The CDC on CFS...today! Sheesh - who's side are they on?

Discussion in 'Fibromyalgia Main Forum' started by goingslowlycrazy, May 27, 2003.

  1. goingslowlycrazy

    goingslowlycrazy New Member

    I found this on the CDC's website TODAY while looking to see what they had to say about CFS.

    I accept that some of these things are not diagnosic (ie some people with cfs show positive for them and some don't) but I feel that to actively discourage any testing for them is a very 'head in the sand' attitude.


    Having almost finished reading 'Osler's Web' though - I shouldn't be surprised...

    As for their comments on the Tilt-Table test - I thought that some Insurance Companies asked for it as 'proof' of cfs - did I get that wrong?


    Anyway - see what you think...maybe I'm just getting bitter and twisted LOL

    I have inserted some paragraph breaks to make it easier to read...

    Theoretical and Experimental Tests

    A number of tests, some of which are offered commercially, have no demonstrated value for the diagnosis of CFS. These tests should not be performed unless required for diagnosis of a suspected exclusionary condition (e.g., MRI to rule out suspected multiple sclerosis) or unless they are part of a scientific study.
    In the latter case, written informed consent of the patient is required.

    No diagnostic tests for infectious agents, such as Epstein-Barr virus, enteroviruses, retroviruses, human herpesvirus 6, Candida albicans, and Mycoplasma incognita, are diagnostic for CFS and as such should not be used (except to identify an illness that would exclude a CFS diagnosis, such as mononucleosis).

    In addition, no immunologic tests, including cell profiling tests such as measurements of natural killer cell (NK) number or function, cytokine tests (e.g., interleukin-1, interleukin-6, or interferon), or cell marker tests (e.g., CD25 or CD16), have ever been shown to have value for diagnosing CFS.

    Other tests that must be regarded as experimental for making the diagnosis of CFS include the tilt table test for NMH, and imaging techniques such as MRI, PET-scan, or SPECT-scan.

    Reports of a pathway marker for CFS as well as a urine marker for CFS are undergoing further study; however, neither is considered useful for diagnosis at this time.

    look forward to your comments
    hugs
    Mary x
  2. Bacci

    Bacci New Member

    Goingslowlycrazy. I chose this icon for your comment on how they must "have their head in the sand" and you are right!It's amazing how they have set up a system in which we just can't win! I mean, every doctor, insurance co, disability rep etc wants proof of the illness. So, we take all these tests and maybe come up with one or two positive results. Then they say that these results don't mean anything when we get them. Well, then why do we have these tests in the first place?! I don't mean why do we take them, I mean why do they exist if they don;t indicate a darned thing?!!

    I have been dealing with a disability claim for two years and have been denied several times, despite positive tests for various viruses and other things. So, my disability rep who used to work for SS but now works for clients/patients/applicants said that they only true marker they use to diagnose CFIDS is the tilt table. So I did it two months ago and had a major positive. I was so sick from it...and so happy and relieved. Like, yay!! it's proof. Then I read this, as I wait for the letter to arrive in the mail for my next hearing, and feel so mad all over again. How are we supposed to prove anything if they won't let us? I say forget about the CDC and what they say isn't indicative of the disease. Other poeple, (most) will find some comfort in a diagnosis of CFIDS if you have some positive tests in your file.

    Thanks so much for the update Mary!!
    Bacci