To: rkrw who wrote (16117 ) 3/11/2005 7:31:26 PM From: zeta1961 Respond to of 52153 <FMS> I have no doubt that it is real...My mom may have it and I suffer of CFS...but from very different 'causitive axis' and on a different point in the spectrum of severity..this book, published in 2002 by a social worker in Oregon, is a recent read..written for patients and physicians, points to the latest scientific evidence in detail..cytokine role, neurotransmitters(serotonin, et. al.)and much more Interestingly, she mentions Enbrel and Ampligen among others as promising agents in early trials.. Quite frankly, I've been of the mind set that if I just live my life and de-emphasize it, any of the psychologic component will go 'poof'..no way..of many examples, I had a delightful all day outing yesterday and today I am paying for it...also, because I have just low levels of HepC virii circulating(the original causative agent), I've at times talked myself into believing, would have preferred that my symptoms are psyche induced..intensive therapy, good drugs and voila, gone..No such luck! Quite fascinating, when Jeff was diagnosed, I got better, much better..it's as if I needed to get better for us to survive..it was amazing..new people we met during the course of his illness, were shocked, did not believe it..after his death and the major issues were taken care of, I had a major crash..it was so bad, they worked me up for lymphoma!..I've since recovered much but it remains a challenge and the ultimate balancing act.. Frankly, it was only after it became apparent that my mom may have FMS, that I've become more aggressive in my research(she's a good candidate in many ways..she speaks and reads very little English, takes us at our word when we describe a new medicine for her to take...if placebo effect really had legs, truly, she'd be dancing on Broadway tonight!..I'm afraid that narcotics were/are the only medication that have had a meaningful impact on her pain/sleep/depression..the problem is that the symptoms of this syndrome(pain, insomnia) can become the disease after a while.. I've only heard of ORPH's product but even 'sight unseen' have not been inclined to invest/bet on it..just too many variables in this illness.. PS..on high drop outs in trials, this author points out that because of the fatigue, aches, etc, precludes some from being able to maintain the committment of clinic appts, therefore getting disqualified or dropping out..made sense to me..I appreciate the pointers!..I'll give my doc's something else to chew on/drive them nuts!<g>Chronic Fatigue Syndrome and Fibromyalgia and Other invisible Illnesses, A Comprehensive Guide<i/> by Katrina Berne PhD Zeta