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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
#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 https://www.pnas.org/content/114/6/E911
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 https://www.pnas.org/content/114/6/E911
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 http://dx.plos.org/10.1371/journal.pone.0197811
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 http://dx.plos.org/10.1371/journal.pone.0197811
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
http://bit.ly/2DkVu96
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
http://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
http://bit.ly/2GdaYQt
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
http://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 http://dx.plos.org/10.1371/journal.pone.0197811
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 http://dx.plos.org/10.1371/journal.pone.0197811
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 https://www.tandfonline.com/doi/abs/10.1300/J092v14n02_07#.XFz_AzZQXXo.twitter
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 https://www.tandfonline.com/doi/abs/10.1300/J092v14n02_07#.XFz_AzZQXXo.twitter
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.” https://academic.oup.com/ptj/article/93/11/1484/2735315#.XF0C919IttY.twitter
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.” https://academic.oup.com/ptj/article/93/11/1484/2735315#.XF0C919IttY.twitter
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 https://academic.oup.com/ptj/article/93/11/1484/2735315#.XF0Hp7CUrrY.twitter
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 https://academic.oup.com/ptj/article/93/11/1484/2735315#.XF0Hp7CUrrY.twitter
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 https://academic.oup.com/ptj/article/93/11/1484/2735315#.XF0C919IttY.twitter
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 https://academic.oup.com/ptj/article/93/11/1484/2735315#.XF0C919IttY.twitter
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 …https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-12-104
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 …https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-12-104
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” …https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-12-104
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” …https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-12-104
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 …https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-12-104
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 …https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-12-104
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 …https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-12-104
No
“ #pwME currently represent a unique class of.. patients who do not reproduce maximal #CPET [exercise].. unlike [in] cardiovascular.., lung.., ..renal & pulmonary.. diseases”
#SickNotWeak …https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-12-104
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 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6176540/
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 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6176540/
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 http://dx.plos.org/10.1371/journal.pone.0197811
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 http://dx.plos.org/10.1371/journal.pone.0197811
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 …https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-8-93
No
“Based on the O2 uptake.., #pwME.. recovery after 24h was not completed.. This indicates an impaired recovery.. [due to].. postexertional malaise”
#SickNotWeak #SickNotTired …https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-8-93
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” https://www.sciencedirect.com/science/article/pii/S088915911730051X
No
“..exercise.. impaired cognitive performance and affected #brain function in #pwME.. [providing] objective evidence of the detrimental neurophysiological effects of post-exertion malaise” https://www.sciencedirect.com/science/article/pii/S088915911730051X
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 …https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-12-20
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 …https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-12-20
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
Feel free to add additional scientific studies describing the biological basis of #PEM to this thread
#pwME #MyalgicE #SickNotWeak #SickNotTired #chronicillness #MedEd #medtwitter
