Approaching recovery from myalgic encephalomyelitis and chronic fatigue syndrome (2017) Devondorf, Jason et al

Sasha

Sasha

Senior Member (Voting Rights)
JHP said:
Abstract
There are unique methodological challenges to studying and assessing recovery in myalgic encephalomyelitis and chronic fatigue syndrome.

This study explored these challenges through interviewing 13 physicians who treat myalgic encephalomyelitis and chronic fatigue syndrome.

Our deductive thematic analysis produced four themes to consider when approaching recovery: lifespan differences in the illness experience; the heterogeneity of myalgic encephalomyelitis and chronic fatigue syndrome—case definitions, etiological stance, and misdiagnosis; patient follow-up and selection bias; and assessment logistics.

We discuss how researchers and clinicians can use these considerations when working with patients, drafting recovery criteria, and interpreting treatment outcomes.
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http://journals.sagepub.com/doi/abs/10.1177/1359105317742195?journalCode=hpqa#articleShareContainer
 
Full text is at https://sci-hub.bz/https://doi.org/10.1177/1359105317742195

It takes a nice swing at PACE's assessment of recovery:
Originally, White et al. (2013) purported that 22 percent of patients with CFS recovered after CBT and 22 percent recovered after GET. However, patients, researchers, and physicians have voiced their criticisms over the PACE trial (Geraghty, 2016; Nacul et al., 2017).

One core methodological concern was the purportedly loose recovery criteria used by PACE (White et al., 2013). As Geraghty (2016) mentions, some trial participants could have fulfilled criteria for recovery before entering the trial. Under the more stringent recovery criteria from the original protocol, a reanalysis of patient outcomes found recovery rates of just 7 and 4 percent, respectively, for CBT and GET (Wilshire et al., 2017). These disparate results highlighted a challenge to studying recovery—there is no consensus for defining and measuring recovery from ME and CFS (Adamowicz et al., 2014).
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Some of the expects interviewed don't sound very useful, such as seeing patients only once typically. That's how BPS fatigue clinics operate, not real specialists:
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This explains some of the stupid statements, and I think this paper would have been more meaningful if they'd screened out the "expert" idiots who must essentially believe that ME/CFS is psychosomatic, and/or have no idea what the actual ME/CFS symptoms are:
Etiological views also varied among this sample. Most believed ME and CFS were physiologically based (Participant 7 believed in ME but not CFS); two believed ME and CFS were temporary diagnoses; and two physicians (both psychiatrists) believed they were psychiatric illnesses that were depression variants.
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The authors of the paper seem to agree, since they recommend rectifying the problem by educating the doctors who are talking out of their asses:
This challenge highlights two needs for researchers and practitioners. The first is echoed in the literature—there needs to be a consensus on clinical and research case definitions.

The second need is to understand the relationships of ME and CFS to depression to avoid skewing recovery rates.
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As to the central question of defining recovery:
While effective coping is encouraged, physicians conceptualized recovery as the complete remission of ME and CFS symptoms, without the need to cope or adjust one’s daily life. Physicians recommended screening for coping strategies, while being patient, observant, and confidant to discern between symptom management and true improvement. Objective measures could also, to some extent, control for coping. Physicians mentioned the use of neuropsychological testing, actigraphy, and heart rate monitors.
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They mention that assessment is primarily via questionnaires like the SF36, and recommend including something more descriptive where the patient basically assesses their own illness and symptoms:
These instruments have participants report how their health status affects items such as “climbing several flights of stairs,” “bending kneeling, or stooping,” and “bathing and dressing.” While these items are efficient methods to capture aspects of daily life, we recommend that researchers also include open-ended self-reports to supplement these standardized measures. Open-ended questions would allow participants to detail their experiences. Although these supplements would be subjective and time-consuming to code, previous work has shown that physicians and patients, alike, feel recovery should be appraised by the patient (Devendorf et al., 2017, undergoing revisions).
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It sounds like some of the "experts" featured in this study could benefit from being told about PEM, and that it's a mandatory symptom :rolleyes: Hopefully they'll read the paper and learn something:
A useful discriminator for differentiating depression and ME and CFS is how patients react to exercise. Patients with ME and CFS experience post-exertional malaise following exercise (Fukuda et al., 1994), whereas patients with depression experience gains in their mood (Dimeo et al., 2001).
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I didn't know that the BDI-PC was a thing, but it sounds like a vast improvement for use in sick patients:
Researchers and practitioners could also use the Beck Depression Inventory for Primary CARE (BDI-PC; Beck et al., 1997) to screen for depression among patients with ME and CFS. Compared to the BDI-II (Beck et al., 1996), the BDI-PC is more likely to better measure depressive symptoms in ME and CFS populations due to its omission of overlapping somatic symptoms (Brown et al., 2012b).
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Too bad we don't get to know who the experts were :-P
 
@Esther12, I did see a paper recently that concluded that a sound definition of recovery, according to clinicians, was the regaining of pre-illness health and function - duh! - but I'm not sure that it's this paper. I'd thought that that statement had been in the paper's abstract.
 
Valentijn said:
This explains some of the stupid statements, and I think this paper would have been more meaningful if they'd screened out the "expert" idiots who must essentially believe that ME/CFS is psychosomatic, and/or have no idea what the actual ME/CFS symptoms are:
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I think it's good to try to see a range, rather than screen people on the basis of their views, then write a paper about their views. I'm deeply suspicious of all qualitative work like this tbh, but it's probably most useful when the researchers involved do as little as possible to manage the outcome of their work.

For people interested, this is what they say on selecting the 'experts'.

We recruited a non-probabilistic, purposive sample of 10 physicians who specialize in ME and CFS (Guest et al., 2006) and assessed for saturation. Our sample size was informed by Guest et al. (2006), who recommend that interview structure (e.g. open versus structured), research aims, and homogeneity influence sample decisions. Previous ME and CFS qualitative studies have utilized similar sample sizes (e.g. Åsbring and Närvänen, 2003, N = 12 CFS physicians). Specialists were defined by their extensive patient experience, research contributions, and significant involvement in the field (e.g. running ME and CFS specialty clinics, participating on committees). L.A.J., an ME and CFS expert, provided recommendations for contacting 17 physician specialists. In all, 10 of these specialists responded and participated. Due to a lack of medical specialists in the field, we asked our participants for referrals to other physicians who had experience treating patients with ME and CFS. This led our team to interview three other physicians who did not identify as ME or CFS specialists. One physician was a pediatrician; two were psychiatrists. While coding for “What are the challenges associated with studying recovery from ME and CFS?” we felt that these non-specialists extended on the coded data from the specialists, which provided us a richer analysis of these nuanced challenges. We assessed our results for saturation throughout the data collection process. We determined that we reached saturation when there was enough information to replicate the study and that no new themes emerged with more interviews (Fusch and Ness, 2015). DePaul University’s Institutional Review Board provided ethics approval to conduct this research.
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Esther12 said:
I think it's good to try to see a range, rather than screen people on the basis of their views, then write a paper about their views.
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Well, it's supposed to be about expert definitions and opinions of problems. If they don't know what the symptoms of ME are or think it's a manifestation of depression, they probably aren't aware of any of the research or other evidence, and they certainly aren't experts :-P Hence the usefulness of their input on the topic is rather negligible.

While it is useful to know what random doctors think, and how highly they self-rate their knowledge in an area, that should be a different project. The only thing they contributed to the present paper is to illustrate that one group of delusional "experts" needs to be educated by the actual experts, and that they should probably be kept away from patients until they learn how to read about the disease they're treating.
 
"The average age of the PACE ME/CFS subjects was in the late 40s to 50..."

Out by a decade. It was 38 at the start of the 12 month trial, and hence 39 at the end.

Which makes the comparison with the overall population instead of the age matched population even more absurd and unreliable.
 
Our interviews asked physicians about their general thoughts on recovery from ME and CFS—defining, measuring, and studying recovery. These questions were inspired by online, patient discussion boards discussing the PACE trial, and they were generated based on discussions with an expert in the field (L.A.J.).
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Concurrently, we acknowledge that ME and CFS may be comorbid with depression. One review reported a 50–75 percent lifetime history of major depressive disorder in patients with ME and CFS (Afari and Buchwald, 2003). Often, the experience of ME and CFS may lead to depression due to losses in functioning (Jiménez Ortiz, 2015), a common experience among individuals with chronic illnesses (Smith, 2015). In these cases, it is important to differentiate functional gains in depression from functional gains in ME and CFS.
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A problem if use a fatigue scale, for example.
 
I think a person can also feel very fatigued without any significant loss of physical function.

Edit: By this I mean people who do not have ME, can potentially be misdiagnosed as having it if care not taken.
 
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