Hi astroman --
You make some good points, and ask questions that would require far more than the space and time here to respond to.
There are those who claim that fibro is a completely separate condition, but most medical researchers agree that it falls under the umbrella of myalgic encephalomyelitis, encompassing the subcategories of fibro and CFIDS. Individual expression of the symptoms sway the direction to one side or the other. There is a movement to eliminate the nomenclature of the subcategories (primarily because the term "chronic fatigue" trivializes the condition) and move back to the broader ME.
Lyme is similar, but it is the result of infection. Since there is also conjecture that ME can be triggered by HPV infection and also some other viruses, such as West Nile, in addition to mold and (most importantly, in my opinion) formaldehyde, it becomes clear that the broader issue is an immune system overload. The similarity of symptoms is a result of the fatigue associated with immune breakdown, and, in the case of ME, autoimmunity.
There are some key tests to narrow down a diagnosis for ME, but it also requires the observational skills of an experienced doctor...as well as an informed patient. The doctor can only interpret what the patient realizes is important, and tells him. Some of the more important tests are CD4/CD8, ESR, and TH1/TH2, although the latter is performed in very few labs nationwide.
Further complicating a diagnosis of ME is the fact that there are different stages of expression. A mild form of CFIDS may only involve fatigue, while a full-blown example (like my own) involves food intolerance leading to GERD and IBS, arthritis, and acute headache -- with a host of annoying secondary symptoms.
There are websites out there discussing ME/CFIDS, but I really don't like any of them for various reasons. I have my own website (see www.healingwell.com/community/default.aspx?f=15&m=3786409
, with a focus upon identifying a key problem and managing the condition to live a full life. This is my main beef with researchers focusing all their efforts towards categorizing and diagnosing illness to the nth degree -- they miss the point of medicine, which is to treat illness.
I encourage others to become their own advocate (as you have done), but to also focus on the practical aspects of regaining one's health. Don't constantly label yourself as having a certain disease. Recognize that there is a health challenge, manage it, and move ahead with your life. We already have missed much of life either under the crushing symptoms, or enduring some of the medication prescribed to ease symptoms. Don't waste more time researching the condition beyond what is required to regain your life.
Key to all this is nurturing a sense of hope and joy, and refusing to let a diagnosis, or overwhelming symptoms, corrupt one's optimism. In my experience, labels and poor planning lead one down the wrong path. It is also impossible to regain health when a disease becomes a means to make one a martyr in front of family or friends. As Dr. Phil would say, "What's the payoff?"
I share your experiences with doctors just wanting to get you out the door with maybe a prescript
ion, or an order for expensive tests. Part of becoming your own advocate means you already know ahead of time that the doctor is agreeable and experienced. Don't walk cold turkey into any doctor's office. That's an invitation for disaster, or at least disappointment!
Just my two cents...