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!
Join the National PR Campaign for ME: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

Dr. Alter Paper embargo ends today at 3:00pm, press conference today

Discussion in 'XMRV Research and Replication Studies' started by LJS, Aug 23, 2010.

  1. Mark

    Mark Acting CEO

    Messages:
    4,528
    Likes:
    2,004
    Sofa, UK
    Thanks biophile you've summed it up great, I was just about to say the same thing.

    Correlation does not imply causation they will say. So rehearsing the response to that seems worthwhile - 3rd known human retrovirus, retroviruses all cause immune abnormalities, CFS patients have immune abnormalities...so come on, it's not proven (nothing ever is) but highly likely.

    And of course it's necessary but not sufficient, it's not a cause on its own, we know that if it's present in healthy controls. But heck, if they've been measuring levels of co-factor MLVs, they might even have nailed the cofactors question in the Alter/Lo paper...
     
  2. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    @Brown-Eyed Girl: No, this means we are closer and closer to a real CURE. WPI is way out ahead on other research studies and can type the immune response (or how ever the medical term is) back to the symptoms - See WPI website for update. WPI is out ahead so I would NOT worry about being shunned. By this time next year you may well be feeling a lot better, if not cured!!
    But do hit your local newspapers with your story so that people understand that anyone can get sick. Go read what Usedtobeperkytina wrote. She has good comments.

    See also
    Human Gamma Retrovirus Test Now Available

    VIP Dx is pleased to announce the availability, beginning Monday, August 23, 2010, of the WPI licensed serology test to detect antibodies to Human Gamma Retroviruses that include XMRV and its variants human MLV-related viruses.

    http://www.vipdx.com/
    Welcome to VIP Dx
    ANNOUNCEMENT: August 23, 2010

    Human Gamma Retrovirus Test Now Available
    VIP Dx is pleased to announce the availability, beginning Monday, August 23, 2010, of the WPI licensed serology test to detect antibodies to Human Gamma Retroviruses that include XMRV and its variants human MLV-related viruses.
    Please contact customer service for more information at (775) 351-1890.
    To order a serology test kit, please CLICK HERE.
    VIP Dx is committed to excellence in quality, service and accuracy and no result will be reported before it has passed our quality assurance guidelines
    To order your serology test kit for Human Gamma Retroviruses, please complete the Kit Order form attached.
    Kit deposit is $65.00.
    All supplies and instructions are in the test kit. Your physician will need to order tests/sign the requisition and provide a diagnosis code so that we can send you a proper statement of services and fees that you can submit to your insurance company.
    All tubes in your kit must be filled and shipped room temperature by FedEx Priority Overnight. We provide the clinical pack envelope and air bill for you to do this.
    No special preparation is required for specimens; ship specimens at ambient (room) temperature. Serum Separator tubes for serology testing must be spun down. Specimens must be received within 24 hours for proper analysis. Collection and shipping instructions are included in each kit along with all required specimen tubes.
    The price of the PCR/culture test is $450.
    The price of the serology test is $249.
    The discounted price for both tests at the same time is $549.
    KIT ORDER FORM – CLICK HERE
    For those who are trying to get preapproval through Medicare or Medicare Advantage plan:

    The CPT codes for:

    serology test = 86790

    culture = 87798
     
  3. LJS

    LJS Insert Witty Comment Here

    Messages:
    207
    Likes:
    7
    East Coast, USA
    I doubt that will be the case, we still know basically nothing about this virus and we have quite a long way to go. This is a great step in the right direction and I am super excited to see the paper but we are not going to be starting treatment in the new few weeks or anything. They still have not proven that XMRV causes disease. I think the big feat of this paper will be that ME CFS will be legitimized as a real disease.
     
  4. Sunshine

    Sunshine Senior Member

    Messages:
    208
    Likes:
    2
    UK
    Hi again. I'd love to know if it's possible to 'catch' new variants of MLV through the cause of the disease we have. In other words are the people 'progressively ill' with ME/CFS having just one MLV, or (gulp) catching other one's somehow and end up with multiple MLV's? Hence some ME patients become extreme cases and die from neuro immune disease (Ganglionitis). :(

    I do think the label CFS will be disolved eventually, because an MLV infection is not an unknown cause of illness (criteria for CFS) as it's a retrovirus.

    CFS and ME could well become part of a family of diseases under the label of HGRV..

    HGRV Type 1 (MLV variant causing immune supression, often found in family members of ME/CFS)
    HGRV Type II (XMRV causing mitochondrial infection and what is Fukuda 'CFS')
    HGRV Type III (XMRV + Multiple MLV's causing CNS inflammation and what is Ramsay 'ME')

    etc etc.......

    It would be fascinating to see if one can 'start off' with 'basic' CFS (e.g. GMRV Type II) and end up with a full blown neuro disease ME (GMRV Type III).
    If only we knew how we actually get these horrible viruses in the first place, then people could take precautions (if there are any) to stop getting other MLV's and making their disease worse.

    There has to be a reason why 25% or so of people get worse and worse.
     
  5. bullybeef

    bullybeef Senior Member

    Messages:
    476
    Likes:
    44
    North West, England, UK
    Possible new name for ME/CFS - Neuroendocrineimmune Dysfunction Syndrome (NDS)

    I posted this elsewhere ealier on today:

    Possible new name for ME/CFS - Neuroendocrineimmune Dysfunction Syndrome (NDS)
    Just for a sake of clarity, the name of this illness has brought a lot of controversy, and currently they are trying to change it to neuroendocrineimmune dysfunction syndrome, or NDS, which better reflects the symptoms of this illness, is not just fatigue


    See more: http://www.veteranstoday.com/2010/08/22/a-review-of-chronic-fatiguemends/ (edited link)
     
  6. LJS

    LJS Insert Witty Comment Here

    Messages:
    207
    Likes:
    7
    East Coast, USA
    Oh wow, this would so sooooooooooo much better then CFS.

    link broken, working link here: http://www.veteranstoday.com/2010/08/22/a-review-of-chronic-fatiguemends/
     
  7. bullybeef

    bullybeef Senior Member

    Messages:
    476
    Likes:
    44
    North West, England, UK
    I would prefer the word syndrome to be replaced with disease. Especially if it is proven contagious.
     
  8. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    Yeah, it's like that I think

    This is speculation so take it how ya want but I'd say that XMRV is not a causally transmitted virus. Sexually, vertically or blood born but not causal, MLV's however come in a variety of shades from what I've read. Some are used in vaccines like Friend MLV and Moloney MLV some in Gene thearpys, it's going to be a real kick in the pants if it turns out that the MLV's used for vaccines are what combine with the XMRV and produce Autism. (Talk about vindication! Geeze I would not want to be a health official on the receiving end of the mama bears that would be an awful mauling.)

    Anyway the way I understand it is that no MLV can be casually transmitted and in a healthy person MLV's clear the system in 7 to 10 days so they aren't a problem. But if I'm reading the Ruscetti's correctly they are proposing the viruses are hookin' up and that's how they are getting by the immune system.

    You have a person who has kid's in school (a real stew pot of virus and bacteria) or a spouse that works in a public place and will pick up virus's and bacteria and bring them back to the ill person's environment and (shrug) well, that person is just going to get sicker and sicker. Add to that the person may not have a strong immune system genetically and it looks like everybody's right.

    BOING BOING BOING BOING BOING BOING​

    I wish the science would hurry up and get published! I'm tired of trying to complete the whole jigsaw puzzle with just three pieces!
     
  9. LJS

    LJS Insert Witty Comment Here

    Messages:
    207
    Likes:
    7
    East Coast, USA
    AIDS has the word syndrome in it, Acquired Immune Deficiency Syndrome, but i agree
     
  10. Bob

    Bob

    Messages:
    8,598
    Likes:
    11,528
    South of England
    I don't understand... I thought the new name was going to be HGRAD (Human Gamma Retrovirus Associated Disease)...
    Can anyone explain? Where has this 'NDS' come from?
     
  11. shannah

    shannah Senior Member

    Messages:
    847
    Likes:
    178
    Agree with bully beef here.

    This may seem naive but why don't they just test us all with the virochip and get to the bottom of it all? Is that not financially feasible?
     
  12. alex3619

    alex3619 Senior Member

    Messages:
    7,501
    Likes:
    12,001
    Logan, Queensland, Australia
    contact your local and national media

    Hi, this measage is equally valid everywhere - no matter what country or continent you are in, a flood of emails will alert the media to what is being announced. For the UK residents, dont forget to email major media outlets throughout Europe! Bye, Alex

     
  13. Bob

    Bob

    Messages:
    8,598
    Likes:
    11,528
    South of England
    Does anyone happen to have a handy list of UK press contacts?
     
  14. alex3619

    alex3619 Senior Member

    Messages:
    7,501
    Likes:
    12,001
    Logan, Queensland, Australia
    Hi LJS, however according to Annette Whittemore (I think) in her speach at the WPI opening, clinical trials are due before the end of the year. Off the shelf drugs might be available immediately, we have to wait and see. Bye, Alex
     
  15. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    Press Contacts: google the newspaper, TV, Cable and find their CONTACT US and then send them the press release and what Tina has said to do. that's what I have been doing. Sending it and some comments as to WHY it is so important all over and to my own local newspapers since what happens in the locals gets picked up by the nationals.

    We all have to hit the big one: ABC, NBS, CBS, MSNBC, CNN, ETC.

    please keep this post bumped to the top so that others can see this post or they won't know what is about to hit.
     
  16. Mark

    Mark Acting CEO

    Messages:
    4,528
    Likes:
    2,004
    Sofa, UK
    Thanks again George i just asked for confirmation that MLVs are known in vaccines on another thread, but you've answered that here.

    Dr Wakefield must be laughing his ass off right now!

    If the truth is as we suspect, then the psychs will probably be a minor footnote in this scandal, sadly - what about the authorities that have persecuted people like Wakefield who are then vindicated? That was blanket condemnation from the whole media, the whole mainstream science lobby - what will the public think of them when it turns out they were all dead wrong? Oh what fun!
     
  17. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    1
    Europe

    Yes, if we don't know where its coming from, or what factors are combining to produce greater severity, we cannot take precautions. For all we know, it might be possible to 'catch' XMRV several times over, literally. Perhaps that is what is happening to some.
     
  18. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    Complicated times two

    Just remember that no MLV is causal transmitted. It must be sexually, blood, or mother to child or via vaccine. Then you got a lonnnnngggg incubation time while the androgen's and cortisol whip up replication and THEN the whole mess is triggered by a common virus.

    (grins) I think we got the market cornered on complicated. But at least it dove tails with the fact that only about 10% of us with XMRV infect actually develope illness. It's a lot of factors that have to come together. Whew.
     
  19. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    406
    Upstate SC, USA
    Wallstreet Advocate

    Has anyone made sure that our friend with the Wallstreet Journal is aware of this annoucement at 3:01? I imagine she knows, but I would hate for her to miss a scoop like this!
     
  20. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    They all know for sure. The CFIDS association is also saying on facebook that the embargo lifts at 3pm.

     

See more popular forum discussions.

Share This Page