Post-exertional Malaise in People With Chronic Cancer-Related Fatigue, 2020, Twomey et al

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Tom Kindlon

Senior Member (Voting Rights)
A Canadian study

https://www.jpsmjournal.com/article/S0885-3924(20)30098-1/fulltext?rss=yes

Post-exertional Malaise in People With Chronic Cancer-Related Fatigue
Email the author PhD Rosie Twomey
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PlumX Metrics
DOI: https://doi.org/10.1016/j.jpainsymman.2020.02.012
Article Info
Publication History
Published online:February 24, 2020Accepted:February 14, 2020
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Abstract
Context
Cancer-related fatigue (CRF) is a distressing and persistent sense of tiredness or exhaustion that interferes with usual functioning. Chronic CRF continues for months after curative cancer treatment is complete. Post-exertional malaise (PEM) is a worsening of symptoms after physical or mental activity, with limited investigations in people with chronic CRF.

Objectives
The purpose of this study was to identify and describe self-reported incidences of PEM in people with chronic CRF.

Methods
Participants (n = 18) were eligible if they scored ≤34 on the Functional Assessment of Chronic Illness Therapy—Fatigue scale and had a cancer-related onset of fatigue. Participants completed a brief questionnaire to assess PEM during a six-month time frame (the DePaul Symptom Questionnaire-PEM). In addition, a maximal exercise test was used to investigate self-reported symptom exacerbation (via an open-ended questionnaire) after strenuous physical exertion.

Results
On the DePaul Symptom Questionnaire-PEM, three participants met previously defined scoring criteria, which included experiencing moderate to very severe symptoms at least half of the time, worsening of fatigue after minimal effort, plus a recovery duration of >24 hours. Content analysis of responses to open-ended questionnaires identified five people who experienced a delayed recovery and symptoms of PEM after maximal exercise.

Conclusion
A subset of people with chronic CRF (up to 33% in this sample) may experience PEM. Exercise specialists and health care professionals working with people with chronic CRF must be aware that PEM may be an issue. Symptom exacerbation after exercise should be monitored, and exercise should be tailored and adapted to limit the potential for harm.

Key Words:
Exercise oncology, maximal exercise test, cancer rehabilitation
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These people may be getting PEM but PEM in ME is not just about exacerbation of symptoms, it is an unexpected exacerbation where mental effort causes physical symptoms and vice versa and there is an immune component whereby people get flu like symptoms with sore throats, swollen lymph glands an son on.

The recovery taking longer than 24 hours is also correct as far as it goes, but it misses the fact that PEM often does not even start for 24 hours with 3 days not being unusual.

I know we do not want to exclude anyone who might have ME but in research work for any disease the criteria used is often more precise than clinical use. I am no longer suitable for research work because I have too many confounding diseases.

So in post cancer patients they need to find people who have a delay in PEM and the immune involvement before they can say it is PEM as seen in ME. At the moment it is just a possibility that should be further explored.

Or maybe more precisely if this is PEM then we need another word for the delay and immune involvement people with ME get.
 
It may identify a problem with PEM being defined as increased fatigue after exercise , after cancer treatment. From the post cancer groups I belong to there seems to be a group of people who are much weaker after treatment ends, sometimes for years but gradually lifting. I hadn't identified this as PEM as they seem to be TATT.

My own health is much worse after cancer treatment and I'm looking forward to see how their experience matches mine. Curious to read the whole paper and see what clues there are.
 
This seems only about fatigue. If it is If they have Post exertion fatigue that isn’t PEM. I would be suspicious people trying to blur boundaries in the fatigue field.

I still don’t know If in the CFS community idelayed pronounced fatigue is being called PEM , I don’t think it Should because I think that malaise indicates illness and captures the flu and or pain and or ANS symptoms additional to fatigue. I don’t know if that’s considered controversial.
 
On a cheery note I just asked my Alexa to define PEM and she surprisingly said it “is one of the main symptoms of ME/CFS. PEM can be described as a delayed and significant exacerbation of ME/CFS symptoms that always follows physical activity and often follows cognitive activity

PEM is considered a cardinal symptom according to ....”
 
Cancer-related fatigue (CRF) is a distressing and persistent sense of tiredness or exhaustion that interferes with usual functioning
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This is definitely not the way the patients would describe it and I don't know why it has to be explained to medical professionals but you can't just make up your own definitions and disregard the actual experience of patients because you prefer the results it gives you, you're wasting everyone's time by doing that, yours included.

Way, way too much researcher bias involved even before getting to the starting line, stop doing that we literally have centuries of experience showing us how critical it is to be unbiased and objective and that words have meaning for a reason.
 
Cinders66 said:
On a cheery note I just asked my Alexa to define PEM and she surprisingly said it “is one of the main symptoms of ME/CFS. PEM can be described as a delayed and significant exacerbation of ME/CFS symptoms that always follows physical activity and often follows cognitive activity

PEM is considered a cardinal symptom according to ....”
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That's the Wikipedia definition: https://en.m.wikipedia.org/wiki/Post-exertional_malaise
 
Cinders66 said:
I would be suspicious people trying to blur boundaries in the fatigue field.
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That is exactly what is happening. They are trying to map our symptom profile onto other diseases to justify the whole MUS project and deny ME is a discrete condition.

They will just define it however suits them. Like they did with blurring the distinction between pacing and GET.

This is despicable stuff.
 
Lead author Rosie Twomey is originally from the UK before switching career path and moving to Canada -- this bit was interesting:

"...Very early in my research career, I was at the bottom of a hierarchy within an all-male team of senior researchers who were engaging in questionable research practices (QRPs). It was not possible for me to influence this situation at the time, but it influenced me. Over time, I engaged with the replication crisis and the open science movement via blogs, podcasts and Twitter. Fast forward to 2017, when I made a commitment to open and reproducible research. I have published the protocol to my current clinical trial in an open access journal and stated that I will make all data (where possible i.e. not identifiable) and code openly available. I have pre-registered on the Open Science Framework and I look forward to making use of the registered reports format in our future STORK journal. I introduced the idea of preprints to my research group and faced an unexpected amount of resistance that led me to reflect on how best to communicate the open science movement to my colleagues..."

http://storkinesiology.org/meet-the...-early-career-researcher-ecr-committee-chair/
 
Thought this was an interesting study because the authors used three methods to measure PEM. They used (I) the PEM subscale of the DePaul Symptom Questionnaire (II) an open-ended questionnaire about PEM and (III) recorded symptoms following an exercise test.

Most ME/CFS studies do much less than that!
 
Participants of this study were recruited as part of an ongoing RCT:

Twomey R, Martin T, Temesi J, Culos-Reed SN, Millet GY. Tailored exercise interventions to reduce fatigue in cancer survivors: study protocol of a randomized controlled trial. BMC Cancer. 2018 Jul 24;18(1):757. doi: 10.1186/s12885-018-4668-z https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6057053/

Primary outcome: Assessment of change in the Functional Assessment of Chronic Illness Therapy - Fatigue (FACIT-Fatigue) Scale [ Time Frame: Baseline to after the 12-week intervention, at 6 month and 12 month follow up. ]

The protocol's secondary outcomes, in addition to some more questionnaires, include many objective measures:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6057053/table/Tab2/?report=objectonly

At registration, 43 secondary outcomes were included:
  1. Assessment of change in The Functional Assessment of Cancer Therapy - General (FACT-G) [ Time Frame: Baseline and after the 12-week intervention. ] General quality of life instrument intended for use with a variety of chronic illness conditions.

  2. Assessment of change in Edmonton Symptom Assessment System-revised tiredness scale [ Time Frame: Baseline and after the 12-week intervention, and during follow up (6 and 12 months). ]
    Self-report questionnaire for the assessment of of nine common symptoms experienced by cancer patients.

  3. Maximal Isometric Force in the Knee Extensors [ Time Frame: Baseline and after the 12-week intervention. ]
    A reduction in maximal isometric force in the knee extensors measured before, during and after an intermittent cycling test.

  4. Cortical Voluntary Activation [ Time Frame: Baseline and after the 12-week intervention. ]
    A reduction voluntary activation (using transcranial magnetic stimulation) measured measured before, during and after an intermittent cycling test.

  5. Voluntary Activation [ Time Frame: Baseline and after the 12-week intervention. ]
    A reduction voluntary activation (using femoral nerve stimulation) measured before, during and after an intermittent cycling test.

  6. Potentiated Doublet Twitch Force [ Time Frame: Baseline and after the 12-week intervention. ]
    A reduction in potentiated quadriceps twitch force (from a high frequency doublet at 100 Hz) measured before, before, during and after an intermittent cycling test.

  7. Muscle Compound Action Potential (M-Wave) Peak-to Peak Amplitude [ Time Frame: Baseline and after the 12-week intervention. ]
    Evoked from supra-maximal stimulation of the femoral nerve and measured before, during and after an intermittent cycling test.

  8. Muscle Compound Action Potential (M-Wave) Peak-to Peak Duration [ Time Frame: Baseline and after the 12-week intervention. ]
    Evoked from supra-maximal stimulation of the femoral nerve and measured before, during and after an intermittent cycling test.

  9. Muscle Compound Action Potential (M-Wave) Area [ Time Frame: Baseline and after the 12-week intervention. ]
    Evoked from supra-maximal stimulation of the femoral nerve and measured before, during and after an intermittent cycling test.

  10. Motor Evoked Potential (MEP) Peak-to Peak Amplitude [ Time Frame: Baseline and after the 12-week intervention. ]
    Normalized to the maximal M-wave and measured before, during and after an intermittent cycling test.

  11. Motor Evoked Potential (MEP) Peak-to Peak Duration [ Time Frame: Baseline and after the 12-week intervention. ]
    Normalized to the maximal M-wave and measured before, during and after an intermittent cycling test.

  12. Motor Evoked Potential (MEP) Area [ Time Frame: Baseline and after the 12-week intervention. ]
    Normalized to the maximal M-wave and measured before, during and after an intermittent cycling test.

  13. Cortical Silent Period [ Time Frame: Baseline and after the 12-week intervention. ]
    Evoked from TMS and measured (from stimulation artifact to the continuous resumption of EMG) before, during and after an intermittent cycling test.

  14. Voluntary Electromyography (EMG) [ Time Frame: Baseline and after the 12-week intervention. ]
    Root mean square of the EMG signal during an MVC, measured before, during and after an intermittent cycling test.

  15. Amplitude of the Sleep-Wake Cycle [ Time Frame: Baseline and after the 12-week intervention. ]
    The mean difference between lowest and highest activity period, recorded with actigraphy.

  16. Peak Time of the sleep-wake Cycle [ Time Frame: Baseline and after the 12-week intervention. ]
    Time of day of the highest estimated level of wake, recorded by actigraphy.

  17. Mesor of the Sleep-Wake Cycle [ Time Frame: Baseline and after the 12-week intervention. ]
    Mean level of activity over 24 hours, recorded with actigraphy.

  18. inter-daily stability [ Time Frame: Baseline and after the 12-week intervention. ]
    the degree of regularity of the rest-activity patterns on individual days in the 24 h environment, recorded with actigraphy.

  19. intra-daily variability [ Time Frame: Baseline and after the 12-week intervention. ]
    the fragmentation of periods of rest and activity, recorded with actigraphy.

  20. L5 [ Time Frame: Baseline and after the 12-week intervention. ]
    The mean activity counts in the least active 5 h period in the average 24 h pattern) recorded with actigraphy.

  21. L5 mid [ Time Frame: Baseline and after the 12-week intervention. ]
    The central time of the L5 period, usually referring to the through of the activity period), recorded with actigraphy.

  22. Wake actigraphy [ Time Frame: Baseline and after the 12-week intervention. ]
    Amount of activity during wake, recorded with actigraphy

  23. Sleep Activity [ Time Frame: Baseline and after the 12-week intervention. ]
    Amount of activity during sleep periods, recorded with actigraphy

  24. Activity Index [ Time Frame: Baseline and after the 12-week intervention. ]
    Percentage of activity per epoch for wake and sleep, recorded with actigraphy.

  25. Time in bed [ Time Frame: Baseline and after the 12-week intervention. ]
    Time spent between the moment subject turn off the light to sleep and the moment he gets up, recorded with actigraphy.

  26. Actual Sleep Time [ Time Frame: Baseline and after the 12-week intervention. ]
    Time spent asleep during the night, recorded with actigraphy.

  27. Actual Wake Time [ Time Frame: Baseline and after the 12-week intervention. ]
    Time spent awaken during the night, recorded with actigraphy.

  28. Sleep Onset Latency [ Time Frame: Baseline and after the 12-week intervention. ]
    Time to fall asleep, recorded with actigraphy.

  29. Sleep Efficiency [ Time Frame: Baseline and after the 12-week intervention. ]
    Ratio between the time spent asleep and the total duration of sleep period, recorded with actigraphy.

  30. Fragmentation index [ Time Frame: Baseline and after the 12-week intervention. ]
    Indication of the sleep quality based on movement during night, recorded with actigraphy.

  31. Blood Biomarkers [ Time Frame: Baseline and after the 12-week intervention. ]
    Blood count, catecholamines, serotonin, cortisol, inflammatory markers and markers of oxidative stress.

  32. Assessment of change in the Centre for Epidemiological Studies Depression Scale (CES-D) questionnaire. [ Time Frame: Baseline and after the 12-week intervention. ]
    Self-report questionnaire for the assessment of health-related quality of life, specific to cancer type.

  33. Assessment of change in The Social Prevision Scale (SPS) [ Time Frame: Baseline and after the 12-week intervention. ]
    Self-report questionnaire for the assessment of social support.

  34. Assessment of change in The Functional Assessment of Cancer Therapy (FACT) Cancer Specific [ Time Frame: Baseline and after the 12-week intervention. ]
    Self-report questionnaire for the assessment

  35. Assessment of change in The Modified-Godin Leisure Time Exercise Questionnaire (GLTEQ) [ Time Frame: Baseline, after the 12-week intervention, and during follow up (6 and 12 months). ]
    Self-report questionnaire for the assessment of leisure time physical activity.

  36. Assessment of change in The Insomnia Severity Index (ISI) [ Time Frame: Baseline and after the 12-week intervention. ]
    Self-report questionnaire for the assessment of insomnia severity.

  37. Assessment of change in The Brief Pain Inventory Short Form (BPI-sf) [ Time Frame: Baseline and after the 12-week intervention. ]
    Self-report questionnaire for the assessment of pain.

  38. Assessment of change in Maximal Oxygen Uptake [ Time Frame: Baseline and after the 12-week intervention. ]
    The highest 30 second average oxygen uptake measured during an an incremental cycling test.

  39. Assessment of change in Muscle Cross-Sectional Area [ Time Frame: Baseline and after the 12-week intervention. ]
    Ultrasound measurement of the vastus lateralis and rectus femoris.

  40. Heart Rate Variability [ Time Frame: Baseline and after the 12-week intervention. ]
    Variation in the time interval between heartbeats.

  41. Assessment of change in Fat Mass [ Time Frame: Baseline and after the 12-week intervention. ]
    Measured using dual energy X-ray absorptiometry (DXA).

  42. Assessment of change in Fat Free Mass [ Time Frame: Baseline and after the 12-week intervention. ]
    Measured using dual energy X-ray absorptiometry (DXA).

  43. Assessment of change in Bone Mineral Density [ Time Frame: Baseline and after the 12-week intervention. ]
    Measured using dual energy X-ray absorptiometry (DXA).
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https://clinicaltrials.gov/ct2/show/NCT03049384
 
Last edited:
MSEsperanza said:
The protocol's secondary outcomes, in addition to some more questionnaires, include many objective measures.
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So it's just CFS where they half-arse their methodology.

Quick disclaimer though, they're going to claim that the superimposed twitch interpolation results suggest central fatigue. Note that ALL fatiguing disorders have this same pattern, regardless of whether they are muscular dystrophies, peripheral neuropathies or central nervous system neuropathies. Peripheral afferents are deeply coupled with spinal feedback, so evidence of "central fatigue" doesn't mean the cause isn't peripheral afferents.
 
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