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 and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
Discuss the article on the Forums.

Article: Mikovits Era at WPI Ends - The WPI Makes the Right Move In Letting Chief Researcher Go: An

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Oct 5, 2011.

  1. SOC

    SOC Senior Member

    Messages:
    5,364
    Likes:
    6,445
    USA
    I'll tell you about one:
    My daughter is in complete remission after receiving what you call "insane" antivirals. I don't consider her a "poor person"; I consider her a fortunate young woman who got her life back instead of losing it to this disease as so many patients have.

    She's not the only one. If you are genuinely wondering, and not just talking for the heck of it, you can find other stories just by doing some reading here at PR.

    PS. Antivirals don't kill viruses. They stop them from replicating. You can learn more about antivirals here, as well.
     
    leela likes this.
  2. SOC

    SOC Senior Member

    Messages:
    5,364
    Likes:
    6,445
    USA
    Funny, the two researchers I mentioned that statement to had the same response. The stated very vehemently that such a position was extremely unethical and that patients should attempt to find out who this individual is and report them to the funding agency.
     
    currer likes this.
  3. liquid sky

    liquid sky Senior Member

    Messages:
    367
    Likes:
    199
    So Cort, who was the researcher that refused to approve any grants that involved Judy? Maybe you could do the right thing and turn them in?
     
    markmc20001, SOC, currer and 3 others like this.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,397
    Likes:
    4,789
    australia (brisbane)
    The antivirals i have taken were just a placebo effect, i feel better because its all in my mind, the improved lymphocyte sub set count and natural killer cell function is just coincidental, i could get the same effect from doing the PACE trial stuff, mmmmmmm??????????????????????????
    People who know me from here can tell my statement is 100% sarcasm.

    Im amazed that people can make these statements without apparently doing any research. There is plenty of empirical evidence out there that cfs/me has an infectious component, is it a 100% cure for everyone, well no, but it helps alot of people.

    cheers!!!
     
    Enid and OverTheHills like this.
  5. SOC

    SOC Senior Member

    Messages:
    5,364
    Likes:
    6,445
    USA
    Amazing, innit, how some people can know sooooo much without apparent research. I've had to do years of reading and listening and I still can't speak with the degree of certainty we hear from some recent newbies. It's been so very, very educational around here lately with all the wizards dropping in to instruct us. :rolleyes:
     
    OverTheHills likes this.
  6. leela

    leela Slow But Hopeful

    Messages:
    2,457
    Likes:
    3,021
    Couchland, USA
    Yes, heaps, isn't it nice to know someone cares enough to show sympathy for poor you. Oh no wait, that wasn't sympathy, that was
    wondering. In the neuter. One wonders. About the poor people.

    I propose: wonder in private, and let grown adult ill people make informed decisions about their own bodies, over which they have ultimate sovereignty.
     
    OverTheHills likes this.
  7. leela

    leela Slow But Hopeful

    Messages:
    2,457
    Likes:
    3,021
    Couchland, USA
    @ Ian, it occurs to me that according to the rules of the forum, it is not acceptable to mock or denigrate patients' treatment regimens.

    You are entitled to your opinion that there is no need for anti-virals in the treatment of ME, but please don't declare to "the poor people" that their treatment choice is "insane." I suggest you moderate your own own post to reflect the conclusion you have come to without insulting the patients who have come to their decision perhaps at great pains and after lengthy deliberation.

    I have not flagged your post for moderation though I do believe it qualifies as out of bounds. I leave it to you to reconsider and adjust accordingly.
     
  8. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,530
    Likes:
    2,075
    London
    It's obscene given that I lost friends in the early days of HIV/AIDS who didn't have access to AZT and other drugs. Since HIV/AIDS patients have had access to ARV drugs and the doses / combos have worked out I've lost no one else. HIV/AIDS patients fought to have the drugs released. There weren't too many sit-ins and demos asking for free dentistry.

    Personal experience of actually seeing how ARV's would make Ian's ideas really weird. I wonder how much first hand experience he has in this. My HIV+ friends work and have a social life - I've got nothing.
     
  9. Andrew

    Andrew Senior Member

    Messages:
    1,977
    Likes:
    1,267
    Los Angeles, USA
    Yes, I think it's important that the NIH act on this. If a panel member is willing to blackball a scientist for being provocative, who knows what else they are blackballing for.
     
  10. undcvr

    undcvr Senior Member

    Messages:
    797
    Likes:
    133
    NYC
    I can tell you about a third:

    Since having being tested positive for EBV through DNA PCR RT Quali and not by any other ridiculous 'can't really tell if past or present infection' lab test method, I have been on insane AVs and ARVs, sometimes ones that are not indicated and sometimes, for the heck of it, more than I should be on at any one time.

    I have had CFS for 15 years now, consistent twice a year flare up of hairy leucoplaky and days and days of continuous PEM just from walking round the block.

    I have been on AVs for almost a year now and am back to working 20hr + weeks as well as being physically active over the summer about 2hrs 2 times a week. In fact so physically active that I was sidelined due to a physical injury, a first for me, and not because of an illness or fatigue issue.

    For me, for those with virallly (CMV, EBV, HHV6) induced CFS, pple like Montoya and Lerner are right on the money.
     
  11. Tristen

    Tristen Senior Member

    Messages:
    613
    Likes:
    425
    Northern Ca. USA
    A common, acceptable, and fairly accurate use of medications within the medical field, is diagnostics. Says a lot if people respond to ARV's.
     
  12. Daffodil

    Daffodil Senior Member

    Messages:
    2,923
    Likes:
    895
    und i didnt realize u were positive for EBV by PCR. so you definitely had an active infection, then. i never had that evidence..only stupid IgG antbodies :-/
     
  13. paddygirl

    paddygirl Senior Member

    Messages:
    163
    Likes:
    20
    Dr M in Ireland

    I'm just back from the Tullamore Ireland conference at which Dr M spoke. She got a great reception even though some of the audience didn't know anything about XMRV.

    This is the third time I've seen Dr M speak and she was in flying form, very relaxed and very open to questions. I'm happy to report that the she will be continuing with her research. A member of the audience was upset for some reason due to definitions of illness, nothing to do with Dr M or XMRV- the audience were perplexed as to why, and Dr M handled it very gently and diplomatically. If I ever doubted it, and I don't, this scientist definately has our back.

    Reading between the lines it seems (to me) that she is taking all the flak in her considerable stride and is philosophical about it. And undeterred.

    Paddy
     
    Lou, Roy S, Enid and 4 others like this.
  14. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,128
    Likes:
    3,398
    N. California
    Thanks for the firsthand report. There's nothing like the REAL THING. Great to hear!
     
    Enid likes this.
  15. leela

    leela Slow But Hopeful

    Messages:
    2,457
    Likes:
    3,021
    Couchland, USA
    Yes, Db, Ain't nothin' like the real thing! Thank Paddy :)
     
    Enid likes this.
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    Marco, I totally agree!

     
    leela likes this.
  17. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    841
    UK
    Thanks paddygirl - great to hear Dr M is carrying on her not inconsiderable work with ME in her stride and philosophic about recent events.
     
  18. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    I am confused. I thought the theory had moved on from 'XMRV' to 'HGRVs'? Did Mikovits say anything about the BWG and how 'XMRV' was not discovered and perhaps offer an explanation? I guess though some journalist might cover this talk and we can read all about it in due course.
     
  19. undcvr

    undcvr Senior Member

    Messages:
    797
    Likes:
    133
    NYC
    I don't believe in bad press. So what Mikovits did, XMRV, donated blood 'contamination' issues etc, I am grateful to her. It has raised the profile of ME/CFS considerably.

    Do you know how big it is to get someone like Lipkin to work on CFS ?? It's Huge.

    But when those contamination issues came up she should just have admitted to it instead of asking us to wait because another study was coming up to clarify the contamination mess. Well those studies never came and by that time she was beginning to look like all she wanted to do was lie to protect herself.
     
    Firestormm and Sam Carter like this.
  20. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,530
    Likes:
    2,075
    London
    Undcvr

    The studies did come but they were never published. That is where the bottleneck is.

    Dr Mikovits did not lie to the UK group when an independant group took bloods here and then sent to 2 non-WPI labs in the USA. Results were returned to the 50 subjects and Dr Mikovits spoke about the results at a conference.

    She found HGRV's in this group.

    Dr Beiger presented the results of his own German trial (with a Virologist at a german university) at the Invest in ME conference but he has not published.

    Dr Maureen Hanson presented her own results but once again has not published.

    The contamination was caused by Dr Silverman and has nothing to do with the WPI.
     

See more popular forum discussions.

Share This Page