Occupy CFS is now Occupy M.E.
I thought long and hard about the change, and would like to share my reasoning.
First of all, CFS is a crappy name. We all hate it. CFS is not only a poor descriptor of our disease, but it has contributed to the pejorative view of our disease. How many times has someone said to you, “I get tired too.” Or had an encounter with a doctor who says, “You don’t look tired.” The name CFS and the psychogenic theory attached to it are major contributors in the poor state of clinical care and research.
Second, the National Academy of Medicine (formerly the Institute of Medicine) report concluded, “The committee agrees that the term ‘chronic fatigue syndrome’ can result in stigmatization and trivialization and should no longer be used as the name of this illness.” (p. 227) (emphasis added). I agree.
So why didn’t I go with Systemic Exertion Intolerance Disease (SEID)? Basically, because no one likes it. There’s no momentum behind the name. No one is using the name. And I am not aware of any effort to get recognition of the name as a valid replacement for “CFS”.
Why did I go with ME, when the National Academy’s report said, “the term ‘encephalomyelitis’ is not well supported by the evidence” and does not convey “the full complexity of this disorder.” (p. 227) I chose to stick with myalgic encephalomyelitis simply because it is the best option available at this time. There is a history of its use in the literature, both on its own and as ME/CFS, and has the beginning of acceptance by the organizations and individuals using ME/CFS.
Why not ME/CFS, since that seems to be the most common name in usage in the US? Because it perpetuates the name CFS, and there are huge political and scientific implications for that. I think it is time to make a clean break, and transition to a new name.
ME is not the perfect name. It has downsides. But I think it’s the best option on the table. For years, some advocates and organizations have argued that we should not use ME if the scientific and medical communities in the US won’t use it. The idea was to wait until science understood the pathogenesis of the disease, and that would give us the right name. I used to be one of the advocates who thought we should wait.
Not any more. I’ve waited twenty years, and others have waited longer. CFS has got to go. That’s all there is to it. Of the other options, ME is the best we’ve got. Occupy ME it is.
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The entire Occupy CFS site has been migrated to occupyme.net, and all the internal links have been updated. In addition, occupycfs.com will automatically point to occupyme.net, so you should still be able to find old posts. I’ve tested the site and it all seems to be working smoothly, but please let me know if you find any hiccups.
Nothing else about the blog or my advocacy has changed, except the name. But this is a big change, and its time has come. I hope you approve.