SITE PHILOSOPHY
Does the world need
another CFS web site? General information on CFS, treatment plans, discussions
with doctors, data on support groups etc. are all readily available on the
internet. There seems to be a lot of information on CFS on the web. Given the
scope of the disease and research into it, however, there is little, and that
which is available is often haphazardly presented. Research updates leave
the interested but poorly informed layman tantalized but unclear as to their
potential significance and the issue soon fades into the recesses of memory – a
dangerous situation for any CFS patient. That, at least, is my experience
.
The inadequate state of knowledge of CFS research on the web is not surprising given the complexity of a disease that effects the immune, central nervous, sympathetic, cardiovascular and endocrine systems as well as the muscles, metabolism etc. Attempting to grapple with this grab bag of difficult subjects can leave the CFS patients feeling mentally frayed, exhausted and dispirited. One is hardly able to muster any hope regarding the resolution of CFS if its issues are impossible to understand
The RESEARCH portion of the website grew out of conversation I had with a friend who stamped her foot and said “If I had this thing I’d learn everything I could about it”. Never mind that she was an aspiring medical student or that my knees felt weak every time I cracked a medical text, what she said made sense. After many years of dealing with this disease I had become frustrated with how little I actually knew about it. At the time I was fully engaged with school work. Not long afterwards, however, CFS and a severe case of MCS left me with a long period of enforced rest that proved to have a silver lining. Not only did I have the time but the rest allowed me to recover some of my faculties; those medical texts that looked too daunting in the past only looked daunting now. I became convinced that it was possible, given enough time, resources and and a certain level of health, to build a coherent view of CFS and the research being devoted to it.
This website then is my attempt to bring CFS and the research devoted into it into focus. It will grow- slowly or quickly depending on how many people contribute to it - into something of a library that CFS patients and interested parties can access in order to get overviews of particular areas of CFS research. I invite any frustrated researchers out there or any one desiring to know more about CFS to join with me in building this website. To investigate contributing to the research section of this website click on Submit a Paper.
The Tell Your Story section grew out of several factors; one was my sense that telling ones story only provides a release for the teller but also provides valuable information to other CFS patients. It gives those without this disease a chance to learn about it. Telling your story also documents the journey that anyone with a 'controversial' disease makes at this particular point of time. As such it has some importance in a historical sense. For whatever reason - please consider telling your story on this website. Thank you.