PEM is associated with greater symptom burden and psychological distress in patients ... with CFS (2019) May, Fletcher, Klimas et al.

Hoopoe

Hoopoe

Senior Member (Voting Rights)
Highlights
• Patients high in PEM endorse greater symptom burden than those low in PEM.
• Patients high in PEM endorse greater psychological adversity than those low in PEM.
• Results suggest the Fukuda case definition does not define a heterogeneous group.
• PEM may identify patients who would most benefit from psychological intervention.
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https://www.sciencedirect.com/science/article/abs/pii/S0022399919304672
 
Objective
Post-exertional malaise (PEM) is often considered a cardinal symptom of Chronic Fatigue Syndrome (CFS). There is no gold standard diagnostic method for CFS, however, and the Centers for Disease Control (CDC) Fukuda case definition does not require PEM. Research has identified differences in symptom burden between patients according to PEM, but whether it is associated with psychological distress has not been investigated.

Methods
The CDC CFS Inventory, Fatigue Symptom Inventory, Profile of Mood States, Center for Epidemiologic Studies Depression Scale, Perceived Stress Scale, and subscales of the Sickness Impact Profile were administered to 261 patients diagnosed with the Fukuda criteria. PEM status (loPEM/hiPEM) was determined via self-reported post-exertional fatigue severity. Analyses of covariance (ANCOVA), controlling for age and gender, assessed cross-sectional group differences, and cross-sectional linear regressions using the continuous PEM severity predictor paralleled these analyses.

Results
hiPEM patients reported greater symptom severity, frequency, and interference than loPEM counterparts (p's < .001). hiPEM patients also reported greater social disruption, depressive symptoms, and mood disturbance (p's ≤ .011). Groups did not differ in recent negative life experiences, perceived stress, or demographic variables. The results of regression analyses mirrored those of ANCOVAs.

Conclusion
This study replicates the association between PEM and symptom burden and additionally associates PEM with psychological distress; psychological distress could, however, be a consequence of symptom burden. Differences between hiPEM and loPEM CFS patients amplify the heterogeneity of diagnoses resulting from the Fukuda criteria. It is also possible that PEM identifies particularly distressed patients for whom psychological intervention would be most beneficial.
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Sci hub, https://sci-hub.se/10.1016/j.jpsychores.2019.109893
 
So the "loPEM" cohort included those who said that they didn't have PEM.
Participants were categorized into PEM groups on the basis of their response to this PEM item, which asks about “unusual fatigue following exertion that lasts for at least 24 hours”. Patients who described PEM as Severe or Very severe were classified as hiPEM, and patients who described the symptom as Very mild, Mild, or Moderate, or who did not endorse the symptom, were classified as loPEM1 . Although the dichotomization of continuous variables is clinically useful, we appreciate that manipulation of data in this manner can lead to loss of information. We have therefore also retained the continuous PEM variable for use in regression analyses.
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That seems problematic to me - is there any reason it wouldn't be?
 
Surprise surprise. If you divide a group of Fukuda diagnosed CFS patients into those that have significant PEM and those who don't you find the ones with PEM are sicker, less able to work, and more depressed, probably as a result of being sicker and less able to work. :banghead:

Why that leads to the conclusion that psychotherapy is the answer I don't know. Seems like a cop out to me. How about better care, better symptomatic treatment, less sigma, better access to disability benefits etc.

The only good thing from this is it demonstrates that nobody should be using Fukuda criteria for research.
 
MeSci said:
Not very impressive, Nancy Klimas.
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No, but as she's second from last I'm guessing she just allowed some hack access to her cohort. Which brings up the point of...is it a good idea to refuse access to other 'researchers' when we always hear from the you-know-whos that nobody wants to get into the field? I am not interested in defending her but I sort of almost feel that we can't have it both ways. Also, I wonder if it's possible that she doesn't have the power to refuse access even if she thinks her cohort or samples will be used to produce results favorable to psychs.
 
From the Discussion section.
Several strengths of this study deserve consideration. First, combined baseline samples of separate clinical trials yielded a relatively large analytic sample of 261 individuals. Trial recruitment spanned over a decade, supporting the generalizability of results. Further, PEM subgroups were statistically equivalent in terms of nearly all sociodemographic characteristics, including BMI and type of symptom onset, as well as on measures of stress, including perceived stress and recent negative life experiences. The hiPEM individuals demonstrated lower levels of employment/higher levels of disability and lower income than loPEM individuals; particularly as education levels were equivalent, these differences provide further evidence of the heightened levels of impairment experienced by the hiPEM group.
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Results will need to be replicated with more valid PEM assessment methodology (e.g., White et al., 2010), as our analysis of pre-existing data was limited by the assessment of PEM status with a single self-report item (see Jason, Evans, So, Scott, & Brown, 2015). We chose to dichotomize PEM on the basis of severity rather than absence/presence in order to approximate the prevalence rates of PEM in patients diagnosed with the Fukuda criteria found in previous studies (e.g., Maes et al., 2012), and when we dichotomized patients on the basis of those who endorsed or did not endorse any PEM, results were similar.
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This study relies on cross-sectional secondary data analysis that is limited to self-report, and it is therefore in itself insufficient to answer the question of whether or not PEM identifies a distinct subgroup of CFS patients. We have suggested possible alternative explanations for our results in the preceding paragraphs. Our study is further limited by the lack of a control or quasicontrol group; as such, it cannot directly replicate the analyses of Maes and colleagues (2012), and claims cannot be made about PEM in CFS compared to PEM in the general population.

Despite the methodological shortcomings of our study design and our assessment of PEM, the present study provides useful evidence for the heterogeneity of CFS patients diagnosed with the Fukuda criteria (1994) and the potential differentiation of CFS patients according to PEM status. A longitudinal study would be necessary, however, to identify whether PEM status influences CFS symptom expression over time to thereby more definitively establish the value of PEM status in CFS diagnosis.

Our research does suggest that PEM is, at the very least, a uniquely distressing symptom of CFS. Because this psychological distress is a potential maintaining factor of CFS (i.e., by inhibiting patients from engaging in tasks requiring physical or cognitive exertion and thereby compromising quality of life), PEM may also identify those patients who are in the greatest need of and would potentially benefit the most from psychological intervention. Future research could seek to determine whether hiPEM and loPEM patients respond differently to these treatments.
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Our research does suggest that PEM is, at the very least, a uniquely distressing symptom of CFS. Because this psychological distress is a potential maintaining factor of CFS (i.e., by inhibiting patients from engaging in tasks requiring physical or cognitive exertion and thereby compromising quality of life), PEM may also identify those patients who are in the greatest need of and would potentially benefit the most from psychological intervention.
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I just read this bit again. It's outrageous. How dare they suggest that it's psychological factors that make PEM worse and stop us engaging in activity. That shows a complete lack of understanding of PEM. I note they use references from White, Chalder et al as key sources of ideas.

Bah humbug.
 
Trish said:
I just read this bit again. It's outrageous. How dare they suggest that it's psychological factors that make PEM worse and stop us engaging in activity. That shows a complete lack of understanding of PEM. I note they use references from White, Chalder et al as key sources of ideas.

Bah humbug.
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This is the problem of the word 'malaise', I think. Outsiders coming to the area assume it's psychological malaise.
 
Trish said:
Surprise surprise. If you divide a group of Fukuda diagnosed CFS patients into those that have significant PEM and those who don't you find the ones with PEM are sicker, less able to work, and more depressed, probably as a result of being sicker and less able to work. :banghead:

Why that leads to the conclusion that psychotherapy is the answer I don't know. Seems like a cop out to me. How about better care, better symptomatic treatment, less sigma, better access to disability benefits etc.

The only good thing from this is it demonstrates that nobody should be using Fukuda criteria for research.
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These remarks all seem very pertinent to me.
 
Uh, yes, the thing that literally means "more symptoms of greater intensity" also means more symptom burden because it's literally what it means. Also: greater volume is associated with more space to hold things. Being confused by basic definitions is not a good look here.
PEM may identify patients who would most benefit from psychological intervention
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Literally the opposite. The very last thing that should be done with a high degree of PEM is doing more things. Good grief that's like suggesting that the more broken a bone currently is the more intensive physical rehabilitation should be.
psychological distress could, however, be a consequence of symptom burden
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Ya think? I mean it's literally something ME patients have been saying for decades and is also the most obvious common sense explanation but sure, it "could" be that more fuel leads to more intense fire.

I hope there is a good explanation for Klimas' name on this nonsense.
 
adambeyoncelowe said:
This is the problem of the word 'malaise', I think. Outsiders coming to the area assume it's psychological malaise.
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I think they also describe PEM somewhere in the paper as an increase in fatigue symptoms.. Don't have the energy to go back and check.

I got the feeling this was a paper and computer exercise. No actual patients given the opportunity of spending time with the researchers explaining how they experience PEM.
 
Trish said:
I think they also describe PEM somewhere in the paper as an increase in fatigue symptoms.. Don't have the energy to go back and check.

I got the feeling this was a paper and computer exercise. No actual patients given the opportunity of spending time with the researchers explaining how they experience PEM.
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One of my textbooks has "post exertional fatigue" as a symptom of CFS. Patients will have an increase in fatigue lasting one or two days. Oh if only.
 
Seems to be a University of Miami paper. However Klimas does have her name on it. At least three recent papers where she has had her name on have been pretty poor in my opinion. This one, the 23andMe genetic predisposition one (uses 23andMe miscalls), and the Modelling one (no validation data set, very few hormone measurements in actual data).
 
It is also possible that PEM identifies particularly distressed patients for whom psychological intervention would be most beneficial
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so is this implying that people who have ME (CCC) as opposed to Fukuda CFS are the patients with 'mental health issues' (?)
an attempt to return to the 'status quo' before the 'resurgence' of the use of M.E.(?)
 
Haven't read the paper in detail, but they shouldn't be using Fukuda in the first place, if the CDC has endorsed the IOM/NAM definition that requires PEM as the hallmark symptom of ME/CFS.

Or, has the CDC not made up it's mind about dropping Fukuda? It's bizarre to have two differing case definitions in this one institution that has by some indications modernized its attitude and policies around ME. What's going on?

And, some in the study say they don't have PEM! Then they don't have ME, or "cfs". This study supports the debunked PACE trial: have a heterogeneous group of study subjects including those without ME ("cfs") but include depression, and who knows what else, and make recommendations for pwME based on studying people with different illnesses.

From the study: "psychological distress could, however, be a consequence of symptom burden" Brilliant to conclude that PEM - ie. feeling desperately dreadful, even more so than usual, would be upsetting. And, somehow counseling is supposed to make pwME feel better when they have these symptom increases. Or, maybe think them away!

I agree,@Sly Saint, certainly two steps back.
 
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