Faces of ME
From our Members
One of the most persistent misconceptions about ME is that people don’t necessarily “look” sick. A major fallacy with this perception is that a simple trip to the grocery store can cause ME patients to spend days or even weeks in bed to recover. Me patients often only go into public spaces when they are at their best and have rested to be present. Few see the result of what happens to an ME person when they try and do “normal” activities. Even having a guest visit can leave a patient exhausted and unable to function for days. This is why isolation and depression are common.
This collage above is all people who suffer from ME and giving you a snapshot of them on a day they are at their best. Below you can read some of the stories they have decided to share.
The Impact of ME on Everyday People and Their Everyday Lives
Gina Livingston has released her new song, “My Bed.” The song powerfully conveys the urgent need for action—for the millions of people worldwide living with the severe neuroimmunological condition ME/CFS. Those affected often remain invisible and underserved. It is Gina’s personal mission to use this awareness song as part of an international campaign to give these people a voice through her music. “I want to use this to mobilize the public, the media, and supporters.”
Lost Voices Website
Here is a small blog post from The French Femme detailing some common struggles. Me sufferers want desperately to live normal lives but have to pick and choose small things and live with the consequences. Check out her A-Z of ME. Read More…
Meet Steph Spearing. She was young when afflicted with ME and through some bad medical advice has suffered and had her entire life trajectory altered. Read More.
Meet Alycia as she details her struggles and how ME nearly made her homeless. Living with a debilitating illness magnifies everyday situations into ordeals that can reshape the lives of ME patients. Being disabled with severe ME often means you are always on the verge of homelessness. Read More.
Meet Joan McParland, Founder & Voluntary Coordinator Hope 4 ME & Fibro Northern Ireland.
Joan writes a creative piece on the intersection of Covid 19 and ME and its impact. Read more
Meet Cynthia and read her humorous take on a normal task like cooking when you have ME. Read How to make Pizza dough here
Meet Paul Mc Daid (@paulthedaid) and read a detail account of one of the most common tribulations people with ME face. There have been years of confusion over the name of this illness and best treatments which have been fraught with bias and perpetuating bad medicine. Read more
Meet Kayla and read about her struggles with Cognitive dysfunction. This is a cornerstone symptom of ME and something everyone faces with ME. It causes people to lose their jobs and forces them to restructure their everyday lives. Read More about the Sloth in the Jungle.
These are just samples of the struggles people with ME endure. The millions of people around the world are left with their future plans destroyed and little hope of improvement. Families and friends rarely understand the toll this disease takes on the lives of the afflicted and how much time ME patients devote to accomplishing mundane tasks most of the world will give a second thought. We are your neighbors. friends and family. We are absent in life because we have been abducted by this disease not because we choose to be absent in life.
If you know someone struggling with ME, take the time to understand their needs and even if you don’t know anyone personally, help us make their lives better as we move forward toward better treatment and hopefully a cure. Please donate to end ME suffering.