totally agree Joey...
Those are the most famous and well-known doctors, not necessarily those with the highest success rates. Many CFS docs do not publish or do research. They just practice. Take Mike's doctor as an example.
I've seen a number of doctors on that list. Doctors that publish or research are much more likely to see their current protocols through. Although Cheney is now doing stem cells and CSF, he spent years telling us to re-breathe our own carbon dioxide. Chia is still really into enteroviruses, and I would wager that only a small subset of CFS is caused by enteroviruses. Lerner is still relying largely on antivirals and now ABx since he is treating lyme disease. Holtorf tries to cover all the bases, and I get the feeling that although superficially he is holistic, that's only because he appears to cover all the biochemical holes in the body. Many patients feel better, but they quickly relapse after they can no longer afford his exorbitant treatment plan.
So my point is: many of these doctors' reputations precede them. They have all helped the CFS community make strides toward finding the cause in their own ways, but don't get discouraged if you cannot travel or afford to see them.
I couldn't agree more. While some of these famous docs may have had some success with some patients, many of them seem to be well known simply because they were the "first" on the scene (in recent history anyway), were courageously outspoken during the that period, and/or are quite possibly just great at self-promotion and seminars. Additionally, it seems like many of these big names have become quite rigid in their own theories and treatment protocols because, and at least in some cases, their egos may have gotten in the way, preventing them from even considering the alternatives, pun intended.
I've posted the following many times on other forums...but not here: Our local CFS/FM support group has about 35-40 members, perhaps more. Of those, I personally know 6-8 people who are substantially recovered, and 5 of them are 100% and have been so, for anywhere from 2-8 years.
Three of the men have been back to work for years, one woman has gone back to school, and the other has just finished training in a mind-body protocol that helped her get unstuck from her 2 year 75% plateau, to 95% -- and her MCS completely disappeared as well. She was sick for 17 years. And another woman, who is retired and in her mid to late 60's, (and who I believe considers herself at about 90%) hikes during the summer, and cross-country skis during the winter.
Only ONE of these recovered patients saw a couple of the names on Cort's list (in the second post in this thread), and those doctors were not the one that eventually helped her the most. The rest of my friends saw a variety of local M.D.s, but mostly local naturopaths, who helped them
help themselves get well.
The one M.D. with a decent success rate here is a man who treats CFS/FM as being the result of multiple stressors -- physical, chemical, environmental, emotional trauma, etc., -- which eventually cause the immune system dysfunction and systemic inflammation, which then sets up the possibility of chronic bacterial, viral, fungal, etc., infections. It's his opinion that the infections won't clear up until the immune system becomes balanced, and that doesn't happen until these (possibly) hidden initial stressors are addressed. Not sure if he'd want to be interviewed (for the same reasons Mike's doc is off the radar), but I could ask him.
His approach makes sense to me, because there must be a reason (or reasons) why our immune function gets so screwed up. Almost everyone in this country has many of the viruses we may have, but they don't become chronically ill for years or sometimes decades. And often they don't even get sick in the first place despite the presence of these 'bugs'. One of his key points is that we may not even be aware of the stressors that might be involved that lead to becoming chronically ill.
He is somewhat well-known within the local area, but doesn't toot his own horn. And as mentioned above, most of the docs have been naturopaths, or an integrative M.D./N.D. approach, with
patient responsibility (i.e., pacing, 'active resting', 8-9 hours of sleep, and even some of the so-called 'woo-woo protocols like Gupta and EFT, etc.) playing a huge factor in lasting recovery.
Even Cheney (quoted in an NCF article) when asked how many of his patients had recovered, replied
"None". But now he says with his new protocol, his 'success rate has doubled'?
???
That took an hour to write! So now it's time for a break.
Dan
