Hello! I know there's a lot of debate in the ME/CFS community about the differences between ME and CFS, especially the difference in severity i.e. those who cannot get out of bed and those who still have the ability to walk and run. Some are arguing that ME should only be used to describe those with the most severe symptoms, I was wondering what your thoughts are on that are. Thank you!
Hey there! I’m of the opinion that CFS is a very dismissive, inaccurate label that’s generally used as an umbrella term by doctors who don’t know what else to call an illness. I’m completely against its usage, I think it only serves to invalidate people suffering from ME (or those suffering from Lupus, Lyme, EDS, Fibromyalgia, etc, who have been misdiagnosed with CFS), and I don’t think it even begins to come close to encapsulating the experience of being chronically ill. For starters it suggests that fatigue is the primary symptom of ME which flat out is simply not true - I could rattle off 30 or 40 separate symptoms that I’ve found to be equally as debilitating if not more so. For seconds it seems to give people the impression that you’re ‘just’ tired all the time, when in actuality fatigue is a very disabling symptom in and of itself.
If people choose to use it to describe their condition all power to them, but I prefer to avoid the label completely and am very much not a fan of having it attached to me. It’s a label that I’ve found very belittling and invalidating over the past 10 years, one that’s done a lot more harm than good.
Edit: I’d also just like to add that I think it’s utterly useless and counterproductive to argue over which illness is worse, and that there needs to be solidarity in the chronic illness community, not conflict. Most of these illnesses have a pretty wide range of severity - Lupus, ME, Lyme, EDS, Fibromyalgia, etc - but they are nonetheless all difficult to live with at any level.