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

mango

Senior Member
Messages
905
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)
 

Jonathan Edwards

"Gibberish"
Messages
5,256
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.
 

adreno

PR activist
Messages
4,841
Middle East Journal of Rehabilitation and Health.

Some obscure Iranian journal was the only one who would publish this? Oh, the impact factor!
 
Messages
15,786
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.
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.
 

barbc56

Senior Member
Messages
3,657
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?
 

barbc56

Senior Member
Messages
3,657
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?

To their credit the authors do say this was a case presentation, so what you say does make sense.

I've tracked activity and symptoms in the past, and found an actometer to be far easier and less troublesome to use

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
 

Kati

Patient in training
Messages
5,497
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.
 

Sean

Senior Member
Messages
7,378
It means that patients can now receive group therapy and lifestyle counselling and it is much cheaper than biomedical research for serious biomarkers.
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.'
 

Kati

Patient in training
Messages
5,497
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.'

And 'eat more vegetables' (nightshades of course)
 

Sean

Senior Member
Messages
7,378
'You also have not followed our advice on sleep hygeine, and not kept the detailed diaries we require.'

:rolleyes:
 

JohnCB

Immoderate
Messages
351
Location
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