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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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The Fight is on...Imperial College XMRV Study

Discussion in 'XMRV Research and Replication Studies' started by George, Jan 5, 2010.

  1. _Kim_

    _Kim_ Guest

    I've made a new forum for full-text research papers on ME/CFS - The Library. This forum is a 'private' forum, only accessible to senior members (>100 posts). [Note:It is considered copyright infringement if full text papers are published in a public place]

    I posted recent papers (2009+) in that forum that other members would not have full-text access to. I have not included those papers that are open source, but they need to be included. I would encourage any of our senior members to help me with this project. If you are discussing a paper, please add it to the library with a link to the full-text version of the paper or attach a pdf file if that is available. If you are trying to access a paper that is not available as full-text, post a request in the Welcome post in the library. There are several of us here with access to University libraries that can dig it up.

    p.s. In changing the permissions settings, I also upgraded the senior members' PM allowance to now hold 100 messages.
     
  2. flybro

    flybro Senior Member

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    Anothe response from McClure to JohnM on plos one london IC wessley study

    http://www.plosone.org/annotation/listThread.action?inReplyTo=info%3Adoi%2F10.1371%2Fannotation%2F6bfbac4a-5ace-4a2d-a9bb-60f017ae24d8&root=info%3Adoi%2F10.1371%2Fannotation%2F6bfbac4a-5ace-4a2d-a9bb-60f017ae24d8

     
  3. Advocate

    Advocate Senior Member

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    What do the patients diagnosed with XMRV have in common?"

    I've just read Mary Scweitzer's new essay and realized that she is asking the most important question: "What do the patients diagnosed with XMRV have in common?"

    I think we are missing the boat on this forum. There are now 12 people who have said in the poll that they are xmrv positive. Plus there's a little girl with autism whose mother might participate.

    I'm losing interested in whether people fit this criteria or that criteria. I'm losing interest in whether a collection of symptoms is called ME or CFS or ME/CFS or...

    How can we find out for ourselves what xmrv-positive people have in common? For example, how many of them have orthostatic intolerance? Wide symptom exacerbation caused by physical exertion? By mental exertion? RnaseL results? NK cell dysfunction? On and on.

    Does anyone have a list of those who have tested positive?
     
  4. Good job in bringing this thread a bit more back to the topic in question.
    I think the place for that would be in the poll thread? Or maybe start a new thread?
     
  5. _Kim_

    _Kim_ Guest

    Not even the Administrators know who posted their results on the polls - it's private. I think this is a great idea for a new thread/poll. Who's up to starting it off?
     
  6. Koan

    Koan Be the change.

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    I'm so confused! (That really should be my nic!)

    Anyway, didn't someone start a thread just this weekend for sharing findings and symptoms of the XMRV+ members? I think so.
     
  7. _Kim_

    _Kim_ Guest

    I've been in the Library and hadn't seen that thread. Here it is: profile of positives. I am going to change the thread title so that it is a little more descriptive.

    ETA: Now changed to: XMRV Positive? What are your symptoms/medical history?

    I can add a poll, but I'm not up to figuring out what should be the poll options. If anyone has ideas for the poll, please post them on THAT thread. Thx.
     
  8. susancal112

    susancal112 Guest

    at least there are 10 more studies that will be finished in the next year, so im not too pessemistic
     
  9. kurt

    kurt Senior Member

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    Dr Cheney has presented a fairly well-developed model of the stages of CFS, and its progression. His model has three stages. Sorry I do not have the details, but I believe it is somewhere on the Dallas CFS association website. Also, here is another summary, from ProHealth.

    As far as biomarkers to track a case, that goes back to what I was saying before, the types of testing that already are available involve immune and endocrine function, HHV viral loads, and also testing for some of the more exotic infections (mycoplasma, lyme, rickettsia, etc.). One that was talked about a few years ago is CD26, a simple immune depletion test that may relate to the NK defects found in CFS. An adrenal stress profile can be run every few months if a person wants, that shows a lot and is inexpensive. Often this shows elevated cortisol levels in the early stages of CFS, then depletion later on. Also, a good liver detox profile will show how well the liver phase I & II are functioning, including glutathione levels and sulfatization. Also, orthostatic intolerance and post-exertion malaise can be tracked over time. Then there are SPECT and PET and MRI studies, various hormone levels, mitochondria function and ATP, neurotransmitter levels, etc. There are probably other significant biomarkers I am leaving out, these are just the ones that I can think of right now.

    I think the problem with biomarkers for CFS is the reductionistic thinking that is continuing even here and now with the XMRV hypothesis. People seem to think that there can be a single 'super-biomarker' for CFS, but that is really, really unlikely given the systemic complexity of this illness. Rather, I think we need to use systems biology principles, and that will mean a group of biomarkers, such as is used to diagnose and track progression of complex spectrum type disorders. A suite of tests, for example, 20 biomarkers, and if a person is positive on more than 10 of them they have ME/CFS, or something like that. Then over time one would have to track all the biomarkers. Some of the better CFS doctors already take this approach, but the problem is that the CDC and NIH do not seem to accept that CFS is in fact a spectrum of multiple co-occuring and interrelated problems that CAN be proven in lab testing. So they try to use symptoms to diagnose the illness, such as 'if a person has four of the following eight symptoms' they have CFS. That is just ludicrous given what we know now. They still say 'there are no lab tests for CFS' and do not seem to accept the mountain of hard evidence in the existing research base. True, many of the studies showing hard evidence of biomarkers have not been replicated and elaborated, but that is not due to a lack of CFS biomarkers, but rather due to the lack of CFS research funding!

    These governing medical organizations really need to transition into the modern world, we are suffering because they refuse to embrace systems biology and allow CFS to be re-defined as a multi-factor spectrum disorder with multiple biomarkers. That type of re-branding of CFS would immediately put us on par with other diseases such as MS that also are complex spectum disorders with unknown multiple causes but evidence of physical damage and/or disregulation.
     
  10. Dr. Yes

    Dr. Yes Shame on You

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    From Kurt:
    They do claim to embrace that idea, but all they mean by it is embracing the idea that psychological disorders can create physical symptoms (the old psychosomatic angle again). They refuse to accept the concepts of physical systems biology, for e.g. that there can be common physical mechanism(s) that can have wide-ranging pathological effects if impacted by a single or by several physical causes. I've seen seasoned medical researchers roll their eyes at the very idea of such complexity in a disease... but what could be more complex than our biological systems (that they supposedly study)?

    But I think another problem is their adherence to the old stigma about "chronic fatigue" relating to 'malingering' and hypochondria. They take very seriously other established neurological/ genetic disorders with wide spectrums of symptoms and even aetiology, but somehow are unwilling to do the same about ME/CFS.

    The Mikovits/Kerr research proposal that was recently funded (pretty poorly, I think, but whatever) by the NIH looks very good in this regard, and is the most comprehensive attempt I've yet seen to make sense of the whole situation.
     
  11. starryeyes

    starryeyes Senior Member

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    Thanks for the Library and xtra PMs Kim. :sofa:
     
  12. kurt

    kurt Senior Member

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    So maybe what is really needed is a diagnostic criteria for 'malingeriasis' and 'hypochondriasis.' Then teach the physicians how to make a differential diagnosis. Just two more conditions to 'rule out' right?
     
  13. Lily

    Lily *Believe*

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    :worried:DSM-IV & DSM-IV-TR:
    Hypochondriasis

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

    When a patient remains preoccupied with the fear that they have a serious medical illness despite the fact that medical evaluation has ruled out such an illness, this Somatoform Disorder can be diagnosed. Although the belief is not of delusional intensity, attempts at reassurance fail.

    Diagnostic criteria for 300.7 Hypochondriasis
    (cautionary statement)
    A. Preoccupation with fears of having, or the idea that one has, a serious disease based on the person's misinterpretation of bodily symptoms.

    B. The preoccupation persists despite appropriate medical evaluation and reassurance.

    C. The belief in Criterion A is not of delusional intensity (as in Delusional Disorder, Somatic Type) and is not restricted to a circumscribed concern about appearance (as in Body Dysmorphic Disorder).

    D. The preoccupation causes clinically significant distress or impairment in social, occupational, or other important areas of functioning.

    E. The duration of the disturbance is at least 6 months.

    F. The preoccupation is not better accounted for by Generalized Anxiety Disorder, Obsessive-Compulsive Disorder, Panic Disorder, a Major Depressive Episode, Separation Anxiety, or another Somatoform Disorder.

    Specify if:
    With Poor Insight: if, for most of the time during the current episode, the person does not recognize that the concern about having a serious illness is excessive or unreasonable

    Reprinted with permission from the Diagnostic and Statistical Manual of Mental Disorders, fourth Edition. Copyright 1994 American Psychiatric Association:eek::eek::eek:
     
  14. Lily

    Lily *Believe*

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  15. Dr. Yes

    Dr. Yes Shame on You

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    Thanks Lily, for posting that. The whole somatoform disorders stuff is just... I'm in a bad mood right now so I won't even look for a word.

    What a coincidence that one of the criteria they give is that the patient must have had it for at least 6 months.... Hmmm... Where have I heard that before?

    I actually masochistically looked up the link you gave about how to diagnose malingering, and this is my favorite bit, and I think it's something of a classic:

    Did you ever see the movie "The Fortune Cookie"? There's a foreign doctor who suggests a technique they used in 'the old country' to tell whether someone is faking disability -- throw him in a pit of deadly snakes; if he jumps up to save himself, he was faking it. "But what if he wasn't faking it?" he is asked. "Well, then at least he dies an honest man!"
     
  16. flex

    flex *****

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    This is so true, just look at MS. Some people can live their lives relatively unaffected. Others can have speech issues only. The next person may be confined to a wheelechair unable to move their legs. Another may have no problems with their legs but be unable to use thier arms - and of course they are also cursed with overwelming "fatique".

    This is all dependent on the positioning of the scelrosis (scars) in the CNS. Hence the name Multiple Scelrosis!! MS is an auto immune disease. Why is ME/CFS such a difficult biological concept for the medical profession to grasp as if it has no precedent.

    Of course, it does have a historical precedent in the sense that MS sufferers were maligned and derided for being malingerers. This stopped over a hundred years ago with simple biological progress with understanding taken mainly from autopsy. Why would this be hard to do in ME. Let alone all the proven bio markers!!

    I'll tell you why. Insurance companies and "evidence based medicine". Most people don't realise that even people with MS are having their diagnosis withheld by doctors afraid of goverment and insurance companies. If the "computer says no" then it doesn't matter about all your signs, symptoms other biological tests. One" Normal" MRI "the diagnosis "GOLD STANDARD" and you are "medically unexplained" regardless of all signs, symptoms, other medical tests. This is all in a long accepted, understood illness. What they dont tell you is MRI often miss the scars in MS and the machines they are using are low magnet field namely 1.5t. New 3T machine are upto 30% more able to pick up CNS damage. The next generation machines go up to 7T.

    The insurance industry has got it all sewn up with this "evidence based" medicine. The doctors are either ignorant, negligent, running scared, or moonlighting for insurance companies.

    Furthur more how many of us initially went to the doc complaining of "stress" or "depression". How can such issues be DIAGNOSED UPON YOU if you are not even complaining of the symptoms of such SUBJECTIVE illnesses. We live, we love, we laugh, we cry, we feel happy, we feel sad, we over work, we sometimes laze about. THIS IS THE HUMAN CONDITION!
    Since when were such experiences "Illnessess". A psche forcing this diagnosis on you is like a doc telling you you are in pain when you are not.

    Then to go on and say that the human experience is the cause of you physical illness with no objective markers of such and a patient not complaing of those symptoms is beyond contempt!!

    What would the psyche lobby want to do? Perhaps remove all human experience to protect us against their subjective illnesses. Yes, obviously!! Their answer is psychtropic medicines which if we resist we are "Malingerers".

    All done under control of the state.

    "AND, I SAY TO MYSELF...WHAT A WONDERFUL WORLD"!
     
  17. kurt

    kurt Senior Member

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    This shows how doctors who mistake CFS for Hypochondriasis without a serious CFS medical evaluation lack the critical thinking skills to be a physician. There may be a few similarities but look at the differences. False beliefs do not produce CFS biomarkers such as HPA levels off, bad liver detox profiles, low NK function, lesions in the brain, failing a stress test, etc. False beliefs do not create the extreme fatigue unrelieved by rest. The differential diagnosis is simple, test the patient for a few of the many known CFS biomarkers. A true hypochondriac will probably not want to even take the tests, afraid of needles, stress tests, etc. Or if the doctor is too busy to give a test, just ask a series of questions about their daily activities, their response to exercise, types of sleep issues, etc., things only a PWC would know. Physician ignorance about CFS is really one of our largest problems, collectively speaking.
     
  18. Lily

    Lily *Believe*

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    Absolutely!!! And maybe this is the basis for yet another poll, lol.........how many of us have had any of this testing, and or EBV, CMV, HHV6 etc?
     
  19. Mark

    Mark Acting CEO

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    While I think of it, here's a relevant maths/probability calculation I've been doing quite a bit recently...

    Two US prostate cancer studies, the WPI XMRV/CFS study, and a Japanese study, have all reported XMRV infection rates in the general population of between 1.5 and 6 percent. What are the chances that an accurate test for XMRV fails to find any XMRV whatsoever in a population that has XMRV?

    If there are N patients tested (Imperial College study N=186 as I recall), and the XMRV infection rate in the general population is x%, then the probability that none of these N patients has XMRV is:

    ( (100-x)/100 )^N
    (probability of not being infected, to the power N).

    So for the IC study, if there is XMRV in the UK then the probabilities are:

    1% infection rate: 0.99 ^ 186 = 0.15 = 15% chance that none of 186 people have XMRV
    2% infection rate: 0.98 ^ 186 = 0.02 = 2% chance
    3% infection rate: 0.97 ^ 186 = 0.003 = 0.3% chance

    SO: Even if you accept that there is no connection whatsoever between XMRV and CFS, you can still conclude from the IC study that:

    EITHER the UK has a very low overall XMRV infection rate - lower even than reported by Japan - 85% likely to be less than 1%, 98% likely to be less than 2%, 99.997% likely to be less than 3%

    OR the Imperial College test doesn't work and doesn't detect XMRV at all.

    OR Simon Wessely's psychotherapy is so effective it kills XMRV.

    (Hint: it's not the last one)

    Also note that any evidence whatsoever of XMRV infection rates above 1% in the general UK population would also be evidence that it's very likely the IC's XMRV test was faulty.

    We could also say that since US and Japanese studies - for both prostate cancer and CFS - have both found XMRV in their populations, and if we assume that implies the infection has spread globally (and thus almost certainly present in the UK at over 1%), then either the US and Japanese prostate and CFS studies have a faulty XMRV test, or the IC study does.

    Of course, since the IC study featured at least one researcher who has somehow managed to build a career out of failing to replicate other people's politically inconvenient research, it's all pretty academic, but hey, it's something to do while we're waiting for some more genuine science to escape the net...
     
  20. Awesome work Mark. Thanks!
    So McClure was wrong when she said 'if it was there we would have found it' - they might well need a bigger cohort.

    Rachel xx
     

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