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!
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.
Discuss the article on the Forums.

Dr Judy Mikovits speaking in Belfast on 22 May

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Kate_UK, May 10, 2011.

  1. Kate_UK

    Kate_UK Senior Member

    Messages:
    232
    Likes:
    228
    Dr Judy Mikovits will be speaking in Belfast on Sunday 22 May, 2pm - 5pm.

    Dr Vance Spence from ME Research UK will chair the meeting.

    The event is free of charge, patients, doctors and scientists all welcome.

    Full details here http://www.facebook.com/event.php?eid=206783316009602 (You do not need a facebook account to view this page, it is open to all.)
  2. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Wish I could go Kate - how lucky we are to have her twice - (with Iime May Conf)
  3. acer2000

    acer2000 Senior Member

    Messages:
    571
    Likes:
    201
    Did anyone go to this? Updates?
  4. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,330
    Likes:
    1,762
    London
    The only thing I have heard is that Dr Vance Spence was too sick to make the meeting. Dr William Weir was going to step in. No other news on how the meeting went. If I see it I will post it here.
  5. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
  6. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Thanks eric - what a difference the WPI have made for us in the UK over this last weekend. (GPs noted by their absence)
  7. Sasha

    Sasha Fine, thank you

    Messages:
    7,857
    Likes:
    6,242
    UK
    Wow! From one of the slides: "Inflammatory [cytokine] signature resolves with antiretroviral treatment". Very interesting. But I suppose that even that isn't proof of a retroviral infection - presumably ARVs have all sorts of effects on all sorts of stuff (just as I was reading on another thread that antidepressants have antimicrobial effects).
  8. Trooper

    Trooper Senior Member

    Messages:
    105
    Likes:
    1
    UK
    Looked very good, thanks for posting the link to the pdf eric! Encouraging stuff :)
  9. Daffodil

    Daffodil Senior Member

    Messages:
    2,776
    Likes:
    759
    if i ever adopt a girl i swear i will name her judy
  10. pamb

    pamb Senior Member

    Messages:
    168
    Likes:
    20
    Edmonton, AB, Canada
    thank you for posting this and thanks for such a super report. John's last few weeks have been very tough with pain and seeing this helps us both hope and hang on - just awhile longer.

    I'm too old for kids, but my next cat, should there be one, will be Judy. Thanks for a great idea Daffodil. Judy truly is an angel.
  11. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,330
    Likes:
    1,762
    London
    I don't care what the underlying problem is, just as long as we find a way of curing this disease or controlling these symptoms. Been over 25 years of trying different things for me now.
  12. Bob

    Bob

    Messages:
    7,949
    Likes:
    9,868
    England, UK
  13. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    You're welcome. Sasha, i think the slide you saw is about Dr. Snyderman. In case people don't know who he is, he's an MD with ME/CFS and also a form of leukaemia. He began treatment with ARVs and documented those changes in his markers. I agree it's very interesting (don't understand it though, of course), but i think we also have to see it's only one case. So we need bigger studies... On Jamie Deckoff-Jones' blog sometimes there are letters and comments by Dr. Snyderman.
  14. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    264
    Long Beach, CA
    I don't know about that; are you sure you'd want a cat with Judy's fighting spirit? I think it would be a handful to manage! I can just picture the reaction you'd get when you said "Judy! Get down off of that shelf!"
  15. Bob

    Bob

    Messages:
    7,949
    Likes:
    9,868
    England, UK
    Yes, and everyone would tell you that it wasn't a cat that you had, but it was obviously a mouse... So it would get very confusing.
  16. sensing progress

    sensing progress Senior Member

    Messages:
    296
    Likes:
    9
    Tucson, AZ
    One of Judy's slides was regarding HGRV/XMRV treatments and says: "restore/improve methylation capacacity" and "restore & maintain normal glutathione levels". Is she working with Rich Vank now?? I do not remember seeing that mentioned before as possible treatments.
  17. pamb

    pamb Senior Member

    Messages:
    168
    Likes:
    20
    Edmonton, AB, Canada
    That is too funny. touche Bob.

    And yes, Sensing Progress, I noted the methylation capacity as well and it gave me great hope. It seems perhaps, slowly, a map for treatment is being revealed. Perhaps it is not too long before one can be tested, find out one's own flavor of ME/CFS and then embark on treatment that will most likely be effective. What a concept - after 30 years +
  18. Sasha

    Sasha Fine, thank you

    Messages:
    7,857
    Likes:
    6,242
    UK
    Thanks, Eric - I saw several lines on the graph and hadn't realised it was several markers from one patient, not one marker from several patients.
  19. Sasha

    Sasha Fine, thank you

    Messages:
    7,857
    Likes:
    6,242
    UK
    I noticed that too - it's the first time I think I've come across it being mentioned in the context of other approaches and as you say, it would be great if all this stuff could be joined up and we'd have some idea of what would work for individual patients and why.
  20. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    741
    Hi, sensing progress, PamB, Sasha and the group.

    I'm very happy to see that Judy is continuing to mention glutathione and the methylation cycle as treatment. She mentioned this in her talk in Santa Rosa, CA earlier this year, too.

    I first met Judy at the 2007 conference of the IACFS in Fort Lauderdale. She was already very knowledgeable about methylation from her earlier work on viruses and cancer. Since then we have interacted some more. Both she and Jill James told me some time back that they were working together to study a possible link between the retroviruses and methylation in autism. She mentioned it to me again at the WPI open house a while back.

    I do think all of this is coming together. I don't yet know whether the retroviruses are a contributor to lowering glutathione and blocking the methylation cycle in ME/CFS, or whether they benefit when other stressors have done it, or both. But there definitely appears to be a connection. As usual, we need more research! In the meantime, lifting the methylation cycle block, which automatically builds glutathione in most cases, is a good thing to do for lots of reasons. My response to Judy's talks is, "Amen!! Preach it, sister!!"

    Best regards,

    Rich

See more popular forum discussions.

Share This Page