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 on it and the
treatment options f into focus.
Thank you. (2005)
Recently a blog
Bringing the Heat and a
Forum package
have added much more interactivity to the site. The Phoenix
Rising Forums with the premium VBulletin package quickly became the most popular
ME/CFS Forums on the internet. Other substantial additions to the site are in
progress.
Thanks to Lynn Bousquet for creating the Logo for the Forums
