The name might change...but will anything else?

Discussion in 'Fibromyalgia Main Forum' started by bibbbyk, Feb 5, 2007.

  1. bibbbyk

    bibbbyk New Member

    Adopting ME/CFS as the name appears to be a wise and reasonable step for several reasons, which have already been noted.But will anything really change? As long as this
    illness/syndrome remains diagnosed by a process of exclusion, I predict it will remain in the same "wastebasket" category to which it has always been relegated. There must be standardized, widely accepted and agreed upon diagnostc testing involved in the diagnosis before any respect is shown by the powers that be. For the sake of discussion, I propose that the following tests, coupled with an appropriate clinical history, be used as a
    "ME/CFS Test Battery":

    Natural Killer Cells
    RNase-L
    Krebes Cycle

    Although we are obviously dealing with a heterogenous patient population, significant subsets of ME/CFS patients have consistently been shown to receive abnormal results on these tests(esp the first two). These results are from reputable labs, and available to Insurance Companies, Disability Evaluators, employers, spouses, doctors, and all others who doubt this illness is "real". They might not be true biomarkers that are specific only to ME/CFS, but abnormal results on 2 (or all 3) of them, COUPLED with an appropriate clinical history, might prove difficult to ignore to any doubters that something very real is going on here. I believe a diagnosis of Lupus, for example, is arrived at by a specific battery of lab tests. Individually
    none of them mean that much, but abnormal results on a certain number of the tests(out of all the ones given),combined with the pt's symptoms, then result in a positive diagnosis. I propose a similar model be used for diagnosing ME/CFS. The key though, is that the test battery used must be widely adopted and agreed upon, and very specific.The guidlines for a positive diagnosis must be
    clear cut. It would be great for this same group that was involved with the name change, to direct their efforts at establishing the final version of the test battery to be adopted. I realize that a wide range of abnormal lab results can occur with this syndrome. I realize not eveyone will receive abnormal results on the 3 tests I suggested. But a SIGNIFICANT subset probably will, and it is time for this subset to move forward as an identifiable group. Patients not fitting into this subset, might be found to fit into other subsets, which might be identified by their own unique set of laboratory findings/test results. But I believe we have to start somewhere, as little respect will be forthcoming as long as this syndrome is diagnosed the way it is now. And that means effective treatment will be much slower in coming. Any thoughts? (sorry for the lack of paragraphs)

    -zzron
    [This Message was Edited on 02/06/2007]
  2. bibbbyk

    bibbbyk New Member

    I did some additional research on how Lupus is diagnosed. What is typically used is the "Eleven Criteria of Lupus",
    which consists of a combination of both symptoms and specific lab findings. It was devised by the American College of Rheumatology. A person must meet at least 4 of the 11 to be diagnosed with Lupus. I believe more than ever that a similar type of model could be used for diagnosing ME/CFS. There ARE some specific lab findings that seem to occur across most of the various ME/CFS subsets. It is crucial to use sound judgement and wisdom in selecting which specific lab findings would be used in the ME/CFS model. For instance, I have read that over 90% of the population will test positive on antibody tests to certain viruses such as Epstein Barr. It is pointless to include these on the test panel. Countless other findings only occur in small subsets of CFS patients, and it would therefore be unwise to include them. NK Cells AND RNase-L are examples of tests that a LARGE majority of ME/CFS seem to receive abnormal results in, but that the population at large does not. There are other possible candidates for the test panel also, but these two should absolutely be there.
    VERY careful consideration would have to be given as to which tests are included.

    The bottom line is this....you can change the name all you want. Unless the method of diagnoses is standardized, using specific laboratory findings as a crucial part of the process, NOTHING is going to change folks. No respect. No increases in funding. NO CURE. I am very surprised that so few seem to realize this, or to even care.
    -zzron
    [This Message was Edited on 02/06/2007]
  3. bibbbyk

    bibbbyk New Member

    Thanks for reading stovetop...it is nice to receive some support. I have posted the same idea on another board, and am hopeful the idea might catch on if enough people see it.
    I might also try to email Rich Carson, founder of this board. I may be whistling in the wind, but I feel strongly
    enough about the situation that I have to speak up and float this idea out there. I am certainly open to any suggestions you or others might have. It would be great if a panel of respected experts such as the ones that were involved with the name change could get behind this idea...as a matter of fact that is probably what it would take to turn it into a reality.

    -zzron



    [This Message was Edited on 02/06/2007]
    [This Message was Edited on 02/06/2007]