International ME/CFS and FM Awareness Day Is On May 12, 2018
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Are there any forums or groups for people with Chronic Enterovirus?

Discussion in 'General ME/CFS Discussion' started by Frustrated, May 11, 2017.

  1. Frustrated


    Don't get me wrong, I'm really grateful to have such great online spaces for people with ME/CFS in general, but I would be interested in being on some kind of forum or support group for people who know they are suffering from this condition (and/or others) due to this nasty bug in particular, where we can share info etc. I tried looking for FB groups but couldn't find any.
  2. JES

    JES Senior Member

    Likely there are a lot of people suffering from chronic enteroviral infections (CVB4 is even thought to be behind diabetes type 1), I consider myself likely one of them. The problem is that enteroviruses are still poorly understood. There are less than a handful of labs in the world that can accurately diagnose enterovirus infections (in most European countries for example there is no such test offered). So I would say at the moment your best information would come from the various CFS/ME FB groups, among those there are many people that have been diagnosed with enteroviral infections (mostly by Dr. Chia or Dr. Hyde).
    Matt_B, Izola and Frustrated like this.
  3. Hip

    Hip Senior Member

    Enterovirus certainly appears to be a major player in ME/CFS, yet you find that not many ME/CFS patients have actually been properly tested for this virus (coxsackievirus B and echovirus are the two types of enterovirus that are linked to ME/CFS, and which patients are tested for), and there is not a great deal of discussion about enteroviruses.

    Dr John Chia's 2007 study found chronic active enterovirus infections in 82% of ME/CFS patients, and there is a long history of previous studies dating back the 1970s finding chronic enterovirus infections in the muscles, brain and other tissues ME/CFS patients.

    Dr Chia's own estimates (based on patient clinical history) are that 55% of ME/CFS cases can be attributed to enterovirus.

    Yet in spite of these results indicating a central role for enterovirus in ME/CFS, most ME/CFS doctors seem more interested in herpes family viruses than enterovirus.

    Though it should be said that at this point, we don't know if there is any substantial difference between ME/CFS linked to enterovirus, and ME/CFS linked to other viruses such as Epstein-Barr virus, HHV-6 or cytomegalovirus. It could just be the same disease in all cases, just with different viral triggering causes.

    Info about enteroviruses is found at these websites:
    Threads on this forum about enteroviruses:

    Testing for enteroviruses:

    The laboratories that Dr Chia uses for blood testing are ARUP Lab in Utah which has plaque reduction neutralizing antibody tests for coxsackievirus B and echovirus, but cost around $440 each; and Cambridge Biomedical which offers an echovirus plaque reduction neutralizing antibody test for $390.

    Note that it is chronic active enterovirus infections which are hard to detect, and there are very few labs in the world which can diagnose such infections. Acute enterovirus infections by contrast are easily to detect, but the acute phase of the infection only lasts a few days to a week typically, and the acute phase is usually over by the time most ME/CFS patients get around to viral testing.
    Last edited: Jun 9, 2017
  4. Frustrated


    Hey again all I've decided to make a chronic EV Facebook group myself. PM me if you're interested
    Sandman00747 and Hip like this.

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