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researcher receives $1.5 million NIH grant to evaluate daily activity patterns and heart rate...

Discussion in 'Latest ME/CFS Research' started by Kyla, Jun 24, 2016.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    http://www.newswise.com/articles/getting-to-the-heart-of-chronic-fatigue-syndrome

     
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  2. A.B.

    A.B. Senior Member

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    Sounds like the author is expecting to find life events and behaviour patterns that lead to relapses. Hopefully he is prepared to accurately report a null result.

    Remniscient of the "boom and bust" behaviour proposed by British psychiatrists, for which no evidence was found in a study using actimetry, but they still go on about it as if it were true.
     
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  3. PennyIA

    PennyIA Senior Member

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    hmmm... my issue with this is that he's the Associate Professor of Psychiatry... and a psychiatric nurse is reviewing things....

    So, while he states it's going to be looking at a biomarker... I'm skeptical.... I'm betting they'll come along and identify that the activities aren't enough to increase the heart rate and it's just anxiety that would ... and lo and behold, it won't be false illness beliefs it'll be anxiety and fear induced by false illness beliefs.
     
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  4. PennyIA

    PennyIA Senior Member

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    Oh... and see what he did there? He's looking for a biomarker so all of us asking them to fund testing looking at biomarkers are going to be happy (?) and the psychiatrists still get their funds.


    grrrrr
     
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  5. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    The researcher in question is Fred Friedberg, who as far as I know is an honest researcher / not part of the BPS crowd.
    I think this is a study on heart-rate based Pacing, which I personally think might be helpful. It is obviously not a cure, but using a heart-rate monitor to pace activities better has helped me, and there seem to be a lot of other patients doing so as well.
     
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  6. PennyIA

    PennyIA Senior Member

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    Pacing is good - it's what keeps me from crashing quite often - but I don't see it yielding a biomarker. That makes it seem like he's looking for something OTHER than how to improve coping mechanisms.
     
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  7. A.B.

    A.B. Senior Member

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    Thanks, that is reassuring.
     
    Mel9 likes this.
  8. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    While I like the fact that funds are awarded for ME research, there is a long list of other bio research that I would rather receive $1.5 million.
     
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  9. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Maybe someone with more knowledge of his research/history can weigh in.

    There is always a risk of spin with this sort of thing, but for me the fact that they are tying this to objective measures (not just questionairres) is a good thing.
     
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  10. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    I would rather it go to bio research as well, but if these sorts of studies are going to be done (which currently seems unavoidable) I would much rather they use objective measures, and at least attempt to research something new instead of endless CBT study rehashes ;)
     
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  11. PennyIA

    PennyIA Senior Member

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    Even better if they didn't just use activity journals and run through interviews with psychiatric nurses then either.

    Instead I'd rather have motion monitors and other blood work and tests that prove build up of lactic acid, etc.
     
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  12. Esther12

    Esther12

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    I often find bits I disagree with in Friedberg's work, but he's a long way from Wessely school researchers. He wrote a piece somewhat critical of how recovery was defined in PACE, and I think he was the first academic researcher to do so. He seems on patient's side, and I think he's involved in one of the US charities (I'm sure others know much more about him, I never remeber much about the people I don't have a problem with).

    I don't know the details of this, but looking at how subjective and objective outcomes sounds like it could be useful?
     
    Last edited: Jun 24, 2016
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  13. Comet

    Comet I'm Not Imaginary

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    Four years?
     
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  14. Snow Leopard

    Snow Leopard Hibernating

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    There is actually a need for such a study - naturalistic (eg not involved with intervention studies) data on heart rates, activity levels over time is quite lacking. I personally don't think anything to do with recovery/remission will be found, but that's not the point.
     
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  15. Justin30

    Justin30 Senior Member

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    Activity minitor....I hope they dont use the fitbit as its flaw to accurately capture fast spikes in heart rate. Missing spikes of up to 20 BPM.

    Further what if you have POTS and are on many different meds to control heart rate. This could be another problem.

    Further i did not see but was selection cruteria ever listed?
     
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  16. PennyIA

    PennyIA Senior Member

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    While the study won't be useless, I think at best case it *might* prove a point that as patients we've been trying to make... activity outside our 'envelope' can cause PEM. But that's a very big *might* and it's assuming the selected patients were willing to exceed thresholds and incur PEM (I personally, would have a hard time convincing myself to intentionally induce PEM).

    And, sadly, even at best case - it would only potentially create better coping mechanisms.

    Now that there are SO MANY exciting studies and possible biomarkers for the illness that are begging to be funded? I'd just rather the funds were going there FIRST and this SECONDARILY... and having good biomarkers would help this study get more accurate results if it used those biomarkers for selection criteria.

    ETA: Admittedly, part of my concern is that this seems like a big chunk of the OLD budget for ME/CFS; if the NIH were to actually fund this disease with a budget that was 100 times what it used to? and they seem to have been discussing increasing budget... well, then I'd just be cheering for it instead...

    When you only get 5 slices ($5M) of budget and one whole slice ($1.5M is more than a slice) is going to go to something like this? It means there's that much less money available for other researchers. If on the other hand we had 500 slices ($500M)? well, ok, one slice ($1 - $1.5M) to help study management of the illness would be a-ok.
     
    Last edited: Jun 24, 2016
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  17. panckage

    panckage Senior Member

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    In this forum many people have talked about life events (causing an increase in exertion/stress) leading to crashes. I don't quite understand the cynicism. If we overdo it we crash. Maybe this study can support the use of heart rate monitors to avoid crashing with a correlational study

    Personally I am interested in the result with interest to chronotropic incompetence which I have heard is common for this illness but I don't recall reading any research papers specific to this yet
     
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  18. duncan

    duncan Senior Member

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    "The participants will then be interviewed by a psychiatric nurse via the phone about other potentially important illness factors including major life events they have experienced over the study period, their physical and social functioning, and changes in their illness status..."

    This sends up red flags. Why a psychiatric nurse? Why major life events - and why does he include major life events as potentially important illness factors? Why did he earlier refer to patient reports as "self-reporting"? (This is disturbingly common in insurance-speak.)

    This sounds like psych happy-hour to me.
     
  19. Bob

    Bob

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    Fred Frieberg is president of the IACFS/ME. I'm not keen on this research because I can think of a million other areas of research where money could be better spent, but at least it's not going to corrupt researchers.
     
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  20. duncan

    duncan Senior Member

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    A REALLY REALLY famous Lyme psych - supposedly a huge chronic Lyme advocate - gave a speech on Lyme and Psychosomaticism.

    I was just as critical with him.

    This stuff is not being done in a vacuum. If they are our advocates, they should know this.
     
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