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!
Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
Discuss the article on the Forums.

German study finds xmrv

Discussion in 'XMRV Research and Replication Studies' started by bel canto, May 18, 2010.

  1. jspotila

    jspotila Senior Member

    Messages:
    1,074
    Likes:
    609
    Can you share your source for this information, DysautonomiaXMRV? I don't recall this stat being discussed at the CFSAC meeting.
     
  2. hvs

    hvs Senior Member

    Messages:
    292
    Likes:
    0
    This is exactly right. This is why I don't sweat BS studies and personal/political squabbles and all the rest. CFS will consigned to the dustbin in the coming years by folks in lab coats who don't give a hoot about "cfs" and aren't out to validate anybody's personhood.
     
  3. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    15
    Yes I know that, I was responding to earlier comments by other posters that feared transmission through air.
     
  4. Kati

    Kati Patient in training

    Messages:
    2,111
    Likes:
    1,738
    It's almost time for a name change and I certainly hope that the CDC won't have the honor to get it done.
    :victory::victory::victory::victory::victory::victory::victory::victory::victory:

    Hang on people, we're almost there !
     
  5. Adam

    Adam *****

    Messages:
    495
    Likes:
    1
    Sheffield UK
    That's cute Kati. All those little freaky M & M people thingies in a row. :tear:


    Here's some more.



    :victory::victory::victory::victory:
     
  6. Robyn

    Robyn *****

    Messages:
    180
    Likes:
    0
    I still think they should have a blood ban even if it is temporary until this is figured out. Look what happened with HIV? But of course they're not in much of a hurry to admit (that because of their negligence), the public has already been allowed to become infected for the last 25 years. With my working in a Public Health Building I have seen what can be done. Just take H1N1. It had my whole building hopping for months. There were daily news conferences and recommendations to the public. Then H1N1 turned out to be not much worse than the regular flu. Believe me the government, especially the HHS can make things happen. I have been sending them letters daily with any new information in hopes that someone will take notice. I think we all should because they have to respond to our questions and concerns. It is their job.
     
  7. The date? It was from this forum, because 'the blood guy' (from memory) said he was going to 'report back' in June (or he said it on the video I think).
    The guess work on % rates? (NB: I said I was presuming in my post, lol) someone posted XMRV was detected in a CFS American study by PCR at around 0.1%? (an America patient reporting on an unpublished XMRV study). From my muddled memory I think they said just 2 people were positive!

    So I thought based on this, the CDC was also using PCR method also and not WPI Culture method. Hence my presumption that Jerry whatshiname during the CFSAC meeting said conflicting data was coming on XMRV. My XMRV PCR was negative too as were so many other people's that VIPdx scrapped it. I do dearly hope the CDC used WPI culture method though and didn't mess the findings up for political reasons (As happened with Elaine De Frietas and her CAV virus).

    My apologies for presuming. From the sad CDC performance ''we don't want to scare the public'' at the CFSAC and refusal to ban blood, I am (again presuming) the chances of the CDC replicating the % incidence of XMRV in the WPI/Japanese/German studies are low. It would be a pleasent suprise to be proved completely wrong by the CDC and they are moving forward with robust science, rather than throwing a spanner in the works for another two decades. I guess once bitten twice shy.
     
  8. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    Thanks for that nice analysis Dr. Yes.

    What a huge find - somebody actually finds XMRV! Sweet. And apparently using different methods than the WPI - that just makes it sweeter (and the XMRV finding stronger).

    My guess is that there isn't a problem about it being an opportunistic virus. I actually think this strengthens XMRV case in CFS. That depends on how immuno suppressed these patients are vis--vis chronic fatigue syndrome patients. We talk all about the immune problems in CFS but it is true that a number of immune abnormalities that consistently show up in CFS are not that large; there's RNase L (which the research world has ignored) and NK cell problems and some others but its nothing like immune problems that show up in AIDS. Some researchers on our side talk about mild immune dysfunction - they're not really impressed by the degree of immune dysfunction in all. Others think the dysfunction is much more problematic.

    In any case could the immune dysfunction be six times worse than the immunocompromised patients? I wouldn't think so. Then why is it apparently showing up in such large large amounts in CFS patients and in such smaller amounts in patients the medical profession in general really does consider immunocompromised?

    An opportunistic virus wouldn't do that. A virus that somehow targeted CFS patients would however.

    I think the gap is too large to say that XMRV just 'tagged onto' CFS. I think based on this that XMRV is still a special problem for CFS patients and that it just happens to be in immune compromised patients (along with whatever other pathogens they have) - as well.

    If they'd found it in 60 or 70% of those patients maybe we'd have a problem but when it's still so much more prevalent in CFS I don't think we have a problem. It does make things more interesting...and just shows how interested in XMRV researchers are - they're looking for it all over the place and hopefully we'll have many more studies coming out and we'll have to work through each one of them.

    For me the big news is that someone found it - and that means (unless they made some weird mistake) that the three negative studies are history......
     
  9. jspotila

    jspotila Senior Member

    Messages:
    1,074
    Likes:
    609
    Thank you for the clarification! My recollection is that there are two "CDC" studies. One is the work done by the CDC's retrovirology lab, but there was no report on that study by Dr Unger or anyone else at the CFSAC meeting. The other is the blood safety study that Dr. Holmberg described at the CFSAC meeting, which involves CDC + FDA + WPI + NCI + Blood Services Research Institute. Holmberg said that this study was working to standardize detection methods, and results were expected in June.
     
  10. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    15
    Yay :) we survived another round in the xmrv rollercoaster...
    More to come though: the first study that shows pathogenic capacities of xmrv; the first study to prove That xmrv is the cause in cfs, the first study creating an effective medicine, the first study effectively treating patients ...
    I'm stocking up on chaomille tea !!!

    Great to have you all in these exciting times :)
    :hug::hug::hug:
     
  11. Esther12

    Esther12 Senior Member

    Messages:
    5,379
    Likes:
    5,880
    More good news. It's a bit of a roller-coaster, this here real-time science watching.

    I don't think we should get too carried away though, we've not had anything published linking XMRV to CFS since the Science paper. I feel like I'm only just starting to realise how long this might take.
     
  12. serenity

    serenity Senior Member

    Messages:
    571
    Likes:
    3
    Austin
    these are exciting times, can you imagine how lucky we are? i mean yes ok we went decades of our lives with no answers, but some died never knowing what we now know. future generations will never know how lucky they are to just get a diagnosis & be treated, bless them.
     
  13. kwietsol

    kwietsol

    Messages:
    40
    Likes:
    0
    DysautonomiaXMRV, I am delighted you are back!
     
  14. How kind kwietsol, if only we were married I'd do the washing up for you!!! Then you can introduce me to your folks and we can do wheelchair races down the I-95
    I must let you know though, other than my psychiatrist I've been having eye's on someone else. But there is hope!

    (I am still obsessed with having a Cort's lonely hearts group on this forum where wonderful things happen. Hopefully we can all go on Dr Oz in 2012, cured of CFS ME and preferably before the end of the Mayan calendar).

    My new friends? Well I see a strong relationship blossoming between myself and the mods if this is allowed, and yes I'll wear diamond encrusted slippers and remember CFS is a spectrum disorder on the first night to the cinema. I promise. :> In time I may learn how to spell, make the bed, and even cook. There is a future with 'team' Dys and the mods or anyone else for that matter.

    Corts lonely hearts group, I like this idea but we must be quick. (Cannot be 'toasting' a recovered CD3 count as a giant meteor takes out the CDC and the galaxy). P.S don't watch disaster movies if being previously diagnosed with paranoia. Seriously. My neighbour's been eating my meals for the last 6 years as I'm convinced I'm being targetted by the Noth Koreans. He thus suffers from permanant bloating, yet a spin off is we're getting free boxes off pepto-bismol at trade price. Now about that XMRV......
     
  15. Hi, thank you too. :Retro smile: I think my brain is confused as you correctly remind me the 'blood guy' is not the same study as the CDC + the good guys (which I now remember). I found the post on the forum I was on about with the low XMRV % rate at last! Something to do with 'Abbott'? But now I see Abbot isn't a doctor doing a study but a company. :innocent1: Thanfully I got something vaguelly correct and didn't get this research mixed up with Kg/$ for potato harvesting. (That'll be next week).

    Hence my cynical view if Abbott Diagnostics are at 0.1% the CDC would be also. :ashamed: All conjecture of course. :tongue:
     
  16. bel canto

    bel canto Senior Member

    Messages:
    194
    Likes:
    185
    not to worry, dys - this forum is about as forgiving on memory lapses as you'll find anywhere!
     
  17. lululowry

    lululowry Senior Member

    Messages:
    103
    Likes:
    0
    Athens, Georgia
    Thanks for yet more perspective on this new study Cort.

    :victory: Other folks found XMRV and WPI is not alone! :balloons:

    All viruses seek to replicate, right, so it's a question of understanding exactly how xmrv does so? (Please excuse me if I sound very basic, I am just trying to understand this)

    So surely researchers have to ask what makes CFS folks different than everyone else if the XMRV rate is so much higher with us?

    Or is it why did we all get XMRV and is that why we have CFS?

    Or am I just as dumb as a sack of rocks?:tear:
     
  18. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    (((((Dys)))))

    :hug:

    Peace out,

    Koan
     
  19. _Kim_

    _Kim_ Guest


    I think they look like Oompa Loompas


    oompa_loompa..jpg
     
  20. Lynn

    Lynn Senior Member

    Messages:
    303
    Likes:
    54
    Hi Esther12,

    It seems to me that the linking of CFS with XMRV will become less important as more research is done. I don't think we need to even know that XMRV causes CFS. It just has to be shown that XMRV can cause illness. Then if you are diagnosed with XMRV (which 98% or more of us might be) than we can start ant-retroviral treatment. So based on these assumptions my plan is:

    1. Get tested for XMRV as soon as there is a reliable test.

    2. Wait until it has been determined that XMRV causes illness (which should be relatively simple given all of the people with CFS out there).

    3. Contact a Doctor who specializes in Aids patients to get the latest anti-retroviral combinations. It will be good to go to a Doctor who doesn't care whether I ever had CFS!

    It sounds kind of simplistic and of course research will have to be done to find the best treatment but this is what I am hoping for.

    Lynn
     

See more popular forum discussions.

Share This Page