Here's a slightly modified version of a post I made on a recent NYT blog:
I suspect that the next several months are going to be interesting ...
I hear in Dr. Klimas comments (and in the comments of many other researchers over the years) that one of the real problems with a CFS diagnosis and research is that of statistical noise, much of which is caused by competing diagnostic criteria.
I know for myself, there is some anxiety that an XMRV (or other) link will be found, a test and treatment will be developed and that I will test negative even though my health issues began with a severe infectious episode (enlarged nodes, sever fever, etc.), and I have numerous classic co-infections (as well as a litany of other classic CFS findings).
Being involved in research, I know that regardless of whether or not I eventually fit into the first large group of patients to be diagnosed with a blood test, a finding such as a causal link to CFS helps everyone by getting rid of at least some substantial portion of the noise in the CFS data. When this happens, those left out of the newly defined group will start to look a bit more homogeneous and they will therefore be relatively easier to study, understand and to help.
I think of myself as being insufficiently diagnosed more than I do a CFS patient. I have more than enough documented health problems but still no global explanation for everything and I hate perpetuating the CDC's notion of 'CFS.' This so much more than fatigue.
Regardless of whether I am found to be with those lucky enough to finally have an answer, I will have mixed feelings because I know that there will be some who (I?) must continue without knowing. How will I react if, on that day, all that I am left with is the knowledge that the path to my answer is still unknown but now a bit less obscure?
Above all, I would hope that CFS patients, more than most, can appreciate how difficult it is to not know and to be civil towards each other along the way.