May 12th is Myalgic Encephalomyelitis awareness day. M.E. is a debilitating disease for which there is currently no treatment. 25% of patients are so severely ill that they are bed bound and in need of constant care.
Awareness is needed to promote research into this little known disease that affects millions worldwide. M.E. does not show up in routine blood tests, and is often diagnosed by eliminating other, similar disorders: M.S., heart failure, cancer, etc.
In my case, I was diagnosed in 2014 when a series of tests ruled out asthma, anemia, cardiac, or COPD as the reason for shortness of breath, dizziness, and severe fatigue after exertion.
Other symptoms include rapid heart rate, IBS, sore throats, odd headaches, difficulty performing routine cognitive functions (brain fog), and widespread pain and inflammation.
I am fortunate to have a husband whose patience has kept him at my side, and I often think of those who live alone with this tragic disease. Who feeds them, shops for them, keeps their house, gets them to medical appointments, etc?
Children, teens, men and women can suffer from this disease, and it is estimated that up to 80% of people suffering are not able to get a diagnosis, due to ignorance on the part of the medical community.
Recent research into the cause of M.E. indicates that it is a dysfunction of the mitochondria – cells that do not produce enough energy to fuel the body’s systems. This feels self-evident for those of us who suffer from the disease.
Money is desperately needed to fund more research and to educate medical professionals about the care and treatment of this little known disease. Millions Missing Canada is the Canadian branch of the movement to draw awareness to M.E.
If you or someone you love has M.E., please share your experience. Awareness is always the first step towards change.