wabi-sabi
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I've been thinking about this a lot lately, since hopefully we'll have one soon...
My thoughts are informed by having two different things (both ME/CFS and PTSD) because the meaning of a biomarker is so contextual.
As a person with ME/CFS, when I think about a biomarker I want 1) something that will make my disease objectively real, something that will conclusively prove that I am not lazy, crazy, malingering, something that other people can see, recognize and grasp as an explanation. 2) something that will point the way to a cure and give scientists and doctors a handle on how to fix me. 3) an explanation of WHY! and HOW! this happened for myself. Even after all this time, there's still a part of me that thinks I must be making all this up or that I somehow brought it on myself. Seriously, how can all this suffering be down to bad luck?!
As I person with PTSD, I emphatically don't want a biomarker for PTSD. I'm not sure anyone's looking, so probably no worries. I have PTSD because of bad stuff that happened. I'm afraid that identifying a biomarker would imply that my response to the bad stuff was in error. That is, that my PTSD is caused by an internal weakness, a deficiency in "suck it up" rather than an injustice. (Sort of similar to some people thinking fibromyalgia is sufferers just being too sensitive and not having "real" pain.) I'm afraid a PTSD biomarker would put the blame on me, rather than events.
Ironically, the reasons I want a biomarker for ME/CFS are similar to the reasons I don't want one for PTSD.
What do you think?
My thoughts are informed by having two different things (both ME/CFS and PTSD) because the meaning of a biomarker is so contextual.
As a person with ME/CFS, when I think about a biomarker I want 1) something that will make my disease objectively real, something that will conclusively prove that I am not lazy, crazy, malingering, something that other people can see, recognize and grasp as an explanation. 2) something that will point the way to a cure and give scientists and doctors a handle on how to fix me. 3) an explanation of WHY! and HOW! this happened for myself. Even after all this time, there's still a part of me that thinks I must be making all this up or that I somehow brought it on myself. Seriously, how can all this suffering be down to bad luck?!
As I person with PTSD, I emphatically don't want a biomarker for PTSD. I'm not sure anyone's looking, so probably no worries. I have PTSD because of bad stuff that happened. I'm afraid that identifying a biomarker would imply that my response to the bad stuff was in error. That is, that my PTSD is caused by an internal weakness, a deficiency in "suck it up" rather than an injustice. (Sort of similar to some people thinking fibromyalgia is sufferers just being too sensitive and not having "real" pain.) I'm afraid a PTSD biomarker would put the blame on me, rather than events.
Ironically, the reasons I want a biomarker for ME/CFS are similar to the reasons I don't want one for PTSD.
What do you think?