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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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XMRV Replication Studies

Discussion in 'XMRV Research and Replication Studies' started by Cort, Dec 5, 2009.

  1. CBS

    CBS Senior Member

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    Iacfs/me

    And while they are at it, someone (or someone's graduate assistant) at the IACFS/ME needs to do a meta analysis of all the chronic fatigue and CSF and ME (and whatever other categories they create) studies done so far to properly assess the findings associated with each group of patients.
     
  2. fresh_eyes

    fresh_eyes happy to be here

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    I'm going a little OT here, but Shane, have you seen Leonard Jason's work at DePaul?

    http://condor.depaul.edu/~ljason/cfs/

    I was not aware that such a research center existed, and wish they gave more info about those research projects. Looks like they might possibly be interested in doing something like you suggest above.
     
  3. CBS

    CBS Senior Member

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    IACFS/ME and case definition

    Hi Fresh Eyes,

    Yes, I am aware of the DePaul group and Dr. Jason They have written about this problem, at least in terms of pushing back against a further blurring of distinctions by adding PMS and other disorders into one large functional somatic syndromes group (http://condor.depaul.edu/%7Eljason/cfs/press.html#Letter%20to%20the%20Editor:%20%20Dangers%20in%20Collapsing).

    While I appreciate the work done at DePaul, who better than the IACFS/ME board (Kerr, Klimas, Vernon, Friedberg, et. al.) to take the lead on this?
    Shane
     
  4. fresh_eyes

    fresh_eyes happy to be here

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    I *think* Jason is on the IACFSME board as well. I really don't know a huge amount about the IACFSME - I mean, I've seen their web site and their board members are familiar to me, but...Do you have particular reasons that you want to see them pursue that? Have you considered contacting them?
     
  5. CBS

    CBS Senior Member

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    The reason I think the IACFS/ME is the group to do this is because their focus is first and foremost research and the IACFS/ME is seen as THE association of professional scientists working on CFS/ME. They not only know the issues, they know the obstacles and how it will be received. As leaders in research they could do a huge deal of good by "inoculating" the field against bad design and already discredited biases.

    Yes, I have considered contacting them. Anyone care to join in drafting the letter? I am also going to discuss this with Dr. Montoya at my next visit in February as I am sure he has an insider's perspective on how this will be received and best promoted.

    Shane
     
  6. fresh_eyes

    fresh_eyes happy to be here

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    Makes sense to me, though I'm afraid I don't I have the science brain for helping with the letter.

    Have you seen the computer modeling project in the CAA's 2008 annual report?

    http://www.cfids.org/about/annual-reports.asp

    p 11
     
  7. CBS

    CBS Senior Member

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    Meta analysis

    Fresh Eyes,

    Thanks for directing me to Computer Modeling project. If done right and the cohorts are carefully defined, this projects seems to hold a great deal of potential for the type of meta analyses I suggested earlier. Again, the category definition/cohorts will be key. Overlooking that one detail could render an endeavor like this meaningless.

    Shane
     
  8. fresh_eyes

    fresh_eyes happy to be here

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    Yeah, I thought so too. Might be worth getting in touch with that guy (Bud Mishra @ NYU, looks like).
     
  9. CBS

    CBS Senior Member

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    CFS Cohorts in Meta analysis

    Because no two studies are identical, meta analysis requires some grouping on the primary variables being reviewed. Unfortunately, with CFS the cohorts are often heterogeneous. Dr. Mishra would definitely know how this is being addressed within his own lab. I'll e-mail and ask if he could share that with us.

    Shane
     
  10. kurt

    kurt Senior Member

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    Someone probably has already conducted a comprehensive literature review for major themes in CFS. That would be interesting to read. However, a lit review usually has a narrow focus, looking for one topic. For instance, I just found this review of disability-related CFS literature:

    http://www.ahrq.gov/CLINIC/epcsums/cfsdissum.htm

    Out of 3,840 citations reviewed only 58 qualified for their review.

    A true meta analysis seems like a difficult or impossible task given the lack of a singular model, the general heterogeneity of the research base. But a targeted literature review might be interesting.
     
  11. CBS

    CBS Senior Member

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    Cohorts, what cohorts?

    Kurt.

    A key finding from the study of CFS related disability:
    It should be noted that this study is 7 years old and 58 studies is a greater number than are included in most meta analyses.

    That said, I agree. I suspect that there is so little research with a tight enough definition of CFS/ME and so few replication studies that a meta analysis of any meaningful variable from a well defined cohort isn't possible. Rather, what would be found is that any potential for a meta analysis most likely exists for patients with long standing fatigue.

    If this turned out to be the case, it's a pretty good start on the argument for developing a tight set of cohort definitions - for past and more importantly, future work.
     
  12. fresh_eyes

    fresh_eyes happy to be here

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    Thanks for pulling all that together, catch. While much of what Lloyd says seems unobjectionable, the way he (mis)represents the major symptoms of CFS is a *big* red flag from my point of view.
     
  13. Robin

    Robin Guest

    That was interesting, Catch, thanks for putting that together even though it was probably very unpleasant!

    It's tough to reconcile Cort's post with yours. Then I realized that what caught my eye in your earlier post was Lloyd taking note of the higher CD8 cell counts in sicker patients, right along with psychiatric comorbidity.

    Reeves, Wessely, White and Lloyd uncover physical dysfunction in their own studies, and yet persist on their psych theories and seem to be unbothered by this contradiction. Why? I know that psychiatric illness can disrupt immune system and endocrine function, but so can physical illness. What exactly leads them to the unremitting insistence on their psychological theories?

    If you were a researcher that knew NOTHING about ME/CFS, and looked over the studies and the various theories, what would you conclude?
     
  14. fresh_eyes

    fresh_eyes happy to be here

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    From Cort's article on Lloyd from '06 (emphasis mine)
    http://aboutmecfs.org/News/PRFeb06.aspx

    Seems pretty clear where Lloyd stands - the brain has been damaged by a virus to cause a perception of fatigue & pain.
     
  15. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    Just to be the pedant that I am, note that "psychological" is certainly a fair description of say depression, in the abstract, if one sets aside how the word might be mis-perceived. But in practice, everyone mis-perceives it!

    Everyone perceives that it means these illnesses have a psychological origin or cause, not merely a psychological nature. But that is not established. I am one who believes it likely that no psychogenic diseases exist, except maybe PTSD. Many groups including some in high places (Harvard) find that elevated cytokines are a likely cause of major depression; however this is hotly disputed.

    Of course, in science we assume without overwhelming proof that the psyche is made of neurons and their actions, because there is no way to address the psyche scientifically if this isnt so. I still believe that a fairly clear distinction between psychogenic and physiogenic can be made. The former occurs via experiences, via what comes into the "psyche" and how it is processed. An event in the psyche should precede any physical change that can be summarized in the sense of "a great percentage of dopaminergic neurons in the substantia nigra died". The physical changes that correspond to an event in the psyche presumably lack this simplicity; they should instead contain incompressible information such as "this neuron fired, then this one and this one, and 25 milliseconds later, this one did", etc.

    I do think that a pyschogenic disease, if any exist, could cause summarizable, compressible physical events that are causally downstream of the disease cause. For example, depression *could* be psychogenic, and the psyche could, eventually, cause the elevated cortisol found in something like 1/2 of depression patients. The cortisol change could even be upstream of the depression experience (altered qualia and behavior). But only a psychological-neural phenomenon with no simple physical description can be at the top, if it be a psychogenic disease. If a great percentage of dopaminergic neurons in the substantia nigra die, this too could have a psychological cause -- but only if the less-compressible psychological phenomenon happens first.

    So yeah, depression-ologists often take depression to be psychogenic and yet to very often show elevated cortisol. Lloyd is doing the same thing they are doing. The only absolute reason to believe that Parkinson's disease is *not* psychogenic is because the correlated physical phenomenon (death of dopaminergin neurons in the substantia nigra) is more spectacular than elevated cortisol.

    Actually there is one more reason. Most diseases lower fitness and there should, ideally, be some reason why they occur nevertheless. I think many people find it easier to see how psychogenic depression could happen nevertheless, and cant see why psychogenic Parkinson's could happen nevertheless. I dont really agree, but it would take another page or two to explain.
     
  16. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    One can say "increased perception of fatigue and pain". But it is not immediately clear what that means. Its not clear to me that Lloyd would actually consider this different from plain old "increased fatigue and pain".

    Such a difference is distinction is very difficult to support on a logical-philosophical level. He may have just written unclearly, and may not have meant to support such a distinction.

    On the other hand, he may well have actually meant to support it, logical or no.

    He might also have meant that the subjects probably have the same pain qualia, yet are more distressed by it. This could be for physical or psychical reasons. But actually this too is a distinction that is logically fraught. Many would say that pain IS distress. It is also an urge to pull your hand off of the hot stove -- which seems to be the only function of pain. Indeed, it is not clear *why* pain should be distressing. (It is actually quite unclear why *any* kind of awareness or qualia should be fitness-enhancing for any organism; only the function is fitness-enhancing.)

    Anyway, though "pain" without distress is conceivable, there isnt any proof that it exists. As far as we know, degree of pain is *strictly* proportional to degree of distress. This is commonsense. Commonsense can be wrong, but here there is no possible way to demonstrate it is wrong. So if CFS subjects are "more distressed by pain than others" -- well, they cant be: they simply have more pain, or they dont. To propose otherwise is simply mystifying. Science, unlike the philosophy of someone like Heidegger, is not supposed to be built on paradox, it is not supposed to involve some bizarre philosophical concept that you can only understand on LSD. It is not something you can just barely grasp late at night after a warm rain stops. It is not a poem, it is not a mystery.

    So it seems Lloyd either wrote, a little inattentively, an odd expression -- or is naive about philosophy and the philosophy of science and the bounds of science.
     
  17. fresh_eyes

    fresh_eyes happy to be here

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    Exactly. "You're not in pain, you just feel like you're in pain." (*whoa, brain cramp*)

    I don't think it is just an infelicitous use of language by Lloyd. I think I'm finally starting to comprehend where Wessely et al may be coming from: CFS is a virus that causes brain damage that makes you feel like you're sick for years. But you're not, so you have to learn to ignore your feelings via CBT and GET. Am I getting it?
     
  18. Koan

    Koan Be the change.

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    You are getting it!

    The twist in the tale is that it is none of it as innocent as it seems even when it doesn't sound innocent any more.

    As you noted, fresheyes, Lloyd chooses his words and his message very carefully. It needn't be sound so long as it sounds sound - so to speak :p

    The agenda has remained consistent throughout: prevent the malingerers from accessing benefits or care or anything else expensive or which does not square with our shared disdain for these people who think they are sick. The rhetoric has had to accommodate the growing bulk of biological evidence but it moves only far enough to encompass their original assumptions: how do we square our thesis that they are malingering with the evidence? Carefully, very carefully.

    There ain't nothing infelicitous about it. :D
     
  19. fresh_eyes

    fresh_eyes happy to be here

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    Geez, it's like The Matrix! Thanks for that red pill, y'all! :D
     
  20. Koan

    Koan Be the change.

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    It's crazy, I know.

    We're expensive. If it turns out that we have something which can be treated pharmacologically we will become lucrative and everything will change.

    We also present a huge challenge to the egos of those who "treat" us because the only honest answer they can possibly offer us is: I don't know. Many people, as you know, can't tolerate how much distress they feel when they admit they don't know.

    I'm sorry you ended up with us. It's one crazy place! But, your timing may be excellent!
     

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