Monday, March 21, 2011
Biological Causes by Amy Dockser Marcus
No sooner do I finish considering one article by Amy Dockser Marcus than she has published another one. This journalist is really pushing the ME/CFS story along. This time the article seems to me to be much more focussed and readable. Personally I like seeing the name of Dr. Jose Montoya and that of the Utah group, two of the relentless researchers in this illness. Serious information is presented here, leaning on the various approaches scientists are taking. Particularly helpful is the effort from many directions to find an infectious agent - which many people have known is there, and for many years now. It is about time for a serious effort to identify the agent or agents. The character of the illness points to a retroviral involvement. Noteworthy amongst them is XMRV and its family of retroviruses. Dr. Montoya will consider other pathogens -HHV6, EBV - until they lead him to something else. He is open to suggestion, and it is just a matter of time. He is a terrific clinician/researcher.
Amy Marcus was a little weak on the disease definitions, leaving out a very important piece -the Canadian Consensus Criteria. When this is applied, the diagnoses is not vague or mysterious. When this is applied many negative XMRV studies would not exist. She also leaves out the development of cytokine/NK cell panels that clearly determine a pattern of profoundly dysfunctional immune systems in these patients. At least three different places are working on these arrays. I think it is also important to emphasize that people can get better - but they do not "get well". Personally I never could understand this "waxing and waning" idea, as it is like many illness - they cycle. This "symptom" is not helpful in characterizing these patients.
Personally I look for these articles to be "useful" to me and my daughter - and I deem this one to be so. What this means to me is that I can send it out to everyone that I know, knowing that it will add in a mostly positive way to their growing involvement with this illness. Some months ago I decided that I was tired of people dropping me off their schedules (as if I were dead) and not being able to understand or seemingly be interested in what my daughter is going through. Dropping the anger, I decided to contact everyone I know - family and friends - and give them the "short skinny" on ME/CFS - and, perhaps most importantly, to set them up for future information, as this disease drama unfolds. Incidentally I also used this "educational" effort to solicit modest gifts (for the Whittemore Peterson Institute) from family and friends, about 100 people so far. The results have been surprising, and I will write about them soon.