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!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

XMRV Replication Studies

Discussion in 'XMRV Research and Replication Studies' started by Cort, Dec 5, 2009.

  1. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
  2. alice1

    alice1 Senior Member

    Messages:
    457
    Likes:
    0
    Toronto
    Thanks for the info.
     
  3. Martlet

    Martlet Senior Member

    Messages:
    1,837
    Likes:
    3
    Near St Louis, MO
    I guess the upside is that they have not suggested that the sickest amongst us have been the subject of some voodoo curse. But seriously, this leaves me - flabbergasted.
     
  4. Megan

    Megan Senior Member

    Messages:
    230
    Likes:
    13
    Australia
    Dubbo Study

     
  5. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    Remember that Dr. Lloyd is the creator of a large study that looked at what happened when people came down with four kinds of different infections. The focus was on whether the immune system acted differently or the pathogen was not eradicated in people who came down with ME/CFS vs the people who did not. That's the biggest project of his career. Does that sound like someone who thinks ME/CFS patients are simply somatizing?

    I just looked at those guidelines from Australia in 2002. This is one thing they say.

    They also say this

    I see them saying that they simply don't know. They do cover immune, CNS and HPA axis studies. Dr. LLoyds emphasis has never been somatization; he's never done a study on that to my knowledge and he's done lots of immune and gene expression studies. Yes, he was funded by the CDC but that was determine the immune status of people who came down with an infectious illness. I think we can all probably agree that that was a good idea.

    They're very conservative, they don't recommend many treatments and they do recommend CBT/GET but note that they say exercise 'without relapse'; ;these are not the hated GET program that pushes patients until they fall apart.

    Dr. Lloyd is skeptical about many things in CFS research. He's kind of known for stepping in the middle of an exciting issue and saying this doesn't make sense. He believes, for instance, that gene expression is a waste (based on his results).

    I trust him -he's not going to manipulate data and he has a good group to test. It'll be interesting. :)
     
  6. For someone who is supposed to have his finger on the pulse of all things ME/CFS, that is one ignorant post and you obviously know nothing of the history of Lloyd. If you can't see where he is coming from and where his sympathies lie (and I'm not convinced that you don't) then I despair. You may have a lot of people fooled Cort, but not all of us. It's "funny" how often you are the "voice of reason" and appear keen to offer support for people such as Lloyd and his pals and support stress research etc etc.
     
  7. winsomme

    winsomme

    Messages:
    14
    Likes:
    0
    a little confused about a report being due in January 2010.

    So, leaving aside whether or not Dr Lloyd has a bias, do we know for a fact that he has conducted a study looking for XMRV in CFS patients, and do we know that the study is completed and the results due next month?
     
  8. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
  9. Robin

    Robin Guest

    If you think Cort is wrong, then tell him why he's wrong. Give us a good history of Lloyd, or respond to what Cort said directly (see Catch's post, above.)

    There's no reason to call someone ignorant and or attack their loyalties; that doesn't fly here. Argue about the issues, not the people bringing them forth.
     
  10. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    I think Cort makes his position very clear in the piece he wrote at the link I provided above.

    It cleared up something that had always confused me about Cort. (Hi Cort!)

    I realize now that Cort's approach to writing about and reporting on ME/CFS is, by design, very neutral. It's who/what/when/where/why with as little editorializing as he can manage.

    I'm going to stray a little bit here from the facts. I also think Cort takes people at face value when he meets them. They make sense, they seem decent and that's what he reports. I don't know if his writing style would change with more knowledge of the back story.

    I also think that NAs don't really understand just who they are hosting when they have certain people from over the pond.
     
  11. I'm not feeling well enough to write loads of information and look up all the relevant details. Anyone who really knows the history surrounding ME will know about Lloyd and his work and ideas. Cort knows. He also gets the message, so, no, I don't need to write anything more. I'll do it my way thanks. If you don't like it that's your problem. There is plenty of evidence of what Cort Johnson stands for, and I personally don't like it. Am I not allowed to have that opinion? That's called censorship. Cort loves himself a bit too much and all of you worshippers at the Cort alter just serve to reinforce that.
     
  12. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    Leaving Cort aside, I don't know all that history and would be interested to hear it (even just the basics) when/if you're up for it.
     
  13. Martlet

    Martlet Senior Member

    Messages:
    1,837
    Likes:
    3
    Near St Louis, MO
    Actually, no it is not our problem. It is yours. We try hard not to step in and moderate but personal attacks are simply not permitted in this forum and I echo Robin's request that you argue on the issues, not on personalities.
     
  14. CBS

    CBS Senior Member

    Messages:
    1,367
    Likes:
    271
    Western US
    Educate Me

    I Wanna Be Well,

    One of the things that I value most about this group is that it is a civil place to learn more and that we can disagree without tearing the group to pieces. I've dealt with CFS for 16 years but I never accepted the label until very recently and still only because I feel that it is very short lived.

    I've only recently started to appreciate just how good I have it. The situation in the UK sounds horrid. I'd like to second Fresh Eyes and say that I too would like to learn more about what you KNOW.

    I know that the energy is often not there for a long and drawn out analysis but facts are essential. I'd even be satisfied for the moment of you could just point me in the right direction.

    Thanks,

    Shane
     
  15. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    Hi Shane. Interesting, me too on the above. I imagine there are probably many like us.

    FYI there is a post with some links re Lloyd at #42 on this thread. But I'd still like to hear from IWanna, whenever he/she is able.
     
  16. CBS

    CBS Senior Member

    Messages:
    1,367
    Likes:
    271
    Western US
    Cytokines and definitions (again)

    Didn't Dr. Klimas publish an article recently on cytokine activation and CFS. I'll need to do some looking but it seemed like there was a very specific subset that she found differentiated CFS from controls. If this is correct, has anyone looked at the cytokines referred in Lloyd's early study lined up with the Klimas study?

    As for a history of Dr. Lloyd's work and his present stance, I do find his recent statements about the WPI XMRV interesting. He clearly has a close relationship with, and seemingly a respect for, the CDC.

    I thought that it was ironic that one of the studies in which he participated (What is chronic fatigue syndrome? Heterogeneity within an international multicentre study.) essentially states that "There was substantial variation in subclass prevalences between the study centres (Class two range 6-48%)." That's an eight fold difference!

    To me that should read "We're all defining this in different ways and whether or not you are Dx as having CFS has more to do with where you are seen that what you have. As so called scientists, have screwed this whole thing up to such a degree that none of us could even tell you what we are studying!"

    It does leave me wondering who he will be including in his XMRV studies and what expectations he brings to this work (read - how hard he will look given his expectations?).
     
  17. Martlet

    Martlet Senior Member

    Messages:
    1,837
    Likes:
    3
    Near St Louis, MO
    Isn't that going to be the case with most studies? When I was diagnosed, the Holmes Criteria was the standard. Then we got the Fukuda compromise and have been going downhill since then. If doctors decided they were just studying those who meet the Holmes, or even the Canadian criteria, would there not be an outcry from those who can meet neither yet have a diagnosis of CFS/ME? And if they include all those with a diagnosis, then there would be an outcry from those who meet the more stringent requirements that the data has been diluted. All I know is that I would not want to be a researcher at this point!
     
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    Canadian ME/CFS definition

    It seems obvious to me that the Canadian 2003 definition is the only valid one. I really don't think we should throw up our hands and say let them use all the definitions because people will be upset if we limit the studies to one definition. Our biggest problem over all seems to me to be the continued acceptance of ludicrous definitions like Reeves and Oxford which were intentional made overly inclusive and vague so that when they studied the patients fitting these loose definitions they will find psychopathology. Reeves and Oxford defs are just a sophisticated way to discredit us and retard the science.
     
  19. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    My knowledge regarding Dr. Lloyd comes almost entirely from the research end.

    I know that he's a controversial figure in Australia; someone pointed me to a paper he wrote on exercise in chronic fatigue syndrome. What I remember from that paper is that he very plainly stated is that if exercise causes a flare in symptoms that the patient is doing too much. That I didn't have any trouble with. I don't know about other things.

    But my experience of him is through the Dubbo studies - in my opinion the potentially single most mportant set of studies (until XMRV came about) we've had. Dr. Lloyd took four sets of patients who came down with an infectious illness (viruses or bacteria) and followed them see if ones that came down with CFS and some immune dysfunction or if they had trouble finding of the pathogen.

    He found that the people who came down with CFS after an acute infectious onset had and exaggerated immune response; their cytokine levels were much higher than they had worse symptoms than the people who recovered. This is the first time anyone has caught "CFS' in the act. It suggested that somehow this temporarily high-level of cytokines caused damage in the central nervous system.

    I don't know how you cannot like that work. Unfortunately Dr. Lloyd has gotten very little financial backing for his studies. Oddly enough the CDC was his major funder; once they backed out he tried twice to get an NIH grant and was rejected both times.

    This is why when I see someone suggesting that Dr. Lloyd is 'somatizer' or whatever I just don't get it. Maybe there is information that I'm not aware of but I do know that he is responsible for one of the most exciting, physiologically based set of studies ever undertaken on this disorder. That's what I associate with Dr. Lloyd.

    http://aboutmecfs.org/News/PRFeb06.aspx
     
  20. CBS

    CBS Senior Member

    Messages:
    1,367
    Likes:
    271
    Western US
    Where is the IACFS/ME on this?

    I was going to post this weeks ago on the thread discussing 'How the CAA was doing?' but didn't because I thought that it was as much the responsibility of a group like the IACFS/ME ('Dedicated to research, education, treatment and finding a cure for ME/CFS').

    Do we really think that patients are happier just because we're all stuck together in the same miserable sinking boat? Heterogeneous samples to not lead to clear concise conclusions and a well defined literature.

    A group such as the IACFS/ME needs to step up and set some standards and define patient groups (God knows the CDC isn't going to do it!). They need to DEMAND that researchers clearly identify exactly how a cohort will be defined and then place the results of each study into it's appropriate category.

    Such as:

    Documented infectious onset - meets XYZ criteria
    Suspected infectious sudden onset - meets XYZ criteria
    No apparent infection - gradual onset - meets XYZ criteria

    Who it to say that by setting those of us with a documented infectious onset aside that the studies of gradual onset folks won't lead to an answer for them first? And regardless of which group is studied, any definitive explanation/diagnosis for a particular subgroup helps everyone else by getting rid of statistical 'noise.'

    We are all better off with a clear concise taxonomy. This is not about some people complaining. Right now this is about everyone complaining and with good reason. This is about good science and the lack there of leaving all of us stuck in this hell hole.

    Cort;

    Thank you for the additional info and your perspective on Dr. Lloyd.
     

See more popular forum discussions.

Share This Page