 8th Press Release (PDF):

Stonebird - a brilliant website about severe ME:

Facebook info about August 8th Severe ME Day:


Quotes from some internationally respected doctors about ME:

Facebook memorial page for those who have died:


 I'd love to hear what you think! Do leave a comment if you have anything you'd like to say about this topic. If you have any difficulty with this process, please see the Site Help page. Please bear with me if it takes a while for me to respond; I really appreciate you taking the time to read and comment on my blog, but I'm not always well enough to reply. Thank you :-)


Anonymous said...

I think what you wrote is perfect. Many people move on at the sight of a huge amount of text. And for those who want to read more you provided some excellent links. This is what I would have shared on that day if I'd seen it in time. -Jan

Rachel said...

Thank you. That really means a lot. I felt very inadequate about my post; I really wanted to do justice to those who are so very ill, but just wasn't up to doing it. I wasn't really up to doing the little that I did; it took a lot out of me and I had physical repercussions for quite a while afterwards. So it really means a lot to know that you found it helpful. Thank you so much for your comment :-) x