, 20 tweets, 31 min read Read on Twitter
18 myths & misconceptions of Post-Exertional Malaise #PEM in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

#PEM (aka PENE, "flare" or “crash”) is seriously debilitating symptom caused by exercise

#SickNotWeak #SickNotTired #pwME #chronicillness #medtwitter #MedEd
1. #PEM is just tiredness

No

#pwME experience <pathological> fatigue after #exercise which can be long-lasting and includes debilitating fatigue, flu-like symptoms, cognitive impairment, #sleep disturbance

@PNASNews #MECFS #MyalgicE #MedEd #medtwitter
pnas.org/content/114/6/…
2. #PEM is not a real

No

“there exists no medical condition.. where exertion.. causes #immune/ inflammatory-related symptoms like sore throat, tender lymph nodes, or flu-like feelings, yet 60%.. of.. [#pwME].. reported these symptoms”

@PLOSONE #MECFS
dx.plos.org/10.1371/journa…
3. Some #MECFS diagnostic criteria don’t even require #PEM, surely its not important

No

The Oxford and Fukuda Criteria don’t require #PEM which is part of the reason that the @NIH want such definitions to be “retired”

#chronicillness #pwME #MyalgicE
bit.ly/2DkVu96
4. #MECFS and #PEM is psychological

No

The @NIH position paper on #MECFS states #pwME “.are often treated with skepticism, uncertainty, and apprehension and labeled as deconditioned or having a primary psychological disorder”

@AnnalsofIM #medtwitter
bit.ly/2GdaYQt
5. #PEM is simply what happens when sedentary #MECFS patients exercise

No

These @PLOSONE studies show that exercise triggers a sustained #immune inflammatory signature in #pwME that is distinct from that in sedentary people

#SickNotWeak #SickNotTired
dx.plos.org/10.1371/journa…
6. #MECFS patients are simply ‘catastrophising’ about exercise

No

In a 2-day #exercise #CPET assay, #pwME showed significantly lower values for O2 consumption on day 2 which is consistent with an exercise-induced impaired aerobic capacity and #PEM

tandfonline.com/doi/abs/10.130…
7. #MECFS patients are deconditioned

No

These #exercise studies show that #pwME have “an increased reliance on glycolytic #metabolism and.. increased.. lactic acid.. [so] work intensity cannot be maintained, resulting in the reduction.. of activity.”

academic.oup.com/ptj/article/93…
8. It is not possible to get #PEM from simply showering or cooking

No

In #pwME where aerobic #metabolism is impaired, the requirement for “anaerobic energy even for normal.. daily living precipitates the symptom exacerbation seen in #PEM

#SickNotWeak
academic.oup.com/ptj/article/93…
9. #MECFS patients are malingerers who fake #PEM

No

“Physical therapists should be aware that the postexertion state in #pwME is characterized by.. measurable deficits in.. #metabolism & workload that would be nearly impossible.. to fabricate.”

#MedEd academic.oup.com/ptj/article/93…
10. My doc insists GET allows recovery if I push through my #PEM

No

"..aerobic energy.. processes fail to respond normally to #exercise.. in #pwME.. [so] incautiously applied #GET is likely to result in exacerbation of.. symptoms”

#SickNotWeak #MECFS
…nslational-medicine.biomedcentral.com/articles/10.11…
11. There is no objective way of measuring #PEM

No

@BioMedCentral studies found a significant decrease in the maximal O2 pulse following #exercise “..indicating compromised O2 delivery in #MECFS patients following induction of post-exertional malaise”

…nslational-medicine.biomedcentral.com/articles/10.11…
12. There is no scientific basis for #PEM

No

“After induction of #PEM, the threshold lowers at which anaerobic #metabolism accelerates in #MECFS [causing] premature anaerobiosis in #pwME.. further reducing the ability to do work”

@BioMedCentral #MedEd
…nslational-medicine.biomedcentral.com/articles/10.11…
13. Exercise is beneficial in many diseases, including #MECFS

No

#pwME currently represent a unique class of.. patients who do not reproduce maximal #CPET [exercise].. unlike [in] cardiovascular.., lung.., ..renal & pulmonary.. diseases”

#SickNotWeak
…nslational-medicine.biomedcentral.com/articles/10.11…
14. #GET clinical trials for #MECFS didnt report adverse events or #PEM

No

“Most studies failed to report on.. adverse reactions.. This might be.. why outside of clinical trials.. many #pwME [are] reporting deterioration with GET”

@Huisarts_Vink #MedEd ncbi.nlm.nih.gov/pmc/articles/P…
15. #PEM symptoms are vague and not diagnostic

No

“Using a binary.. regression model, only 4 post-exertional symptoms (fatigue-, #immune-, #sleep-, and #pain-associated symptoms) were needed to classify 92% of #MECFS.. accurately”

@PLOSONE #MedEd #pwME
dx.plos.org/10.1371/journa…
16. #pwME just dont want to #exercise, it has nothing to do with #PEM

No

“Based on the O2 uptake.., #pwME.. recovery after 24h was not completed.. This indicates an impaired recovery.. [due to].. postexertional malaise”

#SickNotWeak #SickNotTired
…nslational-medicine.biomedcentral.com/articles/10.11…
17. brain function in #MECFS cannot be affected by #PEM

No

“..exercise.. impaired cognitive performance and affected #brain function in #pwME.. [providing] objective evidence of the detrimental neurophysiological effects of post-exertion malaise”

sciencedirect.com/science/articl…
18. Physical deconditioning helps to maintain physical disability in #MECFS

No

These studies found that “..the value of the increase of cardiac output relative to the oxygen uptake.. is independent from motivation and deconditioning”

@BioMedCentral
…nslational-medicine.biomedcentral.com/articles/10.11…
sorry to scientists if I overlooked your biomedical studies of #PEM in #MECFS

Feel free to add additional scientific studies describing the biological basis of #PEM to this thread

#pwME #MyalgicE #SickNotWeak #SickNotTired #chronicillness #MedEd #medtwitter
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