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

A Canadian study

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

 

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.

 

Seems to me that one possibility is that the cancer and/or the treatment is enough of an immune challenge to trigger ME in a number of unlucky people?

 

I have a few friends that have sarcoidosis and PEM. Questionnaires are not very reliable.

https://www.sciencedirect.com/science/article/pii/S0889159113001967

 

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 ....”

 

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.

 

That's the Wikipedia definition: https://en.m.wikipedia.org/wiki/Post-exertional_malaise

 

Surprised it's not that bad but it wouldn't be Wikipedia's take on ME if it wasn't for bits like this:

It's just the defining symptom of a disease affecting tens of millions. No big deal. Low importance.

 

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/

 

Her interventions are exercise for cancer patients. She lectures in kinesiology. Should someone set her straight about use of terminology?

 

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:

https://clinicaltrials.gov/ct2/show/NCT03049384

 

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.