1. Patients launch a $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.

You may wonder why the CAA treats XMRV the way they do... So:

Discussion in 'XMRV Research and Replication Studies' started by omerbasket, Aug 4, 2010.

  1. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Cort, I am utterly offended at the comment you made in post 172 about the WPI. Are you deliberately trying to undermine this research? I suggest that you remove the false accusation about myself and the WPI.
  2. bakercape

    bakercape Senior Member

    Messages:
    210
    Likes:
    1
    Cape Cod. Mass
    I don't see

    in any way how V99 accused WPI of doing a quick and dirty study. I hope that was just a bad joke. Utherwise it seems like a kind of quick and dirty little comment.
  3. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,404
    Likes:
    4,133
    Sth Australia
    That is exactly the kind of study that one who believed that CFS was a psychological illness may get funded... if they want to find psychological reasons for our symptoms eg Its in our heads that we are sick and our bed rest deconditions us.. hence we end up with reduced blood volume.
    It makes it look as if "physical causes" are being believed and researched.. but even Wessely may do such a study to help prove our symptoms are due to psychological reasons and the way we act.

    Talking about such things dont mean that Dr Suzanne D. Vernon believes this is a "real" physical illness. If she's on our side of the fence and not Wessely's, i wish she'd make this clear to everyone instead of so often appearing wishy washy.

    I are thou happy about her statement about the negative XMRV studies but that still doesnt show what side of the fence she's really on.
  4. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,404
    Likes:
    4,133
    Sth Australia
    off topic but i wanted to say thank you CBS for posting that study as i hadnt seen it before and didnt even know that such a thing as high blood flow POTS even existed.

    Maybe that is what is wrong with me? my body has shifted a lot during the time ive had CFS/ME, i used to have always very low BP and be always cold (others would comment how cold i felt)..except when i had a fever, now days my body eg hands seems to be nearly always warm and warmer than other peoples. My Raynauds is gone and now i suffer from high BP quite a bit (along with the POTS). Maybe the blood volume is caused by some kind of body dysregulation issue??..
  5. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,404
    Likes:
    4,133
    Sth Australia
    :p diabetes is probably caused by a virus http://www.nhs.uk/news/2009/03March/Pages/DiabetesVirusLink.aspx Just like most chronic diseases are being caused by pathogens :p
  6. judderwocky

    judderwocky Senior Member

    Messages:
    327
    Likes:
    3
    failing to not find one retrovirus, does not remove the rest from the list. there are still other retroviruses, and with so many cohorts in the disease, its possible that different cohorts correspond to different retroviruses. CFS might simply be "Lymphotrophic Retroviral Syndrome" .... there are other classes of retroviruses that attack the lymph and nerve systems... not finding xmrv doesn't say anything to the presence of these other viruses. I believe they continued to look for retroviral links... and found them .... Mikovits did study retroviruses specifically... thats why they hired her... at least that was my impression...
  7. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,404
    Likes:
    4,133
    Sth Australia
    ***thumbs up****
  8. jace

    jace Off the fence

    Messages:
    855
    Likes:
    170
    England
    Cort, when V99 referred to "quick and dirty studies" I took her to mean the recent CDC retrovirology study, and the Imperial College BMJ study, among others. BTW, have you read the comments page on the CDC study? It illuminates the many flaws.

    So it's a shame that you made that 'quick and dirty' comment.

    I believe this was Dr. Vernon's own assumptions, based on her interpretation of the pathophysiological research, up to that date, July '09. It behoves her to restate her position clearly, on the "front page", in light of the events that followed that date. Everyone has a right to be wrong, but good people own up when they realise their mistakes.
  9. judderwocky

    judderwocky Senior Member

    Messages:
    327
    Likes:
    3
    We're not going to agree

    BLAH BLAH BLAH....

    none of us are going to agree on this... no side is hearing what the other is really saying... its just gibberish and unfortunately we're only hurting each other at this point... i think we're all getting frustrated.

    consider the words of the very wise Ke$ha ;p

    [video=youtube;3taEuL4EHAg]http://www.youtube.com/watch?v=3taEuL4EHAg[/video]
  10. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    735
    Hi, CBS and the group.

    I just want to note that quite a few PWCs have taken Dr. Amy Yasko's nutrigenomic panel, and one of the genomic polymorphisms on this panel is a deletion in the ACE (angiotensin converting enzyme), which converts angiotensin I to angiotensin II. This deletion causes an elevation of angiotensin II, and PWCs very commonly have a homozygous (+/+) result for this polymorphism. Since many PWCs also have diastolic dysfunction, which results in low cardiac output, as well as having POTS, I think there might be a connection here. Thanks for posting this.

    Best regards,

    Rich
  11. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    Yes, I was having some fun at your expense but it was tongue in cheek - did you see the smiley? Here's your post (which was in response to my post)

    V99 - No, I said looking for what is obvious. Viruses, retroviruses, entroviruses, they are the obvious choice.

    You added this quote from my post referring to work done by the WPI. That's what the 'they' refers to

    To that you responded

    Again, it was tongue in cheek by the way. Hence the dots and the smiley at the end.....:)
  12. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    What she's doing is what all good researchers are doing - which is presenting all the research in the area; basically she's covering all the bases. It can be uncomfortable to witness, for sure, but its important to her standing as a researcher.

    If you really want to know what side of the fence shes on then the best way to do that, I think, is to look at the research she is promoting with the CAA. That's her job - she earns her keep by promoting research that produces results so I'm sure its outcome is of real importance to her. Everything she's doing is physiological.

    Here's the link to check it out of you're interested. For me, I don't see any fence sitting there. I don't see have behavioral and half physiological - I see all physiological stuff. - http://www.cfids.org/about/acceleratecfsresearch.asp
  13. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    I don't believe they hired her because she was a retrovirolist. (They weren't studying retroviruses at the time nor are they studying other retroviruses now). As I remember they hired her because she was a virologist with a cancer background and Dr. Peterson had just found a cancer cohort in his Incline Village patients. She found out about that at an HHV6 convention. It was the cancer viral connection what hooked her.

    They did look for other retroviruses and they didn't find any. If there were other retroviruses associated with CFS we would surely know about it. Maybe when the next human infectious retrovirus is found it will show up in CFS as well. I really think there is this overemphasis on retroviral thinking in general.l If it was not for HIV retroviral research would be a very small field. Until 2006 there were only two human infectious infectious retroviruses. Now there are three.

    There are probably hundreds of infectious viruses......Statistically you'd have a far better chance if you went with viruses instead of retroviruses. Researchers have been looking like mad for retroviruses in other diseases since HIV showed up almost 30 years ago. They've only found two since then! It hasn't exactly been a growth industry. Who knows, it could be fifty years before the next human infectious retrovirus shows up....

    I'm just saying I don't think any of this was easy...or obvious.....
  14. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    Jeez, Jace - when she writes another review paper I dare say she will....The fact that the CAA is doing an XMRV study now does seem to suggest that they think it might play a role in CFS???? Isn't putting money towards an XMR study of all things enough of a 'restatement' for you?

    Or maybe she should wear a sign around her chest for a couple of weeks saying.....I was right at the time but events have proved me wrong - please forgive me? What exactly do you want?

    I know some people worry about Dr Vernon because she comes from the CDC but I am very comfortable with her - she's working very hard, she has big, big (BIG) ideas and she's focused entirely on physiological research. I'm very happy with how she's turned out.
  15. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Yes, I could see the smiley. That comment undermines XMRV research and is at the expense of every patient, not just me. You need to remove it.
  16. pieddours

    pieddours

    Messages:
    9
    Likes:
    1
    I must admit, it's not quite as funny as this joke:

    "Are they helping the CDC perfect that test that finds XMRV in fake samples?"
  17. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Cort, are you going to remove this false accusation or not?

    It is highly suspicious that this 'pieddours' first post is aim at me. Clearly you accusation is having an effect.
  18. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    It was intended as a joke - not an accusation. It simply implied that logically one could interpret your statement that way. The fact that it had a smiley on it indicated it was a little stab at the wording of your statement, yes, but that it was tongue in check.....I will make it more clear that it was a joke, though - so there will be no doubt about it.

    Pieddours post does not. to me, suggest that you feel the WPI's does quick and dirty studies....it implied that you didn't get 'the joke' or ironic stab or whatever it was.
  19. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    No Cort, it is a personal attack and accusation, if you do not remove it you are forcing my hand.

    It also undermines the research that the WPI is doing. Is this your aim?
  20. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    No one but you is forcing your hand. I have clarified the statement to ensure that no one could consider it anything other than a joke.

    If it was my aim to undermine the WPI's research I promise I would write a paper about it. I'm pretty upfront about what I believe and don't believe.

    (I certainly wouldn't not scatter little jokes around that tick people off much more than I expected. Hopefully you can accept that. While it was a little dig at your statement it was nothing more than that, I assure you. )

    Here's what I put in the post:

    (Since this statement really ruffled some feathers let me clearly point out that yes, while it was a bit a stab at V99 from me - it was done tongue in cheek (hence the smiley) and was never meant to imply that she actually felt the WPI did quick and dirty studies.)

See more popular forum discussions.

Share This Page