Progress in Diagnosis / Causitve-Factors / Treatment CFS

Discussion in 'Fibromyalgia Main Forum' started by jc16551, Jul 17, 2012.

  1. jc16551

    jc16551 New Member

    Hi everyone,

    I re-vised this forum for the first time in about 10yrs since I had CFS primarily to see if there was any progress in regards to discovering the underlying cause, symptoms, diagnosing, and treating CFS.

    From what I'm reading on the forum, the diagnostic criteria for CFS is still, for the most part, vague and non-specific. Clinically, CFS presents itself with a number of clearly-identifiable physiologically abnormalities, yet this appears to be overlooked both in terms of clinical practice, and also, patient education.

    In regards to the underlying etio-physiology of CFS, we've come a long-way in biochemical research communities, however, there appears to be a large segregation between "objective lab science" and "clinical science" that has lead to a rejection of overall scientific progress in terms of explaining this illness, and the continuation and propagation of poorly-founded "pseudo-scientific explanations" in the clinical environment.

    Last but not least, in light of the fact that a clear diagnostic criteria has not been adopted by the medical community as a whole, this has really mucked-up the waters, so to speak, in terms of formulating effective treatment methodologies that, in light of objective biochemical fact, actually make sense in regards to the treatment of this clearly-identifiable/distinguishable clinical manifestation.

    The reality of the situation is that CFS is a very real condition, that often-times presents itself as a MS & AIDS like clinical presentation in progressive cases, and many-times results in a level of disability that is equal to if not worse than end-stage AIDS or Cancer patients just a couple of months before death.

    The treatment methodologies that I have seen mentioned on this forum... the best way to sum that up would be to ask... how effective would these modalities be in treating/reversing progressive MS? The truth of the matter is that the condition is real, has a homogenous etio-physiology, and requires highly specific treatment accordingly, as is the case with MS, and consuming recommended "alternative therapies" that claim to "cure" conditions that even those making such claims can not define is grossly ineffective if not downright futile.

    The notion that "what works for one person may or may not work for one another." In terms of symptomatic alleviation, this may very well be the case, but in terms of any treatment that has direct effect on the underlying disease process itself, nothing could be further from the truth.

    Unfortunately, the last 30yrs of an essential failure of the medical/biomedical communities to define this disease, this mis-information communicated to patients because of it, and the lack of effective treatment approaches has lead to a separation between medical providers and those afflicted by said condition.

    Providers seem to resent/dismiss/disbelieve their patients, and patients appear to resent/dismiss/disbelieve their providers, criticizing providers for not having an explanation for their illness or a curative treatment, and likewise, condemning practitioners who claim to have an effective means of diagnosis and treatment as well.

    It appears at this stage that moving forward, as defined above, will not occur in the social/clinical politics surrounding this condition, but rather, will occur if and when the interests of bottom-line profitability align with that of definition and effective treatment of CFS.

    In essence, a disease is not defined until "Big Pharma" defines it. And a "cure" does not exist until "big pharma" develops a "drug" to "treat" and/or "cure" it as well.

    Until that happens, there appears to be no effective means for developing an effective means of defining, diagnosing, and treating CFS, and no indication that anything is going to change any time soon.

    As a Physician specializing in Anesthesia & Psychiatry, with nearly 10yrs direct experience with CFS and the CFS community, the situation is most unfortunate.

    I can say, however, that there are two drugs currently under development, ranging from Orphan drug status to Phase III Clinical trials that do have a direct effect on the disease process itself (a disease process that is, de facto, well understood). I can also state with relative confidence that I don't see either drug reaching market in the next 10yrs, if ever, which is highly unfortunate for those effective by this disease process.

    -Dr. Dan