I think we have heard enough about treatment of CFS/ME to be able to cobble together a more complete picture of improved treatment outcomes for our patient set.
CFS/ME sufferers seem to be ailing from at least two separate, easily concurrent conditions.
de Meirleir, has championed the idea of GI dysbiosis, and its related systemic effects; even so far as having developed a table of antibiotics he finds effective against particular bacteria. He has also found cellular mutation of the intestinal wall due to harmful species invasion and developed methods to try and correct both of these issues. How effective, we can only guess.
Cheney, has developed the best theoretical model of intercellular invasion with the resulting inadequate immune response and biological failures. He has developed methods for treating this condition, going so far as creating his own compounds to influence cellular energy and shift immune response to optimal for the invading pathogen.
These men are mavericks, pioneers practicing medicine as it should be. Instead of withholding treatment until peer’s debate the ideas for ten or more years. These men have been implementing possible solutions for their theories just as soon as they can grasp the concepts themselves. Each of these methods is cutting edge knowledge. The problem is, the cost of new information is steep. (Of course we all intimately understand the cost of failed treatments too.) They have certainly based their knowledge in other peoples work. What is encouraging for us is the pioneering of treatment methods to deal with these errors of biological function. Lately the marriage of these two concepts has obviously been creating successful outcomes neither had yet been able to achieve alone.
There are likely other factors not yet discovered, but the treatment it appears we should all seek to date: 1. Aggressively pursue any and all GI dysbiosis. This is where the immune system lives, GI function must be optimized or recovery cannot be achieved. 2. Optimize immune response for the individuals’ pathogenic load.
These two conditions are sides of the same coin. (By the time knowledge is complete, maybe the number of sides on a die.) Healing cannot be approached in our patient set without strict adherence dedicated to controlling and resolving these two biologically monumental influences.
(Finally, I have personally been attached to the hope for an effective single silver bullet cure to my illness. GcMAF may have a place in the arsenal, but given the complexity of the illness, I doubt GcMAF can single handedly correct the extent of our malady. I doubt there is any single approach that can help us. This would explain why we all remain so ill.)
Yes, I agree. The question we have to ask ourselves is when we will have a working treatment. In my eyes XMRV could wipe out the immune system and cause other problems that lead to all the gastro-intestinal-symptoms we encounter. We need more research but things are going into the right direction. I'm very thankful that KDM treats his patients on the experience he has and not on what health care systems say.
Interesting comment of Kofi on IBS and antibiotic treatment:
I suspect this antibiotic acts by impairing MMP-9 [PMID 20045287]. As a
beta-lactam, it may also act via glutamate transporter protein, GLT-1
(EAAT2) [PMID 17122424]. Since rifaximin (Xifaxan) is used for hepatic
encephalopathy, itmight work deeply on the ammonia/glutamate cycle. I
haven't had a chance to examine this too deeply yet, but from my
previous posts you should know glutamine synthesis is impaired in the
IBS gut. This might cause glutamate to back up in the gut.