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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Autoimmune Fatigue Syndrome AIFS leads to CFS and a promising diagnosing tool

Discussion in 'Latest ME/CFS Research' started by fla, Dec 1, 2010.

  1. fla

    fla Senior Member

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    I suspect my CFS diagnosis has an autoimmune component due to my autoimmune history. Any other people here also have a history of autoimmune disorders? This paper sounds interesting.

    "Some patients with AIFS later develop chronic fatigue syndrome (CFS), and most of them are positive for anti-Sa."..."These results confirm that the Sa antigen is LEDGF/p75. The ELISA assay using recombinant LEDGF/p75 could be a promising tool for measuring anti-Sa and consequently for diagnosing CFS."

    http://informahealthcare.com/doi/abs/10.1080/08916930902736663?journalCode=aut
     
  2. zzzz

    zzzz

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    Had Grave's disease at the pretty much the same time as I came down with CFS
     
  3. drex13

    drex13 Senior Member

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    Columbus, Ohio
    Hey, look you guys are from the same place.
     
  4. HowToEscape?

    HowToEscape? Senior Member

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    What a confounding category. There are probably several different ways we arrive in the "CFS" bucket.
    It could be different causes leading to the same general malfunctions
    different causes leading to differing physical malfunctions but with similar symptoms
    different tributaries leading to a common pathway - such as being susceptible to some odd retrovirus
    most cases have the same root cause or
    ehh... brain's running out....

    But since intensive large scale research hasn't been done, and in official top level quarters there seems to be hostility toward people with this disease(s) we don't know. If a test targeting one cause is developed, what happens to people who have the same debilitation for still unknown reasons?
     
  5. fla

    fla Senior Member

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    Montreal, Canada
    I agree, CFS is like "rough idle" in cars which can have dozens of causes but the human body is orders of magnitude more complex than a car.

    To me, CFS feels like sickness behavior (the energy-conserving immune-enhancing state for a body mounting a short-term, all-out attack on an invading micro-organism) is maintained in the on state perpetually. The immune system may be prompted to tell the brain to perpetually turn on sickness behavior by an actual invader like XMRV, by an IBS stricken permeable intestine leaking bacteria or for autoimmune folks no actual invading micro-organism may be required. Since innumerable causes may trigger the perpetual sickness behavior state, no study can ever find the common cause which results in the scientific community at large to even stop trying to help.
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i feel that cfs is an immunodefiencey disorder with our lymphocytes, natural killer cells etc working in a dysfunctional way, although our lab readings maybe normal, they wouldnt pick up how they actually function. This is how we get 'bug of the month', some of us end up with ebv or cmv or one of the other herpes virus, others pick up a chronic case of mycoplasma or lyme, the list just go's on when it comes to infections and then there can be multiple infections as well. Why do we have this immunodefiency????? maybe it just could be a retrovirus causing this whole problem. I do know that i have been helped treating these co-infections and using strategies to help my immune system, plus meds for that unobtainable sleep.

    cheers!!!
     
  7. WillowJ

    WillowJ Senior Member

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    I have positive ANA, and Rayndaud's, but no other rheumatic disease can be found. Other than ME, of course, which defies standard tests.
     
  8. fla

    fla Senior Member

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    I just saw this older thread posting an interesting article about a possible autoimmunity cause to CFS. The article is too long and complex for me to understand especially in this state. There does seem to be some serious science linking autoimmunity and at least some CFS sufferers.
     
  9. Cort

    Cort Phoenix Rising Founder

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    I think the case for autoimmunty is growing. The CFIDS Association tried to get two grants approved to examine autoimmune processes in CFS last year, one of which, iff I remember correctly, suggested that an initial infection triggered an autoimmune process. Both were denied but the really intriguing thing was all the different institutions, some of which have never been associated with CFS, to partake in the planned study.

    I just talked with someone who was diagnosed with rheumatoid arthritis when she was 8. Four decades later she still hadn't any swollen or disfigured joints and she realized that she probably had CFS. She responded very well to antiviral treatment and is much better now.

    There's also the Rituximab connection...that drug is used for cancer and autoimmune diseases and it has helped some people with ME/CFS.
     
  10. Anne P

    Anne P

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    During 30 years if CFS/ME I've also been diagnosed Lyme disease and 4 years ago Addisons disease.
     
  11. August59

    August59 Daughters High School Graduation

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    Upstate SC, USA
    Why were the grants denied? Is this another example of the stigma associated with CFS? Does a disease name have a lot of influence in the approval of grants and if this is the case the ME name would be detrimental to an autoimmune grant?

    Let the CDC have the term CFS and do what they want to with it. Let Mikovits, Singh, Ruscetti, Montoya and etc.... get together, or even the BWG, to come up with a name that fits the biomarkers, NK dysfunction, inflammation, cardiac, vascular, endocrine and etc....

    I think the term ME has been tainted by the CFS name. We are spinning our wheels in axle deep mud as long as our cause is associated with CFS!
     
  12. Mark

    Mark Acting CEO

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    The tentative label 'autoimmune' does seem to run across many or all of the conditions implicated by association...but what 'autoimmune' really means is pretty much unknown. However: XMRV, if written into immune cell (B-cell) genetic code, is now 'a part of us' - so when it then replicates in response to co-infections that activate the immune system, in those same B-cells, it enables an 'ordinary' infection to become chronic by undermining the immune system when it is active. In that sense XMRV would be 'autoimmune' in that it's attacking, or rather assisting in the chronic provocation of, the immune system, which causes persistent over-activation such that the body 'attacks itself' - and since XMRV is part us now, having infected our DNA, where it is doing this it could be said to be kind of half-right to call it 'auto'-immune, because the XMRV both is and is not part of us, when it plays its role (with co-infections) in maintaining an inappropriate immune response.

    At least, that's what this paper may suggest...

    http://forums.aboutmecfs.org/showthread.php?9805
     
  13. free at last

    free at last Senior Member

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    Thats exactly what ive been hinting at recently Mark over active immune response with xmrv as the antagonist, producing a sort of auto immune response, some organs may also start to be attacked in this immune activated confusion. theres lots of indications for the this not least joint pains. My daughter who is 12 has just had a swelling ( and lump ) come up on her wrist, we are still in the process of finding out whats going on, so i cant say much yet. but i cant help wondering about xmrv and this auto immune idea. she hasnt been tested, for xmrv. and does not at present have cfs. but you can see why im worried. if this disease gets her ill lose all hope. i really feel for those on here whos family are affected as i know there are on here. Judy is going to crack all this im sure of it. i feel shes only just beggining, and learning some really persuasive science.
     
  14. highwaykind

    highwaykind

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    Hashimoto about 2 years post CFIDS. (thyroid tested a bunch of times before, then all normal, thyroid meds make no difference when it comes to the CFIDS symptoms)
     

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