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You may wonder why the CAA treats XMRV the way they do... So:

Discussion in 'XMRV Research and Replication Studies' started by omerbasket, Aug 4, 2010.

  1. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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    It's certainly not a bias in favour of research into viruses or pathogens either - which, in the circumstances, we might justifiably have expected.
  2. Sam Carter

    Sam Carter Guest

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    The circumstances being 20+ years of looking for, and not finding, a consistent and reproducible viral / retroviral / bacterial cause. Why would you expect research budgets to be channeled exclusively into unproductive areas of study?
  3. garcia

    garcia Aristocrat Extraordinaire

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    Err because pathogens cause disease?
  4. Sam Carter

    Sam Carter Guest

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    Pathogens cause disease but ... err ... not all diseases are caused by pathogens.
  5. Cort

    Cort Phoenix Rising Founder

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    Because if you look at the research into retroviruses, EBV, HHV6 etc. you'll see alot of negative studies. That's started to change as researchers have refined their techniques and the science has improved. Pathogens got quite a bit of research ( at least for us :)) at one time and it just bottomed out. In fact the CFIDS Association stopped finding any grants at one point (apparently because they weren't getting many at that point) and used their grant money to put on a State of CFS Conference in order to drum up some more leads. Lately pathogens have re-emerged as better candidates.

    Its still very possible that pathogens cause some damage that causes CFS and then they fade away in some patients. That's what the Dubbo Studies suggest. On the other hand there's a good bit of anecdotal evidence from patients getting treated with antivirals - that difficult to detect pathogens are in play. Nobody,though, not the WPI or the HHV6 Foundation thinks there are good diagnostic tests for HHV6 or other infections in the central nervous system. This is a big problem. It and may very well take advances in technology before those infections become easily diagnosable.

    On the other hand there is alot of good evidence of low blood volume, vascular problems, natural killer cell problems, cortisol issues, increased oxidative stress, metabolic abnormalities, etc. Shungu, who is funded by the CFIDS Association, just found evidence of mitochondrial problems in the brain. There are LOTS of other things to study as well.
  6. V99

    V99 *****

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    A retrovirus is still a really good explanation for ME. Therefore, when a new one is identified it is worth having a look.
  7. acer2000

    acer2000 Senior Member

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    I think all of this research is very important. At bare minimum it lends credibility to the idea that CFS is a biological problem (which anyone who has it can tell you). However, people don't just one day have normal lives and then the next day have all the abnormalities that these studies show and the severe symptoms of CFS. Not without an intervening environmental cause, either a pathogen or a toxin.

    So as long as these basic science studies are used with the ultimate goal of finding what the upstream cause is, they are great. If they are taken at face value and the disease is defined as a "collection of abnormalities" and nobody goes any further, these studies aren't serving their purpose and the value of the data is significantly reduced.

    CFS, like many diseases in the past, looks way more complicated now than it will when the cause is found. And the cause will likely turn out to be simple and singular. Thats how the world works, its just not that complicated.

    Thats my 2 cents anyways.

    acer2000
  8. Sam Carter

    Sam Carter Guest

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    I trust you will be championing research into HTLV-III & HTLV-IV then?
  9. V99

    V99 *****

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    Yes, of course
  10. Dr. Yes

    Dr. Yes Shame on You

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    From v99:
    CBS, I think you have misinterpreted what v99 was saying. Garcia made the same point another way:

    Dr. Vernon's original statement was at least clumsy and inaccurate, and the implication, at least as written, is clearly that the inability of the CDC or others to find Dr. DeFreitas' retrovirus is positive evidence that retroviral infection is not involved in CFS. That implication is of course scientifically incorrect. Perhaps it was just a misstatement on her part, in which case she should correct it.
  11. Dr. Yes

    Dr. Yes Shame on You

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    There are a number of problems with Dr. Vernon's proposal "Consolidate & Connect CFS Research", but I will focus here on the citation she uses for the following statement:

    Reference 11 is a 2003 review article by Afari and Buchwald in the American Journal of Psychiatry (http://ajp.psychiatryonline.org/cgi/content/abstract/160/2/221)
    It is not the sort of article that I think the Science Director of our main patient advocacy organization should be citing at all, let alone as a good review of biological findings in CFS and of helpful 'management' strategies. Consider the following excerpts:

    Their references 131 and 132 are a couple heinous articles authored by Wessely and Peter Manu, respectively (Peter Manu was sort of the American precursor to Wessely and company).

    By the way, Afari and Buchwald do provide a gem of a statement (in a good counter-argument, actually):

    That one statement sums up so much that is wrong with 'psychosomatic medicine' in general (including the astonishing lack of any science whatsoever in it) and with its application to CFS in particular!

    However, they go on to present an argument that encapsulates much of the damaging beliefs that have led to the divide between the majority of ME/CFS patients and some at the CAA, CDC, CBT/GET advocates:

    They add:

    I am both perplexed and deeply concerned that Vernon considered this paper an authoritative source for information on the lack of physical findings in CFS and, even more so, on the successful psychosocial approach to management of the disease! Are these views representative of Dr. Vernon's own on CFS, or on the CAA's as a whole??
  12. Dr. Yes

    Dr. Yes Shame on You

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    But the only unifying hypothesis I can think of that can account for all those abnormalities, without requiring new understandings of human biology, is one of pathogenic causation or co-causation. And as acer2000 pointed out, those things by themselves represent a diffuse constellation of potential markers with only limited insight into pathophysiology.

    The CAA has been fishing for biomarkers too exclusively for too long; there are many problems with this approach, including the poor definition of the disease itself (even Fukuda would include overlapping, unrelated conditions) and therefore of 'true' patient cohorts, but also the basic problem that the search parameters are too wide... Looking for biomarkers is like looking for a needle in a colossal haystack (i.e. the sum of possible biological parameters interacting with the sum of biological and environmental variables). It would make far more sense for an organization with a very limited research budget like the CAA to formulate, based on available biomedical research, a set of co-existing hypotheses for the pathophysiology of ME/CFS and to look for evidence of the causal mechanisms posited by those hypotheses. This is exactly what the WPI did. Instead, the CAA - and many other researchers - have tended to investigate rather peripheral associations between disease and certain biological parameters that do not encompass a central hypothesis of disease causation and that in themselves would, at best, only suggest a possible correlating pathophysiology. As I said this has been the sort of piecemeal approach prevalent in the research community as a whole towards CFS, but the CAA was in the position to do what the WPI ultimately did: to focus on investigating a particular hypothesis of what is going on in ME/CFS, particularly one involving viral pathogenesis, for which the biomedical evidence (despite what Dr. Vernon asserts in the linked article) has always been the strongest.

    The CAA research strategy has been to cast a wide net and look for anything that correlates to (rather vaguely defined) illness in CFS patients, but with necessarily limited funding this has never seemed to me like an efficient approach. And even in the search for biomarkers they seem to have ignored two of the most compelling findings in ME/CFS research: abnormal SPECT, PET, and fMRI scans, and low circulating blood volume. To complement the work being done by the WPI and others, I would love to see the CAA expand efforts to look for these abnormalities in CCC-defined cohorts. The studies with Drs. Medow and Shungu hint in this direction, but are again essentially looking for different markers.

    My apologies for spamming!
  13. Robyn

    Robyn *****

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    Oh but I like the (It's all in your head) diagnosis. It's kind of grown on me. NOT! I wonder if the MS patients liked being diagnosed with hysterical paralysis for over 50 years until they figured out it had a biological cause. If you aren't looking for a cause you won't find it. And this is not directed at the CAA. It's directed at the medical field in general because I feel they all share some responsibility for keeping us sick this long. They are the ones that need to wake up. The antidepressant haven't worked. In fact nothing has worked. You can't have this many people with these same set of symptoms and noone ever get's well. Doesn't take a rocket scientist to figure out there's a problem.
  14. V99

    V99 *****

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    Sorry, I will not be very eloquent here, but that has to be one of the stupidest things I have ever read.
  15. V99

    V99 *****

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    I agree. It's been said before, but what ever happen to the science in ME.
  16. Robyn

    Robyn *****

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    It's being held hostage by the pysch community.
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    CBS- I don't see what you're saying. What V99 said is that Vernon said that ME is not caused by a retrovirus and that Vernon's statement is unsupported. CAA and other orgs should have been on top of XMRV. I totally agree with her.

    Cort- You stated that noone else (but WPI) was looking at XMRV so why single out CAA? I agree with V99 that every org should have funded this work. In this country the only orgs that fund any science on ME are WPI, CAA, NIH and CDC (and to a much lesser extent NCA) and we know we NIH and CDC have to be bludgened into funding any valid research, much less retroviral research.

    Also, you are claiming again that CAA is funding XMRV research, but when questioned about this on the last thread, you said that you thought they weren't funding it (just providing samples) and good for them for getting someone else to fund it instead of them.
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I totally agree- all the new human retroviruses need to be researched re ME: HTLV III, HTLV IV, but especially XMRV, the 'related' MuLV's that Dr. Alter reported he found in humans in the NIH/FDA study, and DeFreitas retrovirus. It's crazy this is not being done.
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Yes! This is outrageous.
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Beautifully put, Dr. Yes! I fully agree. I think CAA's current research program is good. That said, I think it would be a better use of resources to look more into etiology esp retroviruses. As long as we keep doing research along the lines of what CAA has been doing, we will always just be drowned out by the propaganda of the psychs, CDC and NIH, we will have no traction as always and things will change much too slowly.

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