1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
Discuss the article on the Forums.

Important Discovery Exposes Autoimmune Nature of ME/CFS - HERVs Implicated

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 20, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    650
    Likes:
    1,017
    View the Post on the Blog

    View the Post on the Blog
     
    zzz, Beyond, CJB and 6 others like this.
  2. Sherezade

    Sherezade Guest

    Messages:
    97
    Likes:
    47
    Wow Joel, you are on top of everything! Thank you for keeping us updated. ;)

    Is curious because i've spent the whole day researching for autoinmune syndromes, because i just got tested for that. That was the only test that my infectologist allowed me to run, based on my symptoms.

    Anyway, every night before going to bed i pray to God to give the scientifics and the doctors, the wisdom to find the true about this disease and the right treatment. No one deserves this. Articles like yours gives me some hope though.
     
    SpecialK82 and snowathlete like this.
  3. alex3619

    alex3619 Senior Member

    Messages:
    7,664
    Likes:
    12,426
    Logan, Queensland, Australia
  4. 5150

    5150 Senior Member

    Messages:
    168
    Likes:
    57
    Re "autoimmune" : how does the very obvious fact(in my cohort anyway) that CFS/ME is Contagious , fit into the HERV implicated theory? I was fine until I was exposed to someone else's really powerful and bad HERV? Because I was just great until that event, after which my life went to hell. So there's an extremely virile contagious HERV out there? and where did it come from? indigenous somewhere? or what. Thanks.
     
    lnester7, snowathlete and taniaaust1 like this.
  5. Mya Symons

    Mya Symons Mya Symons

    Messages:
    859
    Likes:
    179
    Wyoming
    Very interesting article. Thank you. I am wondering a couple things after reading this. 1st, do these antibodies to HERV's have any connection to the strange B-Cell blood test results some of us have (a lot of immature B-Cells and too low a number of mature B-Cells)? 2nd, are these antibodies responsible for some of the confusion with the Mikovitz, Lombardi etc. XMRV studies. Did they mistake these antibodies for a current unknown retroviral infection (in this case XMRV)? Finally, and this is far fetched, is it possible that a person who has many antibodies to several different types and fragments of HERV's could be immune to HIV (as in the immune system would recognize the virus as an infectious retrovirus before it had time to hide and replicate)?
     
    snowathlete likes this.
  6. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,686
    Likes:
    10,093
    Amersfoort, Netherlands
    Autoimmune disease is likely to be triggered in some cases by viruses - such as Coxsackie B being implicated in Type I Diabetes. It's a matter of correlation thus far (more type I diabetics than non-diabetics have had the virus), but it's pretty suggestive.
     
    snowathlete likes this.
  7. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,686
    Likes:
    10,093
    Amersfoort, Netherlands
    Great article, snowathlete - going to link to it so my friends and family have something more comprehensible than the actual research paper to read :D
     
    SOC and snowathlete like this.
  8. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    THanks for the article; lymph is also a connective tissue so it may be just part of the picture where all connective tissue is affected- including the gut... hence immune system involvement.
    There are some who think it is a genetiic condition, so in addition to ymphatic involvement the blood vesssels are also defective and do not constrict adequately to return blood to the brain and heart..
    see this link for more

    http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehelrs-danlos-syndrome-stretchy-veins.20351/#post-310872
     
    snowathlete likes this.
  9. Kati

    Kati Patient in training

    Messages:
    2,110
    Likes:
    1,732
    Well 5150, this research provides another piece of the puzzle, and providing more reasons
    1) for governments to fund research for ME,
    2) for researchers especially in virology and immunology, to be interested in researching us and push a bit further
    3) for physicians to get interested in our disease this much more
    4) for patients to be willing to give a piece of their duodenum for research!!!! :)
     
    snowathlete likes this.
  10. lansbergen

    lansbergen Senior Member

    Messages:
    1,142
    Likes:
    579
    8 out of 12 is 67% if I am not mistaken. Same procent as the Lombardi study. Makes me wonder.

    The authers say they can not exclude an exogenous retro.

    Not the Silverman XMRV but maybe another exogenous.

    Anyway retro's are back in the picture and there is a lot of work to do to solve the mistery.
     
    SOC and snowathlete like this.
  11. lansbergen

    lansbergen Senior Member

    Messages:
    1,142
    Likes:
    579

    HERVs can be activated by another infection.
     
    snowathlete likes this.
  12. ana_bxl

    ana_bxl

    Messages:
    9
    Likes:
    12
    Joel...........THANKS A LOT for explaining it to us in "normal language" :O) THANKS,THANKS A LOT!
     
    Sushi and snowathlete like this.
  13. taniaaust1

    taniaaust1

    Messages:
    8,227
    Likes:
    5,196
    Sth Australia
    Its sad thou that govs will probably need to see a big part of the ME puzzle before they ever will get serious with funding it. But while its all in the too hard basket.. they dont want to fund.

    ...

    I think this discovery would explain the genetic link too.. as after all we are inheriting that so call junk "HERV" DNA from our parents so would have similar DNA.

    Sounds like we may be giving others our secondary co-existing viruses we pick up due to having this.. which in turn could go and actiivate this HERV issue in them too. So an interplay happening between HERV and other viral things be in EBV or whatever.

    I suspect I carry some reacitiving viral things and have issues with what appears to be herpes inside my mouth at times. (I wouldnt be surprised if I have reactiving EBV happening too). Im also carry antibodies to CMV and toxoplasmosis.. so I wouldnt doubt I have reactiving stuff which could trigger something off in others and make them vulerable to the HERV stuff.
     
    snowathlete likes this.
  14. taniaaust1

    taniaaust1

    Messages:
    8,227
    Likes:
    5,196
    Sth Australia
    Oh and thanks Joel.

    I didnt think I'd ever see anyone write a medical article as well as Cort does, when it comes to bridging things and making the medical stuff more easy to understand. You've just filled a big gap ive had with this site since Cort left.
     
    justy and snowathlete like this.
  15. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,686
    Likes:
    10,093
    Amersfoort, Netherlands
    These current results also might explain the prior XMRV results that weren't replicated. The impression I got is that the current results, if indicating an immune reaction to an HERV protein, could explain a false positive showing up for XMRV due to the cross-reactivity. WPI's involvement therefore might have been based on their previous findings being wrong, but then looking at how those false positives could have been produced.
     
    SOC and snowathlete like this.
  16. lansbergen

    lansbergen Senior Member

    Messages:
    1,142
    Likes:
    579
    Yep
     
  17. Gijs

    Gijs Senior Member

    Messages:
    145
    Likes:
    141
    i think this finding is the result of the autonomic overdrive i.e. abnormal stressrespons started by (nor) adrenaline. This finding does not fit in a causal model.
     
  18. lansbergen

    lansbergen Senior Member

    Messages:
    1,142
    Likes:
    579
    I disagree
     
  19. beaverfury

    beaverfury beaverfury

    Messages:
    457
    Likes:
    463
    West Australia
    Is it true to say all autoimmune conditions can only be managed, and not cured?
     
    Valentijn likes this.
  20. snowathlete

    snowathlete

    Messages:
    2,222
    Likes:
    2,710
    UK
    You're welcome. I'm glad you liked it. I'm keeping an eye on your thread about your autoimmune results - very interesting. I wonder how many of us have undergone similar tests?
     

See more popular forum discussions.

Share This Page