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The Waning Con?ict Over XMRV And Chronic Fatigue Syndrome - new WPI sequences

Discussion in 'XMRV Research and Replication Studies' started by RustyJ, Sep 30, 2011.

  1. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Yeah Bob, you said it better than I did. I know the science will win out in the end. But we are a long way from that. More importantly most of us really flounder at understanding the science, so we must look instead at the behavior and inegrity of the scientists and hope they are doing their best to eliminate mistakes.

    After all, as has been repeated, many of the negative studies proclaimed XMRV was dead when their work established nothing of the sort. There was collusion here. All they have done is proven that VP62 is a contaminant, a fact they may have known prior to even starting their studies. There was funding from insurance companies and government departments wth the expressed intent to quash XMRV, irrespective of whether it was a contaminant or not. There was repeated incidences of negative study authors failing to declare conflicting interests in competing assay patents. There was deliberate government intervention to strangle funding to WPI and any other biological studies.

    This is very blatant misinformation, to put it very kindly. I have yet to see any blatant misinformation put out by the WPI. WPi have always said there was no contamination. As far as they knew that was the case. They undertook stringent measures to minimise contamination by using multiple labs. OK one of the labs fell through, but the others didn't. That's good management, not incompetance. They have always said there are multiple HGRVs, not just VP62/XMRV. Where is the misinformation?
  2. Dreambirdie

    Dreambirdie work in progress

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    What Rusty said! :thumbsup:
  3. mellster

    mellster Marco

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    I think it's good to let them continue their research, maybe they will produce something big, but I am more interested in the same question that is indifferent to the causing agent: why do only select people get sick? While a future epidemic certainly is possible, it has been said about many things before, I remember the mad cow disease proposed epidemic where within the next 20 years virtually parts of Britain would be wiped out and that was 20 years ago. I think the most promising path of research is to take well-defined patients and compare them as much as possible to healthy controls and try to find ANY differences, not just related to (retro)viruses. I still think that maybe a genetic defect or at least maybe a virally induced genetic mutation could be at play and it seems like there is not much research going on in this direction (probably because it is very difficult and costly).
  4. Dreambirdie

    Dreambirdie work in progress

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    Hi Mellster--

    I think that no stone should be left unturned in research on this disease, regarding both causative agent(s) and susceptibility.

    I'm in the Montoya study. He will be testing our blood for a long list of different pathogens. Maybe this will provide some useful information.

    As for virally induced genetic mutation... I have no knowledge about any kind of research on this, and wonder if anyone is even interested in it.

    The retroviral theory has made the most sense to me so far. I'm eager to see what Judy comes up with in the next few weeks.
  5. mellster

    mellster Marco

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    Dreambirdie - I am in Montoya's study as well and hope something will come out of it for everyone, but I think chances are 60/40 at best (still I'd take those odds). I have a friend who was stricken down for 4+ months with CFS following toxoplasmosis (I think Montoya will be testing for stuff like that) but luckily eventually recovered. Another thing I am not sure is whether it necessarily takes a retrovirus to bring one's immune defenses down, there are so many other possibilities. Thus I also believe strengthening the immune system by any means is the best thing to do at this point, which should also minimize any co-stressors/infections. I was baffled when I had my first blood test that I had depleted Vit D3 and B12 levels with a decent diet and some sun exposure, esp. living in the bay area. I think the daily suggested intake for most Vitamins & Minerals is too low by factors of 100x - 1000x. There are some ("alternative") docs who advocate getting naked skin sun exposure WITHOUT sun screen for at least 1-2 hours per day, even if it causes pink skin. A bit extreme, but I try to get at least 30 minutes intense exposure per day now.
  6. Dreambirdie

    Dreambirdie work in progress

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    Hi Mellster--

    I am a big fan of naked sun exposure. It always makes me feel better. I have an enclosed deck just outside my bedroom, where I can bask in the nude for as long as I want. And I am definitely an alternative medicine type--my MCS + CFS makes the ingestion of any pharma meds a disaster waiting to happen. I have had significant benefits from the methylation protocol, from high dose vitamin C and D supplementation, and from TCM--acupuncture and Chinese herbs to help manage the viral symptoms.

    My wish is to NOT have a retrovirus, because I really do NOT want one.
    But I do want some clear definitive answers to my 33 years worth of this damned disease, and I prefer the sooner to be the better.
  7. Bob

    Bob

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    Good idea... I'd like to see that as well... Large scale studies are needed.

    I think there were multiple reports coming from the recent conference about genetic studies. I even think I read a tweet that said that Nancy Klimas has replicated Jonathan Kerr's genetic subgroups research, which would be really interesting if she has (but i might be making that up - i can't remember if I actually read that now!) I think there is also other genetic work being carried out by other people - but I'm afraid i can't remember any details. (sorry for not remembering any details - my brain is like a sieve.)
  8. alex3619

    alex3619 Senior Member

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    On Science and Trust

    Trust and belief are two things that don't belong in science. Science is about data, reason, enquiry, transparency, communication and scepticism. Trust and belief are emotional states.

    Too often the scientists on one side or the other are painted as good or bad, when for the most part they just represent thesis and antithesis.

    I trust the motivation of the WPI given what is at stake and their personal commitment. I do not trust their science, believe in their science, or anything similar. I look at the facts.

    Who is getting the facts? The pro-HGRV thesis researchers, and the anti-HGRV researchers. All of them. In time we will have enough information that reason and data will give us a highly probable answer.

    Now the biopsychosocial research, as opposed to the virology, is something else entirely, although some of the issues are the same.

    In the virology they have repeatedly found that XMRV is not present in samples, and so have concluded that it probably is not present. In presentation to the media however I often read statements like it is NOT present, it is ALL contamination, as though these were certainty. The reasoning is: It might be so, therefore it is. Really? It might be true that ME is caused by aliens, so therefore it is? Do we really want to use this kind of argument?

    In the case of sensationalist media I think they really do want to use this kind of argument. Its tabloid press dominating the field, and occasionally responsible media organizations just cut and paste the tabloid nonsense without checking the facts. Its right up there with "An alien fathered my baby."

    The biopsychosocial movement has this issue in spades. CBT/GET is the only effective treatment for example. Really, what about antivirals with success rates that are an order of magnitude better? What about all the studies using objective outcomes that show it does not work at all? How can they claim that it is the only effective treatment when the percentage of patients who respond is very low, with a very small response, even in the most optimal studies? Yet the media presentation is mosty about success, the only effective treatment, when it isn't about patients "resisting" treatment or similar spin.

    Let us not forget that the entire psychosomatic issue is just a long standing hypthesis. It has NEVER been proved. Otherwise claims that MS, diabetes, rheumatoid arthritics etcetera are all psychiatric would still be valid - of course they can argue that they got it wrong for those diseases, but are right for the others. This however still rests on the same illogical claim: if we don't know what causes a disease the cause must be psychosomatic. This is such an open ended claim that, in principle, it is unscientific because it untestable. Or to use a term I have come to like recently: non-science. It has however been dis-proved, many times, but it can only be disproved to specific illnesses - like MS. It is impossible to disprove the entire thesis as it is not really a scientific claim - it is not testable and refutable in the accepted sense.

    When scientists present papers they are very careful. When scientists present personal opinion to the media, either the scientists are sometimes making outragious claims, or the media is cherry picking or distorting the quotes by leaving out context. This doesn't always happen but it is quite common in ME and CFS research.

    Bye
    Alex
    SOC likes this.
  9. SOC

    SOC Moderator and Senior Member

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    Thanks, Alex. As usual, you are a refreshing note of reason and common sense in an increasingly crazy situation.
  10. mellster

    mellster Marco

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    What I find hilarious and sad at the same time is that doctors (and the media) are so reluctant involving any drug/supplement treatments for treating ME/CFS but if you show up as a healthy control with the sniffles or acne they throw Antibiotics galore at you (with greetings from big pharma).
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Mistakes need to be made so we can learn from them. If WPI are making mistakes then they are learning and if they got it right first go then their just lucky. If it wasnt for WPI and xmrv then the PACE trial would really be gathering up steam and wessely would be our master.

    So i say let there be mistakes as there is so much for them to learn.

    cheers!!!
  12. beaker

    beaker CFS/ME 1986

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    sort of a little OT. I'm sure I'm not the only one who reads things and see words contorted into something else. :oops:I often am very
    amused when I finally figure out what it really says. maybe will help lighten things up for you too.:D
    (I put in bold what my brain first read. )


    The Waning Con?ict Over XMRV And Chronic Fatigue Syndrome

    OTTAWA, CANADALess than a day after a new study dealt what many
    consider a lethal blow to the controversial theory that a newly
    detected virus, XMRV, is linked to chronic fatigue syndrome (CFS),
    proponents and skeptics of the theory squared off in a meeting here.

    In one corner was Judy Mikovits, research director at the Whittemore
    Peterson Institute for Neuro-Immune Disease (WPI) in Reno, Nevada, and
    the main champion of the idea that XMRV and its relatives play a role
    inCFS. Her opponent, an erstwhile supporter,was heavyweight
    retrovirologist John Cof?n of the Tufts University Slacker School of
    Graduate Biomedical Sciences in Boston. When Mikovits and Cof?n took
    the stage at the meeting, which was organized by IACFS/ME (an
    international association devoted to the disease)and attracted 460
    researchers and patients, they sat on opposite sides of the lectern.
    During their introductions, Cof?n clasped his hands in front of his
    mouth, looking like a man in prayer who wished this would all stop.
    Neither addressed the other by name, and they avoided eye contact.


    ************ no offense to Tufts Sackler School meant !*****************
  13. SilverbladeTE

    SilverbladeTE Senior Member

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    Alex
    mate, wonderfully logical, sane person you (meant in genuine friendly agreeing way, as well as humorous and despairing of the R.I. Epidemic - Rampant Idiocy, contagious or not?!! :D)
    Expecting sanity, compassion etc especially in the News Media, Power Elite or Big Business, is like especting to find a left handed screwdriver, or that they could find their ass without a map and GPS! hehe :p

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