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.

At this point, how likely do you think it is that HMRVs are the cause of CFS/ME?

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Esther12, Sep 28, 2011.

?

At this point, how likely do you think it is that HMRVs are the cause of CFS/ME?

  1. 70-100%

    29 vote(s)
    42.0%
  2. 40-69%

    6 vote(s)
    8.7%
  3. 10-39%

    12 vote(s)
    17.4%
  4. 2-9%

    8 vote(s)
    11.6%
  5. 0-1%

    14 vote(s)
    20.3%
  1. Esther12

    Esther12 Senior Member

    Messages:
    5,387
    Likes:
    5,903
    I know that this is in the 'XMRV' section, so we're more likely to get answers from people with an on-going interest in XMRV, but I'm interested to see what posters on this forum think. I've set up a poll, but I'm interested to see some comments as well as just have people vote.

    PS: I had a bit of a problem phrasing the question, as 'causes' is more stringent than I wanted to be, 'is related to' sounds too weak. You could think of it as asking 'How likely do you think it is that most people with CFS/ME (defined by which ever criteria you think is most appropriate) suffer from an HMRV infection that was detected by the WPI, while most healthy controls do not?'

    I've been increasingly sceptical about XMRV for some time, and now think it's pretty dead. There are still a few unanswered questions, and that Ruscetti thinks it's worth continuing research makes me think that something could be going on, or they may have a hint at a virus other than XMRV... but the evidence against the 2009 Science paper has been piling up for some time, and the results from the BWG really undermine what I thought was the most important part of that paper - that they had a test which could reasonably detect whether blood samples came from CFS patients, or healthy controls.

    edit: I think that I'm in the 0-1% category - it's a long shot, but I'm still holding out a bit of hope.
     
  2. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,535
    Likes:
    2,095
    London
    My feelings haven't changed after the events of the last week so I am choosing the same sort of option I would before.

    None of your options really fit my thoughts though, Esther. I'd rather that it was "involved" in rather than "causal".

    No one has been arguing scientifically that HGRV's cause ME or has scientifical proof that they do. The WPI certainly don't argue this.

    What has been argued is that they are found in PWCFS and that is how I am answering your poll with my best guess. I think that your poll is asking the wrong question and is probably not going to give the most accurate or fair answer.

    I don't think that XMRV is dead but it may need to be renamed (and the same thing happened to HIV/AIDS)

    When you say that evidence against HGRV is piling up we differ. I can't see the evidence against HGRV's piling up. After the retraction by Dr Silverman of his work we may finally be looking at an explanation of the negative papers and the contamination questions. The case for HGRV's may actually be stronger once we know the full story of what Silverman has done and what impact it has.
     
  3. Esther12

    Esther12 Senior Member

    Messages:
    5,387
    Likes:
    5,903
    I did struggle to get something clear and concise.

    I wanted to make it clear that it needed to be really significant for CFS/ME. Maybe I should have asked: 'How likely do you think it is that the findings in the WPI's 2009 Science paper will be widely respected and seen as largely accurate on ten years time?' That's not quite right either.

    Hopefully people get a sense of what I mean. The answers can only be a rough guide... I could have interpreted my own question differently and answered 2-9%.
     
  4. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    I don't want to bother you with that, but why do you use the term "CFS/ME"? I think it's often used by people we don't like very much and in bad research, mostly in the UK. It's nothing personal, i just feel like we should not aid these people.
     
    Dolphin likes this.
  5. Esther12

    Esther12 Senior Member

    Messages:
    5,387
    Likes:
    5,903
    Personally, I've never been that interested in what it's called. I realise that it can be important, and that the way Chronic Fatigue Syndrome sounds will have caused us problems, but it's just not something I'm that interested in, or have spent much time thinking about. I think that there are problems with ME too. Maybe I should try to come up with my own term?!

    The initial Science paper was about CFS, but I know that a lot of people here wouldn't like me using just CFS, so I added in the ME too. Perhaps because this isn't a topic I've paid much attention to, I didn't really know what was best.
     
    Firestormm likes this.
  6. Bob

    Bob

    Messages:
    8,912
    Likes:
    12,628
    South of England
    Hi eric,
    I appreciate the point that you are making, but I find that so many people have a diagnosis of 'CFS' but not of 'ME', that some people feel like I am being divisive if I only refer to 'ME'. This is because they have a 'CFS' diagnosis, and not an 'ME' diagnosis. For people who don't follow the science and politics as closely as you and I do, they might not be aware of all of the issues, and the differences/similarities between CFS and ME, and why they have a 'CFS' diagnosis rather than an 'ME' diagnosis.
    So I tend to use the terms 'ME/CFS' or 'CFS/ME' on the forums because it's inclusive.
    But that's just my experience on the forums... I'm not telling anyone what term they should use.
     
    jace and justy like this.
  7. Bob

    Bob

    Messages:
    8,912
    Likes:
    12,628
    South of England
    Hi Esther,

    I can't really answer your poll because your answers don't work as an answer for me.
    I think it is a distinct possibility that HGRVs are associated with ME, and I'm watching the science develop with fascination.

    At the weekend, I thought that XMRV was dead.
    But now that I've found out the details of the partial retraction, I think that the XMRV/HGRV research is even stronger than before.

    The partial retraction explains so much, including why so many people have been unable to detect the virus using VP62 as a reference virus, and it explains the discrepancies between Alter's and Mikovits' work (i.e. the different strains or different viruses that they detected.)

    I've had to lower my expectations somewhat, because I can't see us getting any definite answers for years... Even more years that I originally thought it would be.
     
  8. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,130
    Likes:
    3,400
    N. California
    Me too, Bob. (bolds by me)
     
  9. Esther12

    Esther12 Senior Member

    Messages:
    5,387
    Likes:
    5,903
    Hey Bob

    'Distinct possibility' sounds like 10-39% or 2-9% to me... but this poll could only ever be rather clumsy, and it might mean something different to you.

    When you say 'even stronger than before' do you just mean that the BWG study was well designed, so whatever the results were it would strengthen research, or do you mean that it made you think it was now more likely that XMRV/HGRV is related to CFS?

    Surely the fact that positive results were scattered across the CFS and control samples undermines the primary reason from the 2009 Science paper for believing that XMRV/HGRV was related to CFS - higher positive rates from patients that controls. Now it seems that those tests were not reliable. While I still think that there's a possibility Ruscetti/WPI will dig something up, it seems to me that the 2009 paper is pretty fundamentally flawed, and that research in this area is back at square one.

    I've seen a few people talking about these results strengthening their belief that HGRVs are related to CFS, normally with reference to posts on the other forum, and I just don't see how this can be.
     
  10. undcvr

    undcvr Senior Member

    Messages:
    797
    Likes:
    133
    NYC
    I have never thought at XMRV was the cause of CFS/ME and am glad that I can finally say it without being seen as being disloyal to the CFS community. Back then, it seemed ridiculous considering the demographic of where CFS would occur. It just did not seem consistent with the graph of how a new virus would spread when it first goes epidemic. CFS was already everywhere.

    It does seem that that a HGRV or even a HG-DNA-V is involved but I also think that it is a 2 step process. I don't think it causes CFS out right, it causes you to be more susceptible to it and then the stress and strains of life pile in and you sucuumb to it. It is still the environment that pulls the trigger and if you catch it early enough, you can recover from it. This is my penny's worth of thought on it.
     
  11. Bob

    Bob

    Messages:
    8,912
    Likes:
    12,628
    South of England
    Well, I just can't pinpoint it. It could be anywhere between 10% and 90% for me. I'm optimistic about the research still being valid, but I'm not certain of anything.

    I'm refering to the partial retraction of the Science paper, and the news about VP62.
    The partial retraction of the Science paper explains why no one can find XMRV using VP62 as the reference virus. VP62 is an artificial construct, it seems, and not a naturally existing virus.
    So for me, this can explain why there have been so many negative studies, why Alter and Mikovits have detected HGRV's where others haven't, and it explains the discrepancies between Mikovits' and Alter's viruses, or variants.

    I'm still working out what it all means though, and haven't got completely up to date with all the details yet.

    The BWG was pretty irrelevant for me, because there were so many unfavourable factors and unknown variables in it anyway. I never expected it to show more than a mixed result anyway. Although I must admit that i was surprised by the results. My understanding is that Mikovits was not free to choose her own methodology for the BWG, although I don't know the details.

    Let's not forget the multiple prostate cancer studies and the two ME studies that found differences between ME patients and healthy controls. Even if there is no virus involved, then these would be very useful biomarker studies. Something is going on.

    I agree that there are more questions than answers right now. But the BWG group was just one study. I don't think that undue prominence should be placed upon it, especially as the methodology used might have been very far removed from Mikovits' ideal methodology.
     
    jace likes this.
  12. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    It's not such a big deal because of one thread and like i said i really don't want to bother anyone. I also use the term ME/CFS, for the reasons people mentioned on this thread. But even if it seems like an irrelevant detail, i think there's an important difference between "ME/CFS" and "CFS/ME". Because it gives you a different impression, but also because it's a different group of people that's using each. And one of them are not our friends, in my opinion (that of course doesn't include members of our community who say "CFS/ME", don't misunderstand me). Im quoting from Cort's interview with Marj van Sande (http://forums.phoenixrising.me/cont...-Criteria-for-ME-the-Marj-Van-Sande-Interview):
    I just think we should not play into the hands of these people (don't know if you say that in English). Sorry, Esther, like i said, nothing personal ;-) I personally prefer "CFS" over "CFS/ME", because CFS is just CFS, something defined by Fukuda, Holmes, etc. "CFS/ME" gives me the impression that there is a disease called CFS, but you can also call it ME and now you lump the ME cases together with the CFS population, but it's still CFS. It kind of soils the name "ME". Even though weasels don't have a very large brain, i don't think they introduced this term by chance... "ME/CFS" on the other hand puts the emphasis on ME. Now i will stop taking this thread off topic...
     
    Dolphin likes this.
  13. Sam Carter

    Sam Carter Guest

    Messages:
    297
    Likes:
    192
    As well as the positives being scattered more or less equally between the CFS patients and controls, both the WPI & NCI / Ruscetti's serology assays designated multiple samples as being both positive and negative meaning they have no diagnostic value.

    It's also hard to understand the back-pedalling about VP62 being unrepresentative when the WPI found exactly this sequence, and in a pedigreed negative to boot! This is strongly suggestive of contamination in their laboratory, a point Bob Silverman made as clear as possible (without actually saying it) in his partial-retraction.

    As Esther says, it's possible that Ruscetti/WPI may come up with something, but the BWG results taken together with other publications have left the original Lombardi paper in shreds.
     
  14. Bob

    Bob

    Messages:
    8,912
    Likes:
    12,628
    South of England
    I understand what you are saying eric.

    In the UK, it is officially known as 'CFS/ME'. That's our official diagnosis. So this adds extra confusion.

    Patients in the UK tend to refer to it as 'ME'.
     
  15. Bob

    Bob

    Messages:
    8,912
    Likes:
    12,628
    South of England
    At this stage, I need some convincing about the HGRV research too.

    It does seem to be in a bit of a mess!

    But don't forget that a number of high profile researchers think that they have detected XMRV, in studies where they haven't attributed it to contamination.

    For example: Coffin, Singh, Switzer, Mikovits, Alter (HGRV, not XMRV).

    So for me, there's many more questions than conclusions at this point in time.
     
  16. Sam Carter

    Sam Carter Guest

    Messages:
    297
    Likes:
    192
    I'm not sure we can list John Coffin as proponent of XMRV, Bob!
     
  17. Bob

    Bob

    Messages:
    8,912
    Likes:
    12,628
    South of England
    He's not a proponent of XMRV in ME patients.

    But he has carried out XMRV research, in which he concluded that XMRV is a novel retrovirus that infects human tissue. (i.e. the recombination study.) And he ruled out contamination of his study.

    So, my point was that many researchers agree that XMRV is a novel retrovirus that infects human tissue.

    So something is there... But we just don't know what's what at the moment.

    Even if XMRV proves not to be associated with ME, it's still a novel retrovirus that infects human tissue, and contaminates many labs.

    Well, at least that's what the consensus seems to be, at the very least.

    Although, now that VP62 is invalid, it does seem to question Coffin's recombination study.

    The main point that I'm making is that XMRV research hasn't yet finished... There's a lot more to find out, whether it's associated with ME or not.
     
  18. barbc56

    barbc56 Senior Member

    Messages:
    1,581
    Likes:
    984
    I agree. I became skeptical about XMRV when the negative studies came out but the Singh study really made realize that contamination was a player in the previous studies.. I think Singh has great integrity, follows the science, changing her views when the data is showing something else. This is how science works. It happens all the time.

    I think one important question to be looked into, is why some people might get ME/CFS where another won't after being exposed to the same agent such as a virus,colds, strep bacteria, possibly toxins in the environment just to name a few. Why is that person susceptable. An autoimmune condition? I don't know, but I think it needs to be looked into.

    A lot of "spin" has come out since this weekend and I think it is just that. Spin and people wanting to hold onto the idea that a retrovirus is responsible for ME/CFS. I was very excited about the science papers when they first came out but science has shown we need to look in a new direction.

    I have been quite disappointed how the WPI has handled things the last several years. I thought they had potential but their unprofessionalism, as well as a few other things, have dampened my perception of the WPI.
     
  19. Bob

    Bob

    Messages:
    8,912
    Likes:
    12,628
    South of England
    But Singh has detected XMRV in about 5% of the normal population in her prostate cancer (tissue) study, and 0% of the normal population in her ME (blood) study.
    So there's a discrepancy in her conclusions based on the two studies.
    Which study should we believe? Or should we believe both of them? (i.e. that she can detect the virus in tissue, but not in blood.)

    She hasn't withdrawn her prostate cancer study, so i assume that she believes that it is still valid. It validates the WPI's work, in so much as they both detected the virus in roughly the same proportion of the healthy population.
    Switzer, of the CDC, also says that he can detect XMRV in tissue but not in blood.

    I totally understand why people have had enough of hearing about XMRV.
    But the multiple research findings haven't been explained yet.
    It's normal for this sort of research to take a very long time.
     
  20. Esther12

    Esther12 Senior Member

    Messages:
    5,387
    Likes:
    5,903
    In the science editorial, it said very plainly that all the labs were free to use whatever testing they thought would be most effective. It seems like a few patients now think otherwise, but as far as I can tell, it's just based on an internet rumour. Apparently the WPI had some problem with contamination during the testing period which caused them problems, but I've not seen any evidence that the BWG wanted them to using anything but the most reliable testing they had.

    To me, it looks like XMRV in PC is likely to be contamination too, but that there's less interest in it. It will be interesting to see how Singh and Silverman respond over the next year or so. There are certainly discrepancies which still have not been explained - but they may never be. It seems that a lot of people have had a problem with contamination and XMRV, and it could be impossible to understand every instance of this occurring. It also looked as if the Singh CFS study was more thorough than her PC ones have been so far.

    re the claim that VP62 was contamination invalidating the negative studies... but we've had a number of researchers say that their negative studies should also have detected the positives detected by Lo/Alter. Lo/Alter was well over a year ago now, so researchers have had plenty of time to account for their findings, but we still had negatives, like the Singh study, which seemed really exhaustive.

    While there's still a possibility that they might turn something up, I just don't see any way that the BWG results could make it seem more likely that the WPI's results are accurate.

    (I don't think we'll be able to get to the bottom of this here, and I'm not too sure how useful it is to try to debate these matters, but even if we're not going to get to the bottom of this, I am interested/confused by the claim that the BWG results have strengthened the WPI's position, when their testing was shown to be unreliable).
     

See more popular forum discussions.

Share This Page