The main focus of this post is to show you in a step-by-step way how you can edit MEpedia. I was very happy to recently discover the MEpedia website, I think it is a wonderful way to bring the community together and make our voices heard. If you have not heard of this wonderful resource yet, do go have a look!
In a nutshell, ME-pedia.org is a knowledge base powered by the patient community. It was founded by MEAction and relies on crowd-sourcing to build an encyclopedia on the history, science and medicine of ME and CFS. Anybody can get involved and help populate the website with relevant content. Yes, even you!
That means patients, carers, charities, scientists and advocates all working together to create one huge bank of information about ME/CFS! A place where anybody can go to find answers, community and support. Brilliant!
Welcome to my first guest post in this new series where we will explore the impact of chronic illness and disability on our daily lives. Illness can have devastating effects not only on our own lives and bodies, but also on those closest to us.
Despite this, you might be surprised to find out just how resilient and courageous people with chronic conditions are. We weren't really given a choice in the matter, we have to quickly learn to adapt in spite of harsh conditions. I hope you will enjoy this series and perhaps even learn a few tricks on how you might improve your quality of life.
Today I have the privilege of sharing Hailey Hudson's story with you.
Hailey is a 19-year-old published author who freelances as a voiceover artist and is the site coordinator at a charity that tutors refugee children.
Who am I? it is important to reflect and decide who you are in life, your dreams and goals, your passion and purpose. But when you are diagnosed with a severe chronic illness it can become a bit blurry.
When you can no longer do the job or hobbies you used to do or think and learn and read the way you used to, it can seem like all those plans you had for your life are a distant memory, an impossibility...
The truth is that although things are very different now, it's still possible to find joy and meaning in every day and even discover or fulfil your purpose.
May 12 is ME Awareness Day. A global day of "Millions Missing" protests and demonstrations by people with ME, their carers, family and friends. Many patients are too ill to leave their beds, so rely on these supportive individuals in their lives to do the footwork for them.
We would be lost and hopeless if not for the able bodied supporters who take our place at these rallies and make some noise for those of us too ill to do it ourselves.
I have recently been asked by a few people how they could practically help our cause. I will attempt to list some ideas and links to other initiatives that would greatly benefit from any support you can give.
When I was first diagnosed with ME/CFS, I felt lost. Chronic Fatigue Syndrome was a condition I had never heard of before and my doctor didn't seem to know much about it either. What got me through was the support of other patients I found online. And they continue to be my support as the years go by! For this reason I have created an ME/CFS community online.
It consists of a few places on social media where bloggers, vloggers and other content creators with ME/CFS (and their carers) can share their content to help support the ME/CFS community better.
My hope is that newly diagnosed patients, or anybody struggling to manage life with ME, would not struggle as much as some of us have to find the support and resources available to them.