5 ms·
Skepticism is required for your comment. There are scammers, sure. There are also incompetent (or just lazy or ignorant) doctors. Bad diagnoses are made. Thing
by brianstorms 12y ago
Skepticism is required for your comment. There are scammers, sure. There are also incompetent (or just lazy or ignorant) doctors. Bad diagnoses are made. Things happen.
But the fact remains that the disease, a very complicated disease with no direct simple cause and no direct simple cure (let alone treatment), exists. A large part of the problem is there is little money in it, from the medical industry's perspective. Not a large enough "market" of sufferers. Not a large enough business opportunity for the pharmaceutical industry. Not a large blip on the radar of the health insurance industry who don't give a damn. Not a large enough concern for the NIH and other government agencies. And so the money doesn't flow. And that means a lot of research doesn't get done. And CFS/ME stays on the "fringe", and a lot of mainstream doctors in Kaiser and other big systems don't know how to or don't want to deal with CFS/ME, because it doesn't show up on their checklists, it's too nuanced for them to bother with, and the patients are sent "out of network" (read: they're on their own).
And so it goes.
Finally, I would beg to differ regarding no viral or bacteriological signatures for CFS/ME. More than a decade and a half of direct experience with a loved one with CFS/ME suggests that there is, based on evidence shown of viral markers revealed in exotic, hard-to-get blood tests (read; insanely expensive, not-covered-by-insurance) that most labs won't even do.
- cpncrunch 12y agoHave these "insanely expensive" tests been validated? According to the published research, there are no viral markers for CFS, so I suspect you might have been bilked by a quack.
- blennon 12y agoThere is some evidence for viral markers of CFS [1-3]. [1] http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0085387 http://journals.plos.org/plosone/article?id=10.1371/journal.... [2] http://www.ncbi.nlm.nih.gov/pubmed/?term=15113035 http://www.ncbi.nlm.nih.gov/pubmed/?term=15113035 [3] http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0047891 http://journals.plos.org/plosone/article?id=10.1371/journal....
- cpncrunch 12y agoRegarding the third study, it could just be EBV reactivation. That seems the most plausible explanation, given that some studies find no EBV in patients.
- jpravetz 12y agoI'd agree with that. I'm of the pretty firm belief that CFS and a bunch of other autoimmune disorders are of a parasitic origin. This pretty much sums up my knowledge on the subject: http://www.iadvocatehealth.org/protozoal_infection0.aspx#.aspx http://www.iadvocatehealth.org/protozoal_infection0.aspx#.as...
- tomhoward 12y agoI downvoted this before I read your comment below, which indicates you know much more about this topic than is evident from this comment. As someone who has been battling something that seems to fit the description of CFS for several years, I agree with you that it is largely a psychosomatic condition, and the success I'm now seeing in overcoming it has coincided with a lot of work I've been doing to overcome emotional traumas and self-sabotaging beliefs. That said, I have seen studies that show a correlation between CFS symptoms and active infections of several viruses including Epstein-Barre, Cytomegalovirus, and Human Herpesvirus 6. These viruses are present in most people but dormant - whereas they are commonly found to be active in those diagnosed with CFS (along with MS, Aspergers's, Alzheimer's and other auto-immune conditions). I was tested for EBV and CMV (HHV6 wasn't available at the lab I went to) at the time I started to feel significantly better, and was found to have evidence of previous active infections of both, but neither were active at the time of the test. From all the research I've done, the mechanism seems to be: prolonged emotional stress/trauma -> weakened immunity and/or auto-immunity -> fatigue and illness as infections take hold and body tissue is damaged by auto-immunity. So I guess you're right in the sense that there is no single bio-marker for CFS, but there are correlates that can help to support a diagnosis. As for treatments, well I haven't seen any practitioners offer anything convincing. So maybe your comment was totally valid after all.