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.

Jason et al: The Use of Operant Methods to Evaluate Interventions for PWME

Discussion in 'Latest ME/CFS Research' started by mango, Apr 23, 2016.

  1. mango

    mango Senior Member

    Messages:
    895
    Likes:
    4,858
    The Use of Operant Methods to Evaluate Interventions for Patients With Myalgic Encephalomyelitis

    Leonard A Jason 1, * ; Elizabeth K Kidd 1 ; Abigail A Brown 1 ; and Stephanie McManimen 1

    1 DePaul University, Rachael Korinek and Joey Tuan, Center for Community Research, Chicago, USA
    *Corresponding author: Leonard A Jason, DePaul University, Rachael Korinek and Joey Tuan, Center for Community Research, Chicago, USA.

    Middle East Journal of Rehabilitation and Health. inpress(inpress): e37972 , DOI: 10.17795/mejrh-37972

    Article Type: Case Report;
    Received: Mar 20, 2016; Accepted: Apr 5, 2016; epub: Apr 27, 2016;

    Abstract
    Introduction
    : The current study provides data from two patients with myalgic encephalomyelitis, who charted several of their symptoms over time.

    Case Presentation: Each patient charted domains that were relevant to them, and they were attempting to assess the effects of specific interventions. An AB operant design was used for both participants. The findings indicate that by charting symptoms on a regular basis, it is possible to determine if a particular intervention is helpful and effective.

    Conclusions: This methodology is easily available to patients and clinicians so that they can have a clearer idea of the effectiveness of interventions for managing some symptoms of ME.

    Keywords: Operant Designs; Symptom Management; Mold; Mylagic Encephalomyelitis; Chronic Fatigue Syndrome

    http://jrehabilhealth.com/25314.abstract?page=article&article_id=37972

    Open access (.pdf, 4 pages)
     
    Tyto alba, Dolphin, Woolie and 4 others like this.
  2. Jonathan Edwards

    Jonathan Edwards Senior Member

    Messages:
    5,019
    Likes:
    29,078
    I am quite surprised to see this. It seems like a recommendation to do very poor research and an attempt to justify its validity. It also seems to be an encouragement to pseudoscientific practitioners to claim that what they sell works. This seems to me to be absolutely not what PWME need from scientific research.

    The idea of using a time course with ABAB phases is perfectly reasonable - Fluge and Mella have of course used that for rituximab - but the results do not actually show an ABAB protocol! Moreover, unless the trial is blinded to 'true test phase' or has outcomes that are not mood dependent (like CRP etc) it is no use as a primary test of efficacy.

    I am disappointed.
     
    Tyto alba, Woolie, barbc56 and 4 others like this.
  3. adreno

    adreno PR activist

    Messages:
    4,706
    Likes:
    9,776
    Middle East Journal of Rehabilitation and Health.

    Some obscure Iranian journal was the only one who would publish this? Oh, the impact factor!
     
    *GG* and BurnA like this.
  4. Valentijn

    Valentijn The Diabolic Logic

    Messages:
    14,035
    Likes:
    43,425
    Well, it's an improvement over fatigue questionnaires. But other than that, it seems like a pretty limp article with no clear purpose, and a flimsy basis.

    I've tracked activity and symptoms in the past, and found an actometer to be far easier and less troublesome to use.
     
    Webdog, Tyto alba, Dolphin and 3 others like this.
  5. barbc56

    barbc56 Senior Member

    Messages:
    3,526
    Likes:
    4,120
    I'm really surprised that this "study" came from DePaul University which has a very good reputation at least for FM research. My rheumatologist when I lived in Chicago did research there. I thought it was the same for research on me/cfs but maybe I am misremembering.

    Two participants? This seems more under the heading of anecdotal reports.

    Charting symptoms and treatments can be helpful but with obvious limitations. Someone was actually paid to do this! Geese!

    It's meaningless.

    Ah, I just saw the abstract and didn't realize the actual study was underneath. I'm not sure it will change my opinion but who knows?
     
  6. Jonathan Edwards

    Jonathan Edwards Senior Member

    Messages:
    5,019
    Likes:
    29,078
    Maybe even reported anecdotes?
     
    Valentijn and barbc56 like this.
  7. barbc56

    barbc56 Senior Member

    Messages:
    3,526
    Likes:
    4,120
    I think you just invented a new phrase that could be applied to some types of research. Good one!
     
  8. Bob

    Bob

    Messages:
    9,846
    Likes:
    33,923
    England (south coast)
    Jason often puts out exploratory or discussion papers, as well as his heavy duty investigators. Maybe his university like to see lots of papers getting published?
     
    Dolphin, Valentijn and barbc56 like this.
  9. barbc56

    barbc56 Senior Member

    Messages:
    3,526
    Likes:
    4,120
    To their credit the authors do say this was a case presentation, so what you say does make sense.

    That's a good point. The closer you get to something more tangible like counting calories you would think the more helpful. I think self tracking has it's place but as I said above it has its limitations.

    I once tracked my sleep pattern, when I went to bed, got up but it was so depressing, I stopped. My personal research in real time, real results and a real downer. :D
     
    BurnA likes this.
  10. Woolie

    Woolie Senior Member

    Messages:
    1,749
    Likes:
    13,011
    Dolphin and Sean like this.
  11. Kati

    Kati Patient in training

    Messages:
    5,424
    Likes:
    19,311
    What kills me a bit is that the message seems to be that a change in diet will make us better and that maniacal tracking of all behaviors, body function, and functional score will make us better.

    We are still 30 years later, without a single FDA approved treatment or biomarker. Cutting the cantaloupes off my diet is not going to cut it.

    Self-management successes while it can give hope to some and give a sense of control, still remains that the larger majority of us get sick with a disease and remain sick for the rest of our lives.

    Placebo effect anyone? Believing you are a little better because of your new routine? BPS lobby, insurance companies, government agencies love to hear that kind of stuff. It means that patients can now receive group therapy and lifestyle counselling and it is much cheaper than biomedical research for serious biomarkers.

    Pardon my ranting.
     
    Joh, Webdog, Dolphin and 5 others like this.
  12. Sean

    Sean Senior Member

    Messages:
    3,146
    Likes:
    16,936
    And patients can be blamed when it doesn't work out.

    'You are just not trying hard enough. We need to work on your negative attitude problem, which is clearly the main barrier to your recovery.'
     
    Webdog, Dolphin, Woolie and 3 others like this.
  13. Kati

    Kati Patient in training

    Messages:
    5,424
    Likes:
    19,311
    And 'eat more vegetables' (nightshades of course)
     
    Webdog likes this.
  14. Sean

    Sean Senior Member

    Messages:
    3,146
    Likes:
    16,936
    'You also have not followed our advice on sleep hygeine, and not kept the detailed diaries we require.'

    :rolleyes:
     
    Kati likes this.
  15. JohnCB

    JohnCB MEow

    Messages:
    300
    Likes:
    1,885
    England
    It looks like a student exercise -

    Footnote
    Authors’ Contribution: Leonard A Jason was in charge of
    the overall writing and supervision of the study. Elizabeth
    K Kidd was involved in collecting and analyzing the data.
    Abigail A Brown and Stephanie McManimen supervisedMS
    Kidd in the data collection and making of figures. Rachael
    Korinek and Joey Tuan provided access to that data set and
    website, and helped in the writing and editing of the paper
     
    Webdog, Woolie, Bob and 1 other person like this.
  16. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    Messages:
    1,938
    Likes:
    4,842
    USA
    Nor stopped making the rounds of the bars in the evening :wine::beer::car:
     
    Sean likes this.
  17. Dolphin

    Dolphin Senior Member

    Messages:
    10,533
    Likes:
    27,372
     
    mango, Woolie, Solstice and 5 others like this.

See more popular forum discussions.

Share This Page