Devendorf et al. 2017 Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: the physician perspective

Dolphin

Dolphin

Senior Member (Voting Rights)


http://www.tandfonline.com/doi/abs/10.1080/09638288.2017.1383518

Original Article
Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: the physician perspective
Andrew R. Devendorf ,Carly T. Jackson,Madison Sunnquist &Leonard A. Jason
Pages 1-8 | Received 06 May 2017, Accepted 19 Sep 2017, Published online: 05 Oct 2017


Abstract
Purpose: To inform an operationalised definition of recovery from myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) for research and practice. Without a consensus on defining and measuring recovery, there will continue to be controversy amongst researchers, clinicians, and patients when interpreting treatment outcomes.

Method: This study explores physicians’ views on recovery from ME and CFS. We conducted semi-structured interviews with 10 physician participants who are experts in the ME and CFS field. Our deductive thematic analysis, using a realist perspective, provided a framework for differentiating recovery and significant improvement.

Results: Physicians conceptualised recovery as complete symptom remission and a return to premorbid functioning (adjusted for with age), whereas they viewed significant improvement as a substantial reduction in symptoms with considerable functional gains, where patients may operate in daily life but still must cope or be treated.

Conclusions: Our findings provide recommendations and approaches for measuring: daily functioning, symptomatology, quality of life, and physical functioning.

  • Implications for rehabilitation
  • Physicians viewed recovery as complete symptom remission and a return to premorbid functioning (adjusted for with age).

  • Recovery from myalgic encephalomyelitis and chronic fatigue syndrome should be viewed as multidimensional, considering patients’ daily life, psychosocial functioning, and overall physical functioning.

  • These findings can improve practitioner-client interactions, as they provide recommendations for measuring recovery in research and practice.


Chronic illness, assessment, prognosis, physical functioning, psychosocial functioning, qualitative
 
From the blog:

Although perhaps at first sight being a rather simple question to answer - Q: What does recovery look like in relation to ME/CFS? A: Complete remission of symptoms - there's a lot more behind such a query than you might expect. I'm particularly thinking about how 'recovery' has been a real source of discussion/debate/argument (delete as appropriate) in the context of ME/CFS in recent 'PACE' times (see here and see here).

Ten experts on ME/CFS were quizzed about their views specifically on recovery from the condition(s). As probably expected: "Physicians conceptualised recovery as complete symptom remission and a return to premorbid functioning (adjusted for with age)." No surprises there then. Insofar as the term 'significant improvement', experts also quite sensibly reported that this should be 'operationalised' as "a substantial reduction in symptoms with considerable functional gains, where patients may operate in daily life but still must cope or be treated." Again, not really that earth-shattering to be honest.
Click to expand...

That Jason paper is saying such obvious things, and so clearly in response to PACE, that it's pretty funny. It's almost a form of trolling... but then, academia seems so rubbish that people do need a peer reviewed paper to refer to in order to recognise the PACE recovery criteria is BS.

At the Jason paper page, the top 'People also read' is:

Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial
Carolyn Wilshire et al.
 
The twitter posts that Dolphin kindly provided are:
1.
Code: 
https://twitter.com/PaulWhiteleyPhD/status/927445321176797184

Paul Whiteley PhD
New post: What does 'recovery from myalgic encephalomyelitis / chronic fatigue syndrome' look like?
Click to expand...


2.
Code: 
https://twitter.com/TomKindlon/status/928083236626092032

Tom Kindlon
Commentary on: "Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: the physician perspective" by @CenterRes
Click to expand...
 
Luther Blissett said:
The twitter posts that Dolphin kindly provided are:
1.
Code: 
https://twitter.com/PaulWhiteleyPhD/status/927445321176797184




2.
Code: 
https://twitter.com/TomKindlon/status/928083236626092032
Click to expand...
Can some people not see tweets if the URL is posted in like above?
 
Dolphin said:
Can some people not see tweets if the URL is posted in like above?
Click to expand...

It depends on if they have images turned off, and maybe some kind of Javascript blocking.

It will be a minority, but I don't mind adding the link for accessibility reasons :)

It might help us with search engine visibility if the words are on the page here, too.

I've had a couple of requests to put twitter links up, the problem is that for most the embedded image is useful to them.

Feel free to add to your post if wanted.
 
It sounds like this could be useful ammunition against PACE and other trials/treatments that don't measure things like full return to work and social activity, and objective things like step count.

I can't access the full paper. I wonder whether it goes into things like what scores on SF-36, Chalder scale etc. would be considered 'recovered' and 'significant improvement'.

I fear that unless both questionnaire results and quantifiable objective measures are standardised, psych researchers will go on claiming recovery by brainwashing patients to redefine it (as seems to be happening with LP and the weird NLP based stuff Dorset and Oxford ME services are doing.)
 
I assume this means that it has been physically printed now?
This article was just published by the DePaul group:

Devendorf, A.R., Jackson, C.T., Sunnquist, M., & Jason, L.A. (2019). Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: The physician perspective. Disability and Rehabilitation, 41, 158-165. doi: 10.1080/09638288.2017.1383518

ABSTRACT
Purpose: To inform an operationalised definition of recovery from myalgic encephalomyelitis (ME) and
chronic fatigue syndrome (CFS) for research and practice. Without a consensus on defining and measuring
recovery, there will continue to be controversy amongst researchers, clinicians, and patients when interpreting
treatment outcomes.
Method: This study explores physicians’ views on recovery from ME and CFS. We conducted semi-structured
interviews with 10 physician participants who are experts in the ME and CFS field. Our deductive thematic
analysis, using a realist perspective, provided a framework for differentiating recovery and significant
improvement.
Results: Physicians conceptualised recovery as complete symptom remission and a return to premorbid
functioning (adjusted for with age), whereas they viewed significant improvement as a substantial reduction
in symptoms with considerable functional gains, where patients may operate in daily life but still
must cope or be treated.
Conclusions: Our findings provide recommendations and approaches for measuring: daily functioning,
symptomatology, quality of life, and physical functioning.
Click to expand...
Code: 
https://www.facebook.com/leonard.jason.12/posts/10215528695063498
 
Esther12 said:
That Jason paper is saying such obvious things, and so clearly in response to PACE, that it's pretty funny. It's almost a form of trolling... but then, academia seems so rubbish that people do need a peer reviewed paper to refer to in order to recognise the PACE recovery criteria is BS.
Click to expand...
Trish said:
It sounds like this could be useful ammunition against PACE and other trials/treatments that don't measure things like full return to work and social activity, and objective things like step count.
Click to expand...
Yep. Incredibly obvious things that you could not imagine need saying ... seem to need saying.
 
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