I have some news that I would love to share with you, my very supportive community.
I am very proudly gathering a living list of people who have, or have had, ME.
why a living list …
You may wonder or be asking, why would I be doing this, especially given how severe I am these days.
Well, there are tons of reasons, personal and practical, and I’d love to share them all with you. But, it would take way too long and use way too much precious energy.
That said, the main few reasons are:
As well as raising awareness regarding ME as a condition, I would also hope to be able to use the list to simply highlight just how many people all over the world have, or have had, ME, and at what disability levels too. Hopefully, showing recognition to and for how many real people have lost their ability to live a full life because of ME. Perhaps, one day, to even be able to present it to world governments in order to help get even more recognition and awareness for ME sufferers as well as access to benefits. And maybe allow and help researchers to use it to source much needed funding for research.
Who knows where it may lead!
We may be able to use it to lead to even bigger things than we could ever envision …
where is the list …
For a good while, you will get a ‘once a day’ popup reminding you about the ME list … and how you can add your details.
Once we have a fair few names we will stop the popup and simply rely on word of mouth to spread the news.
So, please do spread the news. Share the link. Add your name. Do whatever you can to get this list to grow big enough to make a difference. Big enough to present it to governments …
Long term the actual ‘ME list (home) …’ page will be in the main header links under ‘memorial … > ME list’, and the submission link will be under ‘memorial … > ME list > add your name’. Both can be found in the main header.
what info to add to the list …
Please include your full name (christian and surname), we won’t publish your surname, just the initial. Also, add any nickname you have and there’s a tick box if that’s all you want us to publish to the list.
Then include a paragraph or two about your story. Please feel free to be personal and detailed. But keep it to a few paragraphs as I expect the list to become very big eventually. Also, include one squarish photograph too. It can be from anytime you wish; as a baby, before you got sick, as you are now. You choose. And if you don’t want your picture up, then include something that symbolises you. If nothing is uploaded we will use the ‘placeholders’ you see above right, for those who identify as female, and those you see above left, for those who identify as male.
You can see mine, ‘Denise M aka fragmented.ME …’, for an example of how much and what kind of stuff to write.
a small favour …
The was started during the ME Awareness month in 2022, and any responses will have been accentuated by the extra effort ME sufferers put in during awareness month. However, I expect things to slow down after that. So, could I ask that you share the idea and ask anyone you know with ME to add their names and details if they wish to be included.
Last Updated on 14/05/2022 by fragmented_ME