Brooke hosts this very new blog, intimately sharing her experience as a person with myalgic encephalomyelitis (M.E.) who is currently in hospice care, or, more bluntly put, expected to die from the disease within six months.* That is her current situation, but she is also a person who loves dogs, languages, poetry, nature, and music. Regarding those interests, I feel like I just wrote an explanation about myself! I’ve enjoyed her few new posts ranging from recaps of who she is and has been, facts about the disease, and how hospice care can be of real benefit. I feel she has a valuable perspective and I expect however many entries to follow will continue to be enlightening and authentic. I also admire her idea to start something new when some might raise the idea of it being “too late”–her choice to express herself is testament that we are always, always evolving. In the entry I’ve chosen to reblog here, she explains the huge detriment of calling Myalgic Encephalomyelitis “Chronic Fatigue Syndrome,” the harm it has caused patients, and how that ever came to happen.
♥ a rainbow at night
“ME is not CFS. By CFS, I am of course referring to the diagnosis Chronic Fatigue Syndrome. Everywhere you go, you see the two names combined. Many patients themselves abbreviate their illness as ‘MECFS,’ ‘CFS/ME,’ etc. This is incorrect. Doing so hurts literally hundreds of thousands of people around the world. Let me explain.
“Myalgic Encephalomyelitis got its name long ago based on what experts saw in patients with the disorder, as well as the autopsy results of many of these patients. What the autopsies showed was inflammation of the brain and spinal cord, deterioration of the dorsal root ganglia, and more. The name Myalgic Encephalomyelitis means ‘muscle pain and inflammation of the brain and spinal cord.’ It’s a perfect fit. In 1969, the World Health Organization (WHO) recognized this fact and officially classified Myalgic Encephalomyelitis as a neurological disease.
Then the US got involved. In the 1980s, there was a breakout of ME in the Lake Tahoe area. The US sent a couple people to investigate. These individuals refused to meet with any patients, look at blood samples, or do anything productive. … There was not one single experienced ME expert on this panel. Rather than call the illness by the name already recognized by the WHO, the US came up with the name Chronic Fatigue Syndrome. This is where the two names became linked. “Read more
via Documenting M.E.