ME/CFS Awareness
Be a light.
Thank you for taking the time to read this. With this page, I am trying to raise awareness for ME/CFS. (myalgic encephalomyelitis/chronic fatigue syndrome). I'm neither an expert nor a patient. I'm just a friend of the cause hoping to do a small part to raise awareness.
CFS was the original term for the disease and, as it suggests, one of the symptoms is long-term, chronic fatigue. It's been described to me as similar to having the flu, but it never gets better. 'Myalgic' describes the muscle and body pain associated with the disease. 'Encephalomyelitis' represents inflammation of the brain likely caused by an immune response. Patients also can have memory loss, headaches, and vertigo. Many report depression or other mental illnesses that often come from living with a disease chronically. It's still called a syndrome because scientists and doctors don't yet know the underlying cause (just like doctors once couldn't explain the various symptoms and immune deficiency that came with an HIV infection, so they called it a syndrome, AIDS). There is a broad range in the severity of the disease. A significant portion of patients with more severe symptoms are no longer able to work and some end up spending most of their time in bed. Some people recover to regain their past lives. Unfortunately, some do not. From my experience, they are all special individuals who don't take the small things in life for granted.
There is a decent chance you've known someone who has or has had some form of the illness. ME/CFS affects millions of people worldwide (~1 million in the United States and 250 thousand in the United Kingdom alone). Yet unfortunately, the awareness of the disease by governments and the medical community has been low. Considering how many people have the disease, funding for research has not been adequate. Until more recently, doctors were not sufficiently trained to recognize the disease or worse, that the disease existed at all. ME/CFS is perhaps one of the last diseases where modern science and medicine do not understand the cause. I'm confident the cause, and then a targeted treatment, will be discovered. With awareness on the rise, we will get there faster.
If you would like to know more, I suggest reading this New Yorker piece by novelist and ME/CFS patient Laura Hillenbrand. If that link doesn't work, try this transcript or search for other reprints by searching for: "A Sudden Illness - How My Life Changed" by Laura Hillenbrand. You can also check out this mini documentary and page from the Open Medicine Foundation.
Be a light. This was the slogan for an ME/CFS awareness campaign organized by a dear friend.
Thank you for taking the time to read this. With this page, I am trying to raise awareness for ME/CFS. (myalgic encephalomyelitis/chronic fatigue syndrome). I'm neither an expert nor a patient. I'm just a friend of the cause hoping to do a small part to raise awareness.
CFS was the original term for the disease and, as it suggests, one of the symptoms is long-term, chronic fatigue. It's been described to me as similar to having the flu, but it never gets better. 'Myalgic' describes the muscle and body pain associated with the disease. 'Encephalomyelitis' represents inflammation of the brain likely caused by an immune response. Patients also can have memory loss, headaches, and vertigo. Many report depression or other mental illnesses that often come from living with a disease chronically. It's still called a syndrome because scientists and doctors don't yet know the underlying cause (just like doctors once couldn't explain the various symptoms and immune deficiency that came with an HIV infection, so they called it a syndrome, AIDS). There is a broad range in the severity of the disease. A significant portion of patients with more severe symptoms are no longer able to work and some end up spending most of their time in bed. Some people recover to regain their past lives. Unfortunately, some do not. From my experience, they are all special individuals who don't take the small things in life for granted.
There is a decent chance you've known someone who has or has had some form of the illness. ME/CFS affects millions of people worldwide (~1 million in the United States and 250 thousand in the United Kingdom alone). Yet unfortunately, the awareness of the disease by governments and the medical community has been low. Considering how many people have the disease, funding for research has not been adequate. Until more recently, doctors were not sufficiently trained to recognize the disease or worse, that the disease existed at all. ME/CFS is perhaps one of the last diseases where modern science and medicine do not understand the cause. I'm confident the cause, and then a targeted treatment, will be discovered. With awareness on the rise, we will get there faster.
If you would like to know more, I suggest reading this New Yorker piece by novelist and ME/CFS patient Laura Hillenbrand. If that link doesn't work, try this transcript or search for other reprints by searching for: "A Sudden Illness - How My Life Changed" by Laura Hillenbrand. You can also check out this mini documentary and page from the Open Medicine Foundation.
Be a light. This was the slogan for an ME/CFS awareness campaign organized by a dear friend.
