This is an extremely important topic but one that I am in no way able to do justice to right now! So I'm reblogging this post from a fantastic blog: http://documentingme.net/2014/01/31/me-vs-cfs-theyre-not-the-same/ It summarises the history of the naming of ME, the difference between ME and CFS, and the damage done to both ME and CFS patients when the two names are conflated. Please visit that page to read the rest of this brilliant and important post. Thank you!
Heads up, folks! This is probably the most important post I will ever write. It’s certainly one I feel very passionate about. It’s also a bit daunting, because I really want to get it right, to write this post in such a way that people will understand the truth in what I’m saying and pass it on. So, here it goes.
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 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. They scanned a couple files, then spent the rest of their trip skiing and relaxing. They returned to their jobs with the official conclusion that there was nothing to worry about. Soon after, the US formed a committee to discuss the illness that caused the outbreak. 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.
However, the diagnostic criteria the US chose to diagnose CFS is very simple and absolutely cannot be used to correctly diagnose ME. In order to be diagnosed with CFS, a person must have fatigue lasting 6 months or longer which worsens after exertion and is unexplained by any other illness (technically this alone should rule out everyone with ME, whose fatigue is explained by a WHO recognized illness).
Please read the rest of this important post at http://documentingme.net/2014/01/31/me-vs-cfs-theyre-not-the-same/
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