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News of replication of WPI XMRV study...

Discussion in 'XMRV Research and Replication Studies' started by Wildaisy, Nov 26, 2009.

  1. mezombie

    mezombie Senior Member

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    Hope is powerful

    I just wanted to pass on this bit from the NPR show previously posted on this thread:

    John Coffin, a molecular biologist at Tufts University, says scientists have tried to blame other viruses for chronic fatigue and been proved wrong. But this time the evidence is stronger. And he says a retrovirus could explain why chronic fatigue can last a lifetime.

    Prof. COFFIN: Retroviruses in general give rise to infections that persist indefinitely. That's for all retroviruses: HIV and HTOV and many other retroviruses. By and large, once an individual is infected, the infection does not go away.


    This much we know. And what we know is definitely reason for hope.

    Never mind the rumors.
  2. Marylib

    Marylib Senior Member

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    A good rumour

    Hmmm, let's see....what about:

    "Brangelina spotted in parking lot of WPI."

    or

    "Barack Obama secretly infected with retrovirus designed to kill off GOP."

    or

    "Prince William looking more than tired after partying with ME support group til 3 am."
  3. dsdmom

    dsdmom Senior Member

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    I agree - the only 'rumors' I've seen are on this forum - what certain unnamed (I say unnamed because people wont' post who) scientists are saying. Since there seems no basis for this information at this point - that's what I call it - rumors.
  4. jenbooks

    jenbooks Guest

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    I did say it was a rumor; although stated directly to me. I thought it best to post in case it's true. A little caution is in order in case this doesn't pan out, isn't causative, or is causative in a minority. I worry people are pinning all their hopes on this. It's perhaps better to be hopeful but cautious. Then you can be pleasantly surprised but don't risk being painfully disappointed.
  5. Cort

    Cort Phoenix Rising Founder

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    There definitely are rumors floating around. One I heard is that - for better or for worse - studies will probably start coming out in December. We'll see.

    The CDC started testing samples the day after the Science paper came out. By the Oct 28th CFSAC meeting - a month ago - Dr. Miller told me they'd tested 100 CFS samples and 20 samples from the WPI. They must have done many more by now (if they were able to get more samples - they were asking for samples from ME/CFS physicians).

    I would think the CDC could get a paper published quickly; they generally publish through a free electronic journal; once the data is in and its reviewed they can get it on the web very quickly I would think.
  6. Christopher

    Christopher Senior Member

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    That's fine. But it's just as risky to start spreading rumors on the opposite spectrum as well. I'm not attacking you personally, jen - I just think we should spend our energy focusing on official published data such as the Science article and any other published news that comes out.

    Positive rumors about the link between XMRV and CFS are just as dangerous as negative ones. It's such an emotionally charged topic for everyone invested that even recognizing that these are just rumors will not help us get too up or too down.

    Let's hope for the best :)
  7. Christopher

    Christopher Senior Member

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    Thanks Cort. Are they still at the stage of just verifying correlation between symptoms and the virus?
  8. If I am going to be drowned...

    I pray there is some scientific foundation for this guy's claim of 'reasonable certainty' ( what does that even mean?). He also mentions 'reasonable doubt'.

    I cannot/will not let myself believe anything I read yet. I need to know if xmrv is causative, I need to test xmrv positive, and get treatment that makes me feel better. I cannot bear to be jerked around on an issue of this magnitude. Science has left us twisting in the wind for soo very long now. I want to see the money. Yesterday.
    ______________________

    Excerpt from Stephen Crane's 'The Open Boat':

    "If I am going to be drowned--if I am going to be drowned--if I am going to be drowned, why, in the name of the seven mad gods who rule the sea, was I allowed to come thus far and contemplate sand and trees?"

    During this dismal night, it may be remarked that a man would conclude that it was really the intention of the seven mad gods to drown him, despite the abominable injustice of it. For it was certainly an abominable injustice to drown a man who had worked so hard, so hard. The man felt it would be a crime most unnatural. Other people had drowned at sea since galleys swarmed with painted sails, but still--

    When it occurs to a man that nature does not regard him as important, and that she feels she would not maim the universe by disposing of him, he at first wishes to throw bricks at the temple, and he hates deeply the fact that there are no brick and no temples. Any visible expression of nature would surely be pelleted with his jeers.

    Then, if there be no tangible thing to hoot he feels, perhaps, the desire to confront a personification and indulge in pleas, bowed to one knee, and with hands supplicant, saying: "Yes, but I love myself."

    A high cold star on a winter's night is the word he feels that she says to him. Thereafter he knows the pathos of his situation.
    _______________________
  9. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    > Mentally ill person loves to use the words CFS it legitimises their mental problem, they can be depressed and feel worn out and can't sleep since their boyfriend left them and they lost their job.

    Just FYI, multiple groups have reported sharply elevated inflammatory cytokines in major depression. One was a quite convincing study from Harvard. This is a mainstream hypothesis, though multiple other groups have not found this connection.

    It is also the case that injection of cytokines into hepatitis and cancer patients causes major depression and fatigue. This result is highly confirmed by over a dozen labs, with little or no dissent.

    There is basically no strong evidence that major depression is usually caused by stress or emotional issues. Particularly long-term major depression. The disease is mental, but the use of the term "mental illness" is possibly a great misfortune for those people, since it suggests a mental *etiology* which likely doesnt exist.
  10. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    > I cannot/will not let myself believe anything I read yet. I need to know if xmrv is causative, I need to test xmrv positive, and get treatment that makes me feel better. I cannot bear to be jerked around on an issue of this magnitude. Science has left us twisting in the wind for soo very long now. I want to see the money. Yesterday.

    Me too, but it may be a long ride, even just to get causality. Have you heard of HIV denialism? It has a presence on the web, and, bizarrely for a bunko theory, it has a presence in the US National Academy. Whats left is a rump of tinfoil-hatters, but I believe that there were reasonable skeptics until the HAART treatment came out.
  11. fresh_eyes

    fresh_eyes happy to be here

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    In spite of everyone's sensible advice, for my part I still want to hear rumors (when they're posted as such, naturally). Useless though speculating may be, I'm doing it. And I've come to terms with the possibility that the future holds heartbreaking disappointment for me. Way too late for me to be protected from that. I've even told all sorts of people about XMRV, when I had spent recent years in the illness closet. I figure I'll enjoy feeling hopeful and optimistic for a change, for a while; it feels good, after so long. Who knows, maybe it will even pan out. My $.02.
  12. jenbooks

    jenbooks Guest

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    Wow Bluebird

    The whole passage is brilliant but I just excerpted that quote. How often do I think the equivalent? One does end up taking it personally...
  13. Esther12

    Esther12 Senior Member

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    Me too really. I know my xmrv google obsession is a bit nuts, but I think the hunger for more info would be hard to control, so I've just gone for it.

    At the CFS conference just after the Science paper, it was said that the US blood service would make an announcement re CFS blood donation arround mid-November. Any news on this?
  14. flybro

    flybro Senior Member

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    Compelled to understand & overcome

    These last couple of months have ran past.

    Everyday since I first heard about XMRV, I have to look everyday for more news.

    I've also found a few good homes on the net, and some fantastic ppl.

    Not to mention how much I am learning about me, & ME. How intwined XMRV has been in my life, I am learning to seprate out that which is I and that which is ME or XAND-ME.
  15. hvs

    hvs Senior Member

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    Mmm, thoughtful people can definitely disagree on this, but I'm not convinced by arguments that the WPI (and NCI and CCF) found sick people because they studied people who were sick.

    I think they studied people with classic biomarkers and found that people with classic biomarkers had XAND. If people without classic biomarkers eventually do not test positive for XMRV (or antibodies), they might not have this thing we're calling XAND. It is not the WPI's responsibility to catch everyone; the Science paper doesn't claim to have identified the Grand Unifying Cause of everything.
  16. Interesting, however anyone with a chronic disease would be expected to have increased rates of depression, and these diseases would include inflammatory disorders. Failing that un-diagnosed immune disorders also - namely ME (CFIDS) could masquerade as depression, as there is no diagnostic test and many patients doctors refuse to diagnose ME (CFIDS) and tell people they're depressed.

    Failing that. Severe pain leading to disablity, wheelchair use etc - is not a symptom of depression. Inflammatory cytokines are off the scale in ME (CFIDS) and not in depression - most importantly post exercise. People with depression do not report flu like feelings at baseline (flaring on exertion), or burning pain at all.

    To compare the two is interesting, e.g. to note that psychological states (a state of low mood) may share common features of disease, yet the levels of what is being compared are different.

    In depression one's blood sugar raises after a meal.
    In diabetics with pancreas damage one's blood sugar raises after a meal.

    This could be then stated that 'raised' blood glucose after a meal in diabetics
    is found in depressed people also and both conditions share a common feature.

    Yet without insulin a diabetics blood sugar may hit 50, and a non diabetic 9 - which is normal.

    Inflammation at rest to a damaging level to endothelial tissue through oxidative stress (as report by ME Research UK) is a feature of ME (CFIDS) XMRV? that is unique to this condition.

    The report I read from ME Research UK showed it is so bad in ME (CFIDS) that patients at rest doing nothing, have more oxidative stress/inflammation than those without ME (CFIDS) post work out on an exercise bike. I've got a transcript of my notes of a presentation I've got that youtube deleted, so for that reason I've deleted the names below. It was published though as somewhere in a pile
    of papers I have the magazine with the same study available to the public! Silly youtube, or should I say silly MERGE who claimed copyright after giving away a FREE DVD.



    Here we go: Vascular & Inflammatory aspects of chronic fatigue syndrome
    -----------------------------------------------------------------------

    *CFS/ME patients form a part of 'connective tissue' disorders. Of the people seen in clinic - a Seminal 72% of *censored by youtube* referrals were ME/CFS patients. *censored by youtube* decided to find out why in the early 1990's - as there was no education about ME/CFS patients as undergraduates and no diagnostic test or treatment for this disease. ME/CFS is still under recognised, under diagnosed, under investigated & under trained all these years later. Patients pushed themselves (as they weren't aware they had ME/CFS) and become more unwell - and prolong their incapacity.

    2) Iontophorisis test has been developed (safe & painless) to investigate cholinergic induced pathological dilatation of blood vessels. Blood flow measured using Lazer Doppler flowmetry (LDF).
    This shows how quickly the blood is flowing, and how 'open' the blood vessels are.

    3) Iontophorisis test shows enhanced vasodilation of blood vessels (too open) in ME/CFS. This is the exact REVERSE of Coronary heart disease. Explains circulatory symptoms of dizziness/flushing/swelling of ankles & feet when upright.

    Trying drugs to combat this (that vasoconstrict blood vessles) cause side effects and beta blockers simply increase tiredness. Compression stockings are thus the only current recommended therapy.

    4) Oxidised lipids (rusted by free radicals) in ME/CFS are raised. *Isoprostanes*. Free Radicals - enhanced oxidising 'rusting' of the body in ME/CFS. Free Radicals cause inflammation in ME/CFS. Free Radicals promote production of prostocyclines.

    5) If you oxidise lipids the long terms risks are 'increased coronary risk' - e.g heart attack/stroke. Lipids are fats. If you oxidise fats (rust it) you produce atheroma plaques. Atheroma's are dangerous. Patients with long term disease may be at increased risk of cardiovascular disorders. For this reason in the *censored by youtube* where *censored by youtube* works (Only *censored by youtube* clinic, not nationally), ME/CFS patients are screened for 'cardiovascular risk factors'.

    6) One of the key triggers of oxidative stress is exercise - because exercise causes oxidative stress. ME/CFS post infective group (FUKUDA CFS Criteria) had very high levels of inflammatory oxidised chemical in their blood after exercise.

    7) The level of Isoprostanes (that cause oxidative injury) are so high that ME/CFS patients BEFORE being tested ....are HIGHER than controls - post exercise. 'So no wonder the patients feel unwell.

    8) The LEVEL of these oxidised lipid, correlates with the level of 'post exertional myalgia' - in other words you can FINALLY PROVE the amount of PAIN you are in - because the level of oxidised lipid in your blood SHOWS this. Antioxidant therapy does not significantly help the problem.

    9) Inflammation also shown in a 'CRP High sensitivity test'. Higher in ME/CFS, genuine abnormality not shown 5/10 years ago in lower sensitivity tests.

    10) The effects of all this? The findings mimic the effects of ATHEROSCELROSIS (hardening of the arteries - coronary disease) which is also a vascular and inflammatory disease state. What is the link to ME/CFS? Probably damage to endothelium caused by activated white cells that release chemicals that causes damage to blood vessels and inflammation. Other diseases such as Rheumatoid arthritis (auto immune disease) also have increased cardiac risk - to the extent that 40% of arthritic patients die from cardiac events.

    11) The consequence of all this oxidative injury & pro inflammatory state ME/CFS patients bodies are in, is that cells are programmed to die off quicker, a process called apoptosis, and thus as predicted - white cell apoptosis is INCREASED in ME/CFS patients. Proving 'very definite' inflammation, 'allowing us to designate this disorder as truly physical'.

    12) The findings in ME/CFS of Vasodilation, Inflammation, Oxidative Stress, Increased Apoptosis - may explain some of the symptoms and give possible targets for intervention, but 'obviously this is a few years away I'm afraid'.


    ----------------------------------------------------------

    Depression does not have this, only ME (CFIDS) does. Hence none of us can exercise, or graded exercise our way to increased health as it's pathalogically damaging and the 'pain' we report is very real, and testable.

    Unlike in depression, who's sufferers report no pain and who say that exercise lifts their mood and reduces their levels of mental disabilty.

    It is quite probable that ME (CFIDS) XMRV? shares some vague immunological features with depression - both share brain dysfunction.
    Yet depression brain scans are the reverse of ME (CFIDS), and ME (CFIDS) has increased serotonin levels, and 5HT receptor sensitivity.
  17. flybro

    flybro Senior Member

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    pluto
  18. flybro

    flybro Senior Member

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  19. calzy

    calzy Senior Member

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    Howard Hughes Institute

    I think the institue is working on xmrv in some fashion. This institute has an endless amount of $. I wonder if anyone has tapped into them?
  20. Cort

    Cort Phoenix Rising Founder

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    So interesting Cold Taste - it was nice to see it all put together- the vascular system in this disease is sooo intriguing. I remember some findings suggesting high levels of arterial stiffness were found. MERUK did that as well. It blows my mind that the research community as a whole just does not seem to give a damn about all this with all this interesting research out there!

    All I heard about were the direct attempts by the CDC to replicate the WPI'S results. I don't know if they've gone any further but I would think they would publish those findings immediately.

    Love that quote. Brought tears to my eyes actually. That guy was good!

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