Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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At this point, how likely do you think it is that XMRV/HGRVs are a key factor in CFS?

Discussion in 'General ME/CFS News' started by Esther12, Sep 30, 2011.

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t this point, how likely do you think it is that XMRV/HGRVs are a key factor in CFS?

  1. 70-100%

    18 vote(s)
    46.2%
  2. 40-69%

    6 vote(s)
    15.4%
  3. 10-39%

    2 vote(s)
    5.1%
  4. 2-9%

    2 vote(s)
    5.1%
  5. 0-1%

    11 vote(s)
    28.2%
  1. Esther12

    Esther12 Senior Member

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    I posted a near identical poll in the XMRV section, but we were wondering if members who tended to visit that section might have different views to those who do not: http://forums.phoenixrising.me/show...s-are-the-cause-of-CFS-ME&p=208557#post208557

    Please feel free to vote in both polls, or just one, but I'm interested to see how likely members here feel it is that the WPI's work is going to hold up. Comments and explanations are most welcome - we got a bit of a discussion going in the other thread, and it was interesting to learn about what others thought. It also managed to stay more civil and calm than I feared could be the case, as I know this is the sort of topic which can be difficult to stay emotionally detached about (or maybe everyone else here is just much more mature than I).

    Personally, I think that the failure to distinguish between samples from previously positive patients and healthy controls under the blinded conditions of the BWG has knocked out the key reason for thinking that XMRV/HGRVs are important to CFS. If the WPI's testing isn't reliable, and it now seems they've decided to withdraw all their XMRV/HGRV testing from the market, then the case for association is back to square one. While I'm still interested in the ongoing work from Ruscetti/WPI, I now see it as a real long-shot. I think I'm probably in 0-1%, rather than 2-9%.

    edit: It's really hard to get the wording for this question exactly right. Hopefully you get a good idea of what I mean, and the results were only ever going to be a rough guide to what people are thinking. At least the wording is marginally better than the last poll.
     
  2. barbc56

    barbc56 Senior Member

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    Wow, so far a big difference. I need to go check how many people have posted on the other poll. This is an intriguing experiment. Here's a bump. :>)
     
  3. Esther12

    Esther12 Senior Member

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    It could also be that this poll was posted later.

    It seemed that the BWG results led to a big drop in the expectation HGRVs are related to CFS, then some rumours about why the BWG didn't matter started circulating and people's expectations rose, now those rumours have been pretty dispelled so expectations are down again.
     
  4. Carrigon

    Carrigon Senior Member

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    PA, USA
    I don't trust the studies, I think there's a high probability that XMRV or something similar is involved. And there are people out there who will stop at nothing to continue to hide it. Why would you help to cure your cash cows? Having chronically ill people who need lots of expensive tests and endless treatments means alot of money to the medical industry. The perfect patients, people who will never, ever be well.
     
  5. Esther12

    Esther12 Senior Member

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    One other possible selection bias thing: Even in this forum, I expect that only those who have been following the science a bit will open this thread and vote. Some patients really aren't that interested, and are happy to focus on their own lives while waiting for a consensus to emerge (prior to the publicity about XMRV it had been about five years since I'd bothered to look in to any CFS research, which was pretty dire at the time and has only recently shown some flickers of life imo).

    CFS is a burden for the government and society, even if it's one mainly borne by patients. If there was good evidence of a retrovirus circulating in the blood supply, then that is another serious risk and burden that those involved would not be willing to cover up. I don't know about you, but I'm not a cash cow for anyone - I don't have the money to be.

    CFS is treated dismissively with quackery, indifference and prejudice - but retroviruses in the blood supply are taken seriously.
     
  6. ukxmrv

    ukxmrv Senior Member

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    I think that some of the patients who have an interest in XMRV have left some of the forums for now or are keeping off the internet because of some of the comments.

    I certainly know of some in the UK who are feeling that way (they have said to me) and although they have read the science papers, understand the arguments and support the WPI they don't feel that the internet is a very kind place to be right now.
     
    SOC likes this.
  7. Dreambirdie

    Dreambirdie work in progress

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    N. California
    I thought I had already voted on this. But now I see it's a new poll.

    This might be confusing for some people, and skew the results.
     
  8. Esther12

    Esther12 Senior Member

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    And also - some of the most committed XMRV supporters left this forum for another.

    So really, there are a lot of reasons this poll could under-represent those most supportive of XMRV, most sceptical, and most unsure.

    These internet polls are not going to be able to compete with large scale population based studies, are they?
     
  9. Bob

    Bob

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    England (south coast)
    Esther, I was hoping that your next step would be to carry out a large scale epidemiological study.

    :D
     
  10. barbc56

    barbc56 Senior Member

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    If I am reading correctly, it looks like this poll is not meant to be definitive. But fascinating, nevertheless.

    Thanks Esther.
     
  11. fingers

    fingers Senior Member

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    SW Endland
    barbc56 and Bob (how are you doing my old UK mucker?),

    Fascinating, I agree, and what strikes me is the polarisation. That suggests to me that we haven't a clue and never did have, and probably never will have for a long time yet.

    Our immediate question is where do we go and what do we do? A poll perhaps.....

    1) Away from these internet forums
    2) Full tilt into advocacy for better understanding and research
    3) Terrorism
    4) Collaboration, approach researchers, psychiatrists, politicians, medics to try to make some progress

    Not comprehensive, and not mutually exclusive.
    Not much use at all really.
     
  12. Bob

    Bob

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    Hi fingers,

    Great to see you on the forum! :hug:

    I've been thinking along similar lines today.

    There's been so much disagreement, hostility and bickering between us patients since the BWG study, that I think we are in danger of losing sight of the fact that we are all on the same side.

    So maybe we could all think about how we could all come together as a mutually supportive community and point all of our energies in the same direction?

    I've thought about starting a new thread on the forum, but i've got a cold, and I don't know if it's a good idea until i've thought about it with a clear(er) head:

    "Where do we go from here? - How can we all come together? - How can we pool our resources?"
     
  13. Esther12

    Esther12 Senior Member

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    I've been out knocking on doors. My neighbours seem to think it's quite likely that XMRV and CFS are related, but they could have just been trying to get rid of me. Some of them treat me like I'm a bit odd.

    I was expecting 2-9% and 10-39% to be more popular, and 70-100% less. I'm surprised that a lot of people are still so confident about it. There was a period around Lo/Alter (probably prior to the paper coming out, but when we had been told it was a 'positive') where I got up to about 50% - that's about as confident as I've ever been about anything to do with CFS! Never mind being at 70+% now.
     
  14. Bob

    Bob

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    Ah, I see it's a typo (?) It took me ages to work out what you meant!
     
  15. markmc20001

    markmc20001 Guest

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    Seems to me nothing has changed in 30 years. There is a group of well meaning scientists who want to find solutions or treatments. There are other various groups(including governments and advocacy organizations) who's main focus is to jump in when any effort starts, and never provide help or money but essentially stifle efforts. All this now has been taken to the forums which basically shines a light on how bad things really have been all this time.

    Now we have the internet forums with information traveling at speeds never realized before the 21st century. All these groups with various motivations mingling together on a minute basis 24/7. The good and trying to defend against the bad. The two groups working within totally different moral boundaries. Debating right in public.

    Where does that leave us?

    1) The bad guys aren't leaving.

    2) It's hard on everybody

    3) Provides a ray of light into the dark side of CFS research world the average person has never known existed before.

    Edit: One thing has changed, Another group the WPI(a patient focused organization), has jumped into the meat grinder and is trying to pave the way for a loved one and the millions of others wanting a shot at life.
     
    jace likes this.

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