New name for ME/CFS/FM? XAND X associated neuro-immune disease

Discussion in 'Fibromyalgia Main Forum' started by Elisa, Oct 8, 2009.

  1. Elisa

    Elisa Member

    Hi All,

    Is XAND (X associated neuro-immune disease) the new name for our illness?

    "WPI researchers have continued their in-depth studies of XMRV to clarify its effects on the human immune system. Scientists at WPI are clinically validating a blood test for the detection of XMRV in
    ME/CFS and other human diseases. X associated neuro-immune disease, or XAND, a new disease entity encompassing ME/CFS, will require additional research funding to find effective treatments for

    The retrovirus is XMRV, known fully as xenotropic murine leukemia virus-related virus,

    The X I believe stands for - "Xenotropic virus: A virus that can grow in the cells of a species foreign to the normal host species, a species different from that which normally hosts it. Xeno- means foreign while -tropic refers to growth. So xeno- + -tropic = capable of growing in a foreign environment."

    It sure seems this is the new name...what do you think?


  2. Elisa

    Elisa Member

  3. AuntTammie

    AuntTammie New Member

    what it is saying is that XAND is a category of disease that could include ME/CFS and other illnesses; not that XAND would be the new name for ME/CFS other words, it's like saying that ME/CFS is a neurological illness; there are other neurological illnesses, so we have not started referring to ME/CFS as neurological illness (or NI) instead of ME/CFS.....XAND basically narrows down the type of neuro-immune disorder even more, but it is still a category that could include other illnesses, as well
    [This Message was Edited on 10/09/2009]
  4. karynwolfe

    karynwolfe New Member

    M.E. already -is- referred to as a neurological illness, AuntTammie. =)

    I think what they did was create a new disease -category-... However, I've also read things like this:

    "Daniel Peterson, MD, medical director of WPI, added, “Patients with ME/CFS (XAND) deal with a myriad of health issues as their quality of life declines."

    "Those with XAND (ME/CFS) and/or fibromyalgia, interested in participating in research studies to further the development of diagnostic tests, should complete the questionnaire available at"

    which suggest they're trying to differentiate between cases of ME or CFS associated with the XMRV, and cases that are not. So it really is confusing. =|
  5. AuntTammie

    AuntTammie New Member

    I knew that it was referred to as a neurological illness, which is why I used that in my explanation.....guess I wasn't that clear, though....I edited it to try to make it more clear[This Message was Edited on 10/09/2009]
  6. karynwolfe

    karynwolfe New Member

    Ooh, that definitely helped make it clearer, thank you =)
  7. AuntTammie

    AuntTammie New Member

    great! : )
  8. karynwolfe

    karynwolfe New Member

    Oh my goodness I wonder what the World Health Organization is going to do about this...

    CFS has to remain CFS, indeed, because it's a syndrome of unknown fatigue. But will "X-acquired neuro-immune disease" replace Myalgic encephalomyelitis? Or will they think of them as seperate conditions? Because nothing can be listed twice in the ICD... Oh dear. This one thing has changed so much! I can't wait until further research is done.

    But the new terminology makes me so nervous: I want an explanation for something THAT ALREADY EXISTS, not the creation of a "new disease" like the CDC did when they "found" CFS even though it was actually M.E.... They took something that already existed, and gave it a new name and new criteria, making things worse for everyone. I don't want that.

    And what will the CDC do about this?! I love how their site has yet to list ANYTHING about this new discovery. (Oh yeah, that's right, they still think sexual abuse causes CFS...)
  9. Elisa

    Elisa Member

    It is the new name...

    “It’s amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives,” Dr. Mikovits said. She has also given the disease a properly scientific new name: X-associated neuroimmune disease.
  10. AuntTammie

    AuntTammie New Member

    In the quote here, "She has also given the disease a properly scientific new name: X-associated neuroimmune disease" it says that XAND refers to "the disease" which would mean that it would be the name for CFS,

    but in this quote, "XAND, a new disease entity encompassing ME/CFS" it says "disease entity encompassing" which would mean that it is a category that includes ME/CFS, but also might include other illnesses, too.
  11. Elisa

    Elisa Member

    "And while I am making rash predictions, let’s talk about the name of this illness. It has been a favorite topic of mine since the "Disease of a Thousand Names." Chronic fatigue syndrome is a miserable name. I think that XMRV is going to turn out to be the puppet-master that pulls the strings of illnesses variously called CFS, ME, fibromyalgia, atypical multiple sclerosis, chronic mononucleosis…. And if it does, the name should be XAND, for Xmrv Associated Neuroimmune Disease. I heard Mrs. Annette Whittemore use this term and it feels right. History."

  12. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    XAND is the illness / infection of XMRV. Since there is some evidence that other neurological diseases may also be linked to, if not caused by XMRV, they made a new name for those sick with the newly-discovered virus.

    I hypothesized that we may end up with XAND-1, XAND-2, or XAND-3, based on how the virus is affecting us (as in fibromyalgia or CFS), or what the symptoms are, or what level of infection we have.

    But we may end up with names such as XAND / CFS, or XAND / Fibromyalgia or XAND / Autism instead of a number.

    Of course, my thought was to name the illness DeFreitas Disease. I liked the sound of it. It also is easy to remember. (It sounds like "the Fritos Disease".)


  13. spacee

    spacee Member

    Cause that is my last name. I doubt it goes that way but if it did, I would probably go back to my maiden name. It would be too much to bear!

  14. karynwolfe

    karynwolfe New Member

    I could vouch for that, Tina. They can't just call everything "XAND" because the symptoms of everything and the treatments for each disease are very different and research would once again be ruined. But maybe it'll be treated like other illnesses (diabetes, multiple sclerosis, autism spectrum) which have different subsets based on what "form" of the illness they have.
  15. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    How funny, Spacey.