dorit - I looked up another study that "AL Hassert" did and I am blown away by the outrageous statements about
LD. This is just another attempt to "shore up" the incorrect position of the IDSA that THEY refuse to let go of. They are making this into a physical/mental disorder instead of taking any kind of effort to research an accurate test and treatment for LD.
First they complain that "we" (those of us that 'think' we have LD, or once had LD but no longer do, etc. etc.) keep tiny little detailed records of our symptoms:
These people chronically monitor their symptoms, often documenting changes in detailed diaries that focus on even the most subtle changes in their apparent health status. In this way the overanxious “worried well” can evolve into patients with MUS conditions, in this example, chronic Lyme disease.
And then it goes on to say that "we" can't articulate what we are feeling. I don't know why we can't tell someone what is going on since "we" keep all these tiny little notes about ourselves:
For our purposes, aporia is a state of confusion, self-doubt, and exhaustion! This manifests in patients as an inability to adequately formulate and articulate their complaints, their fears of unknown threats/disease, and their elusive sense of anguish. They are “stuck” and thoroughly unable to deal effectively with their health care needs. Defensive anger stems from the threat of removing their diagnosis; illness behavior in their experience of chronic Lyme disease has become their only fundamentally acceptable “language” for expression of their distress; to borrow a term from the psychology literature, it is their “ego-syntonic” language.
And it ends with a lovely note:
Any attempt to deny these people their diagnosis or access to their chosen physician or their chosen modes of therapy is met with anger, voluble resentment, and active protest.
I'm sick and I want to get well. I do not keep track of "all my little symptoms". I can articualte how I am feeling. I can discern what pain is. And, I don't care what they call it (Lyme disease, Fibromyalgia, CFS, eating cat poop disease, etc.) I just want my life back.