Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Daily Activity Patterns and HR variability study (can be done from home)

Discussion in 'Active Clinical Studies' started by Horizon, Nov 16, 2016.

  1. Horizon

    Horizon Senior Member

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    Attention ME/CFS Patients! Volunteers needed for an ME/CFS research study of Daily Activity Patterns and Heart Rate Variability. Up to $625 in compensation for full participation. Learn more at: http://bit.ly/2f6nT7R
     
  2. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    US only... (thought for a moment I may of been able to earn some money)
     
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  3. Horizon

    Horizon Senior Member

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    Shame that it's U.S. only
     
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  4. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    https://projectreporter.nih.gov/project_info_description.cfm?aid=9104592&icde=31673366
    Title: ME/CFS: ACTIVITY PATTERNS AND AUTONOMIC DYSFUNCTION
     
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  5. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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  6. Snowdrop

    Snowdrop Rebel without a biscuit

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    Brought to you by Fred Friedberg.

    Interestingly (and I don't think I'm alone) positive life events cause me to crash as much as anything negative --- it's all energy expended. You would think FF would know better by now.

    I wouldn't recommend participation. I think this type of setup to collect information is bound to provide the data they're looking for to come to (poorly)preconceived conclusions.

    The thing about this type of research also is that you never really have to deal with the sick person--not in a way that offers any real insight (should they stop to look) into daily functioning. Self reporting is (once given to the researcher to view) all abstract and sanitised for consumption. And the results can be interpreted as wrong thinking rather than actual disability although I suppose that there have been health professionals who've looked after PwME and managed the same deranged thinking (I'd like to think that's it's harder to do).

    I'm not comfortable that this will have any positive impact for people with ME. We need so much more.

    ETA All these people keep focussing on lifestyle improvements. For some of us sadly there is little that can be done in this regard. Maybe the mildly affected have a different perspective.
    But I'm tired of seeing this type of research.
     
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  7. Groggy Doggy

    Groggy Doggy Senior Member

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    No thanks, this is an example of wasting tax payer dollars. Fred ought to do something useful for us, for a change, like give the $1.5M he took from the NIH and give it to Ron Davis (where it will get the best bang for the buck). I think the ME patients, in the US, should get a vote on which NIH studies are funded for the illness we suffer from. We don't need more government bureaucracy.
     
    Last edited: Nov 17, 2016
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  8. Effi

    Effi Senior Member

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    Absolutely! You'd think it's basic knowledge, but apparently it isn't. I have a very bad feeling about this study.
     
  9. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    I take it he has not heard of Aggressive Rest Therapy. :rolleyes:
     
  10. trishrhymes

    trishrhymes Senior Member

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    Or noticed that the sicker you are the less you can do....
     
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