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!
Patient Experience: "What Bronllys taught me about pacing."
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
Discuss the article on the Forums.

Lipkin Study Press Conference 18th Sept

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by VillageLife, Sep 11, 2012.

  1. Esther12

    Esther12 Senior Member

    Messages:
    5,090
    Likes:
    4,865
    re Lipkin: "This is not a psychosomatic disorder, these people are sick"

    While most of those taking a psychosocial approach to CFS seem to be quacks, and many of them have done a great deal to harm patients, I'm a bit worried that this could give the impression that suffering from psychosomatic problems means that someone is not truly sick. There seems to be a lot confusion over what is meant by 'psychosomatic disorder' (and 'sick' really), and I'm sure that Lipkin didn't intend to sound dismissive of anyone's health problems, but I think it is good to try to be careful about the way in which one talks about mental health problems, so as to not end up promoting unreasonable views about those who are suffering from them.
  2. Simon

    Simon

    Messages:
    1,200
    Likes:
    3,574
    Monmouth, UK
    I see what you mean but think the real problem was my paraphased quote in the headline which was rather misleading, so my fault rather than Lipkin's. I have now amended it to "This is not a psychosomatic disorder..." Lipkin was pointing to the immune abnormalities which would not be expected in a psychosomatic disorder. I don't think it's easy to see this as disparaging, but watch the video slot yourself and see what you think.
    justy likes this.
  3. Bevbh

    Bevbh

    Messages:
    16
    Likes:
    5
    Austin, TX
    I'm always very impressed with Lipkin. He didnt get where he is without being really smart, good at the science, a good administrator/leader and politically astute. He clearly shielded Drs. Mikovitz and Ruscetti. It makes me a little concerned about what deals were made behind the scenes but at this point I am willing to believe that his heart is in the right place and he is sincere in his prognosis of good things to come from further research.

    An example of his political skill was the way he dodged the question from Hillary about XMRV and prostate cancer and why there has been no big rush to retract and re-examine that work. But he promised to talk about it in private with her.

    He also dodged the question from Hillary about the chimera viruses in labs. He focused his answer on the ones that are made on purpose and the scientific community's attention to coming up with guidelines. Totally ignored the fact that XMRV was supposedly made by accident and the labs were ignorant of its existance and the contamination of lab materials by it until the whole XMRV/CFS thing brought it into the open.

    I was a bit disappointed in the response to the question about looking for the virus in lymph tissue. Like Andrew I have some lingering questions about antibodies, and viruses that hide in tissue and arent seen in the blood. I havent read the paper yet though.

    Lots of positive good stuff though. I like the way he explained that earlier events can lead to abnormal responses to later infectious agents. Those early events could be prior infections. They are going to take a close look at host response.
    beaker likes this.
  4. Esther12

    Esther12 Senior Member

    Messages:
    5,090
    Likes:
    4,865
    re psychosomatic: Ah... okay. I haven't seen the video, and know that people can see 'psychosomatic' as synonymous with 'not real', so thought that he may have been using 'psychosomatic' in that lay manner.

    I don't really know why, as I know nothing about this area, but I feel instinctively sceptical when I hear people talk about immune abnormalities in CFS. I think I'm sceptical of any claim at all about CFS at this point, perhaps because I tend to read Oxford criteria psychological papers. I should probably try to find the time to look more seriously at the evidence around CFS and immune abnormalities. (Actually, that doesn't sound super fun).
  5. WillowJ

    WillowJ Senior Member

    Messages:
    2,852
    Likes:
    2,196
    WA, USA
    I thought the answer to that was pretty simple? XMRV was very flamboyant to ME/CFS, would be a possible eitiology, and given the lack of respect, an eitiology would be comparatively much more important. comparatively, XMRV is much less important to cancer, as cancer is already an attractive field to research. some kinds get more research than others, but all kinds of cancer get clinical respect.
    SOC likes this.
  6. WillowJ

    WillowJ Senior Member

    Messages:
    2,852
    Likes:
    2,196
    WA, USA
    I do not sweat NOW, but I used to have night sweats.
  7. Esther12

    Esther12 Senior Member

    Messages:
    5,090
    Likes:
    4,865
    I'm really doubtful about all the different criteria for CFS, so expect that none would be perfect. Something like 'night sweats' seems unlikely to be a cardinal symptom. Hopefully they'll be doing the study in a way which will allow for the identification of sub-types, rather than assuming they have a set of 'pure' CFS samples.
  8. user9876

    user9876 Senior Member

    Messages:
    684
    Likes:
    1,548
    New study confirms erroneous link between XMRV virus, prostate cancer

    http://medicalxpress.com/news/2012-09-erroneous-link-xmrv-virus-prostate.html
  9. user9876

    user9876 Senior Member

    Messages:
    684
    Likes:
    1,548
    He did say that these were the people most likely to have a persistant infection hence the choice - this makes sense when hunting a virus. I'm not sure if it will help in other immune system studies but it may be that he feels that these symptoms might corrospond to more obvious problems,
  10. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,262
    Likes:
    1,628
    London
    That's the problem user 9876.

    Were CFS or ME patients selected on the wrong criteria for the study?

    As I said earlier I'm an acute onset ME patient from an epidemic. If there was a criteria that includes some of the things he mentioned then I wouldn't be in the study. Yet I test positive for immune problems and infections.

    Why didn't he say "patients from a known epidemic" of ME or CFS as being likely to be included.

    Here we are nearly 30 years after the epidemics that gave rise to "CFS" and we are no further forward to explaining them.

    If the patient population isn't right then we may never have answers to this group. I'm hearing alarm bells from his talk last night.

    Back to the Hanson paper. If Lipkin had been looking at the Bell patients as a group what would have been found?
  11. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    ..


    New post by Dr Michael Snyderman on Dr Jamie Deckoff Jones blog.


    Called....We Must Move Foward

    http://www.x-rx.net/blog/


    This from Dr Snydermans new post!

    Quote
    beaker and currer like this.
  12. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    New Post from Dr Snyderman in the comments:


    Quote
    Bevbh, beaker and currer like this.
  13. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    769
    Esther I cannot believe you are serious.
    My consultant was a top immunologist and he was clear that there were definite immune abnormalities in ME.
    That is why he got patients referred to him in the first place, and went on to develop an interest in this disease.

    The only reason the immune disorder is not better known about in ME is because although there are clear abnormalities, no-one knows what their significance is, nor can these abnormalities be treated yet.

    So in the UK they do not bother to test for immune dysfunction.( Because they would not treat any abnormalities that the test showed.) As a medical decision this is purely a practical economy, and must not be confused with no immune abnormality existing.

    However, this immunologist did use immunovir, an immune modulator, in patients who wanted to try this, with some success (two thirds responded). He was unsuccessful in getting funding for an RCT for this drug, though and NICE would not accept his research because there was no RCT. (Chicken and egg)
    justy and Snow Leopard like this.
  14. WillowJ

    WillowJ Senior Member

    Messages:
    2,852
    Likes:
    2,196
    WA, USA
    the right thing to do, yes

    study here: http://www.plosone.org/article/info:doi/10.1371/journal.pone.0044954 (I have not read it)
  15. WillowJ

    WillowJ Senior Member

    Messages:
    2,852
    Likes:
    2,196
    WA, USA
    and because article reviews use Oxford (and 'Empiric') criteria to make it appear that these results are much more inconsistent, as they are then mixed with results from patients having fatigue from multiple undetermined causes.
    currer and SOC like this.
  16. Andrew

    Andrew Senior Member

    Messages:
    1,944
    Likes:
    1,189
    Los Angeles, USA
    Yes, I saw that. But I wonder if they were thinking in context of the monkey study.
  17. jspotila

    jspotila Senior Member

    Messages:
    1,066
    Likes:
    573
    Sasha and CJB like this.
  18. SOC

    SOC Moderator and Senior Member

    Messages:
    4,992
    Likes:
    5,538
    USA
    Exactly, Willow. So much about ME/CFS is said to be ambiguous because the study cohorts are so poorly selected that no consistent pattern can be found in medical testing. The little research we have where the cohort selection was better show a number of abnormalities -- especially immune abnormalities.

    I think the cohort selection for the Lipkin et al XMRV/pMLV study was as good as we're going to get at this time -- Fukuda + CCC and selected from the patients of some of our top docs, who know what they're doing when it comes to diagnosis.

    I'm pleased that they have banked samples from this cohort for further study. No researcher should have to select their own (lousy) patient cohort when good samples of a well-defined cohort are available.
    WillowJ, Sasha and TessDeco like this.
  19. SOC

    SOC Moderator and Senior Member

    Messages:
    4,992
    Likes:
    5,538
    USA
    WillowJ and jspotila like this.
  20. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    505
    Los Angeles, CA
    Well, now we know why he handled it that way. Those studies were being retracted a few hours after the press conference.
    WillowJ, Simon, Sasha and 2 others like this.

See more popular forum discussions.

Share This Page