Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

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

    Messages:
    229
    Likes:
    314
    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

    Messages:
    12,030
    Likes:
    13,086
    Sth Australia
    US only... (thought for a moment I may of been able to earn some money)
     
    Snow Leopard, MeSci and Theodore like this.
  3. Horizon

    Horizon Senior Member

    Messages:
    229
    Likes:
    314
    Shame that it's U.S. only
     
    MeSci likes this.
  4. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    Messages:
    2,252
    Likes:
    5,590
    USA
    https://projectreporter.nih.gov/project_info_description.cfm?aid=9104592&icde=31673366
    Title: ME/CFS: ACTIVITY PATTERNS AND AUTONOMIC DYSFUNCTION
     
    MeSci, Hutan and Valentijn like this.
  5. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    Messages:
    2,252
    Likes:
    5,590
    USA
  6. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,928
    Likes:
    10,177
    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.
     
    TiredSam, Effi, ukxmrv and 2 others like this.
  7. Groggy Doggy

    Groggy Doggy Guest

    Messages:
    1,129
    Likes:
    4,142
    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
    Snowdrop, TiredSam and trishrhymes like this.
  8. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,558
    Europe
    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

    Messages:
    4,779
    Likes:
    5,884

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

    trishrhymes Senior Member

    Messages:
    2,154
    Likes:
    17,895

    Or noticed that the sicker you are the less you can do....
     
    Little Bluestem and Snowdrop like this.
  11. Dolphin

    Dolphin Senior Member

    Messages:
    10,737
    Likes:
    28,348
    via https://cfsme-registry.info

     

See more popular forum discussions.

Share This Page