How about - you say you understand but your actions don't convey a real understanding
Hi Kelly,
First, I agree that pinning everything on XMRV/MLV's is a mistake but there is nothing wrong with demanding that it be fully investigated. Based upon past actions, patient concerns that governmental agencies will not approach the tasks at hand with all the necessary urgency or vigor are understandable. However, this is not 1991 and XMRV/MLV's are being looked at by too large a group of researchers, both privately and publicly funded, so that even if it wanted to, the gov't (CDC/NIH) wouldn't be capable of simply dismissing the possibility of a connection out of hand. That said, if this was all left in the hands of the CDC's CFS department, the XMRV/MLV question would have already been cast aside as just another noxious waste of their precious time and energy.
My point is, governmental agencies have worked hard to earn our distrust. Anger may not always serve us but neither has sitting around and waiting for someone else to take this disease seriously.
You also wrote (my bold):
Most scientists, including Dr. Le Grice and Dr. Houghton, are merely expressing their point of view which because they are scientists is most likely much more informed than most patients.
I have to say that I could not disagree more with your presumption that scientists are likely much more informed that most patients (on this site and on the web in general - I'm adding these qualifiers as I'm assuming that this is your audience).
I have had a number of personal communications with several top CFS researchers and to a person they had a unique view but in no way was their view more informed than that of many patients. Researchers seem particularly unaware of other research in the field. Only a hand full appreciate the history of this disease and a large majority of the newly initiated have found the complete disarray surrounding issues such as cohort definitions nothing short of bewildering ("how can you possibly study something when you can't even agree upon what that something is?").
What most researchers bring to the study of CFS is a depth of knowledge in their particular area of specialization but to an astounding degree, they lack of an appreciation of work being done outside of their narrow specialty and what it is like to live day to day (let alone those moments when we have to navigate and are at the mercy of the medical/insurance/disability systems) as a CFS patient. There a very small number of clinician/researchers who I would exclude from the ranks of the uninformed but my list would not include Drs. Le Grice and Houghton.
