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Article explaining ME/CFS on The Conversation website

Discussion in 'General ME/CFS News' started by Adster, Jan 9, 2014.

  1. Adster

    Adster Senior Member

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    Esther12, Bob, RustyJ and 2 others like this.
  2. Valentijn

    Valentijn Activity Level: 3

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    Pretty good overall, but they repeatedly call it "chronic fatigue".
     
    Bob likes this.
  3. Sean

    Sean Senior Member

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    Thanks for that, Adster.

    If only it had been.
     
  4. shannah

    shannah Senior Member

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    Finally a picture portraying us more as someone I can relate to!
     
    rosie26 likes this.
  5. Adster

    Adster Senior Member

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  6. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Insight into the minds that control our futures. Intelligent, yet dispassionate. Mr Loblay doesn't seem to see any problem with perpetuating the term "cfs".

    I wonder how Rituximab fits his model, since he seems to have wiped immune issues from the board.
     
  7. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Loblay is right on a few points, but not all of them. He seems completely unaware of the major research breakthroughs in the last seven years. He still seems to think its about fatigue for example, that's always a warning sign. Once the leading researchers began to realize that fatigue was irrelevant, and energy production was the key issue, they mostly moved to favour ME over CFS. Further he seems unaware of the research showing inflammation, especially post-autopsy findings. How could an immunologist be unaware of that?

    The issues about selectivity and specificity mentioned are important though. We currently are up to about 95% (2 day CPET) but more work needs to be done, especially independent validation. Given independent validation is on the way I hope to see things change by the end of this year, and we might have our first diagnostic test. Of course the 2 day CPET research is not immune based, so its entirely conceivable than an immunologist could miss it.

    Further, I think most immunologists don't know a lot about chronic viral infection. High tissue viral load is quite common in us (Chia's work) , with almost zero serum viral presence and only low antibody production. However its again the case that this research needs independent validition. A similar story applies to Lerner's findings.

    PS What immunologists do know about is chronic viremic infections i.e. HIV, Hep C, HTLV etc.
     
    Last edited: Jan 11, 2014
  8. Firestormm

    Firestormm Guest

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    I thought his reply that began 'Where to begin?' raised some very good points especially with regard to the use of healthy controls in immune studies. I agree with him in that we really should be only looking at controls using patients with other excluded chronic illnesses where fatigue is a component.

    I am not sure if he is right or wrong in what he says by way of criticising the Aus. studies however as I am not familiar with that work.

    The comments are proving much more interesting than the article I think :)
     
  9. alex3619

    alex3619 Senior Member

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    What Loblay missed is context. Both MS and RA have similar immune issues, but its suspected the details are different, but the researchers are aware of this. Future studies may have these groups as controls. The potential immune biomarkers are not developed enough to really be considered diagnostic. However they remain biomarkers, though perhaps of no immediate use. Not all biomarkers are diagnostic. In time they may be found to be diagnostic, particularly in combination.

    For example the low molecular weight RNase L is found in CFS, RA and MS, but elevated elastase is only found in CFS. We may find that without an understanding of the underlying pathophysiology we may have to diagnose using a biomarker combination. It may also be the case, like with exercise in ME or immune markers in fibro, that we need to have a blood culture challenged to see a unique response. So far nobody has done much (if any) examination of blood cultures in ME to see if a unique response can be elicited.
     
    Valentijn likes this.
  10. user9876

    user9876 Senior Member

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    In someways I found his comments deeply worrying. He talks about distributions of blood tests but the way he does so hints at the ignorance and lack of system thinking within the medical community.

    He talks about variations between blood results depending on different times and as a result of chronic illness. I'm quite happy to believe there is a lot of variation. However, the lack of insight describing variations, causes and correlations between measures worries me. I'm assuming that underlying this there has been no attempt to characterise what is happening in the immune system and hence it will be next to impossible to understand if differences are significant and where they may be.

    The 5% of healthy people will have blood results outside of the normal range comment worried me. That is basically achieved by imposing a normal distribution over blood results when normal is defined. However, very little is really normal when looking at tails. On this argument there will be some small % of people who would have no blood because it is in the tail of the normal distribution. I think there is an important question as to whether there really are health people outside of such ranges.

    Looking at how the lack of decent characterisation of the immune system and how it relates to other things in the body it will be very hard if not impossible to demonstrate changes. The reliance on stats rather than a mechanistic understanding of the system makes this much worse.
     
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  11. Bob

    Bob

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    I find Mitchell Lawlor's comments rather depressing.
     
    Adster likes this.
  12. Adster

    Adster Senior Member

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  13. leela

    leela Slow But Hopeful

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    I know this is waaaaaay off topic, but I can't help wishing Robert Loblay would hire Bob Loblaw.

    *You Arrested development fans know what I'm talkin' about!
     
    Adster likes this.

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