Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Timed loaded standing in female chronic fatigue syndrome compared with other populations

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jul 6, 2015.

  1. Dolphin

    Dolphin Senior Member

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    Free full text: http://www.rehab.research.va.gov/jour/2015/521/pdf/jrrd-2014-03-0086.pdf

     
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  2. Dolphin

    Dolphin Senior Member

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    Here's the test. One holds 1 kg in each hand.
    Eyskens 2015 Figure 1.png
     
  3. Dolphin

    Dolphin Senior Member

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    The end of this sentence from the abstract is not clear:

    What it is referring to is the fact that the CFS group had an average age of 43 and the osteoporotic group had and average age of 69 (the difference also held up when adjusting for the factors)

    Here's a sentence from the full text:
     
  4. Effi

    Effi Senior Member

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    I'd say beware of this crew. They're BPS undercover. They invented a glorified version of GET but it's basically still GET. They try to force their point of view upon public opinion by referencing pretty much only their own studies, in order to gain power over the CFS field in this country. Any treatment that isn't their treatment is considered bad and 'unethical'. Who knows what they're trying to achieve with this study?

    PS: Nijs used to work with KDM (so used to be convinced of the biomedical viewpoint), but somewhere somehow he crossed over to the other side...
     
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  5. Snow Leopard

    Snow Leopard Hibernating

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    The overall aim of this study is reasonable - developing a cheap/easy method of measuring impairment which they hope can be improved with interventions. That validity still remains to be proven (compared to overall levels of disability, impairment including other objective measures - repeated exercise testing, actigraphy, step tests, 6 min walking distance tests etc.) as well as longitudinal stability.

    They might thing that some of the weakness is due to deconditioning, cognitive factors, etc but surely if such measures do not improve (at long term followups), they will start to revise their reasoning?
     
    Simon likes this.
  6. Dolphin

    Dolphin Senior Member

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    Not sure whether you saw but they did mention this, though not done on an ME/CFS group:
     
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  7. Effi

    Effi Senior Member

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    It's these interventions that I'm worried about. I suspect they make up their studies specifically to market their own strategies, i.e. glorified GET.
    The thing they do is: if you say you're feeling better, you're a 'good patient' and are encouraged. If you say you feel worse, you're not doing it right and you're a 'bad patient' and are probably put in a database titled 'to be ignored'. (I was a patient of a doctor who used to be in this crew and I saw her spinning my results right in front of me, just so that I'd fit in with her theory. I was getting worse and worse and she kept telling me I was getting better, although the numbers said I was getting worse.) It doesn't look like they'll change their strategy any time soon. Problem is, it looks SO good on paper. But in reality it's just the same patronizing abuse we all know too well.

    Now that I think of it, I can imagine what this study is for... This crew is trying to re-open the 'CFS reference centres' here in Belgium. They were closed after an objective study stated that over 70% of patients got worse because of their GET/CBT practices. So I guess they regrouped, polished their theory, coated it with some shiny varnish. A couple of months ago they sent out a 'heartfelt' letter to the government to say that CFS patients need more and better treatment. I wouldn't be surprised if this study is just part of them making their case. This study states that CFS patients are very sick indeed, so we desperately need treatment. And they will give it to us gladly. Cha-ching. :moneybag:
     
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  8. alex3619

    alex3619 Senior Member

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    This study needs independent validation, including using strict patient cohorts. If its useful then that's a good thing, regardless of the therapy they want to push. I would like to see something like this looked at in strict CCC or Ramsay ME patients outside of Europe.
     
  9. Effi

    Effi Senior Member

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    I totally agree, but isn't that gonna be a problem until we have a biomarker? As long as they work with 'questionaires' or 'diagnostic criteria' they can mold their cohorts as they please. It would be interesting to see this study repeated by researchers without a specific agenda.
     
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  10. Asa

    Asa Senior Member

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    Does anyone have a source for the above, please? I've seen this info elsewhere but can't recall where just now. (Thank you!)
     
  11. Dolphin

    Dolphin Senior Member

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  12. jimells

    jimells Senior Member

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    This is garbage sprinkled with perfume. It neither informs diagnosis nor treatment of our illness. I had a friend who died from pancreatic cancer. He most certainly would've done very poorly on this test.

    Perhaps his cancer doctors should've prescribed "rehabilitation" after he became too weak to stand. :mad:
     
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  13. jimells

    jimells Senior Member

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    Thanks for giving us the background to this research. One can pretty well guess this story just from the abstract.
     
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  14. Effi

    Effi Senior Member

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    same old, same old... That's the one thing we gotta admit about the BPS crew: their bullshit is pretty consistent.
     
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