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Post-exertional malaise
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==Patients' description== [[File:PEM1.JPG|300px|thumb|right|I think [https://twitter.com/hashtag/twofacesofme?f=tweets&vertical=default&src=hash #TwoFacesofME] is a really important hashtag. We're only out and about at our best, and our (more frequent) worst often remains hidden. I'm convinced it's why [[ME/CFS|#ME/CFS]] research funding is so low - the problem isn't visible enough. I'm seriously ill in both these photos.<ref>{{Cite web|url=https://twitter.com/JackCroxall/status/1085900441328803840 | title = I think #TwoFacesofME is a really important hashtag. We're only out and about at our best, and our (more frequent) worst often remains hidden. I'm convinced it's why #MEcfs research funding is so low - the problem isn't visible enough. I'm seriously ill in both these photos.pic.twitter.com/hNjK5140kv | last = Croxall | first = Jack | date = 2019-01-17 | website = twitter.com|language=en|access-date=2019-01-17}}</ref>]] [[File:PEM2.JPG|300px|thumb|right|#twofacesofME #MEcfs - It's not always easy to predict when you'll take a turn for the worst. It's not even easy to tell how you'll feel when you crash. You just know that at some point in the future, it's going to happen.<ref>{{Cite web|url=https://twitter.com/kaisecam/status/1085886323276349440 | title = #twofacesofME #MEcfs - It's not always easy to predict when you'll take a turn for the worst. It's not even easy to tell how you'll feel when you crash. You just know that at some point in the future, it's going to happen.pic.twitter.com/nTJVG63jRm | last = Kaise 🥄 | first = Mx | date = 2019-01-17 | website = twitter|language=en|access-date=2019-01-17}}</ref>]] [[File:PEM3.JPG|300px|thumb|right|#TwoFacesofME Workday me v's weekend me. I'm so grateful that most of the time I can work, but losing out on family time on a weekend to recover is hard.<ref>{{Cite web|url=https://twitter.com/RachelFrancis/status/1085940724774912000 | title = #TwoFacesofME Workday me vs weekend me. I'm so grateful that most of the time I can work, but losing out on family time on a weekend to recover is hard.pic.twitter.com/qZNiQaVHyD | last = Francis | first = Rachel | date = 2019-01-17 | website = twitter|language=en|access-date=2019-01-17}}</ref>]] [[File:PEM4.JPG|300px|thumb|right|First photo, me in my [[Severe and very severe ME|wheelchair]] on a rare trip out. Second photo, the inevitable [[crash]]. Eye half closed, [[Speech difficulties|slurred speech]], [[Dizziness|dizzy]], weak etc., etc. #TwoFacesofME<ref>{{Cite web|url=https://twitter.com/hopeforMEyet/status/1085909800766980096 | title = First photo, me in my wheelchair on a rare trip out. Second photo, the inevitable crash. Eye half closed, slurred speech, dizzy, weak etc., etc. #TwoFacesofMEpic.twitter.com/P2OPnnpQvF | last = Karen | date = 2019-01-17 | website = Twitter|language=en|access-date=2019-01-17}}</ref>]] [[File:PEM5.JPG|300px|thumb|right|#TwoFacesofME First photo from the morning, the other one from the afternoon ( when I failed to nap 30-60 minutes). I am Not [[Severe and very severe ME|severely ill]], and my life is ok, even [so] I wish that one day science will help me & all the #MeCfs sufferers around the globe.<ref>{{Cite web | title = #TwoFacesofME First photo from the morning, the other one from the afternoon ( when I failed to nap 30-60 minutes). I am Not severely ill, and my life is ok, even do I wish that one day science will help me & all the #MeCfs sufferers around the globe.pic.twitter.com/wmhfHcfP0p | url = https://twitter.com/Authorportrait/status/1085815918846832640 | website = Twitter | date = 2019-01-17|access-date=2019-01-17|language=en | first=Henry | last = Köhler}}</ref>]] [[File:PEM6.JPG|300px|thumb|right|What the [world] don't [see] two faces of M.E.<ref>{{Cite web|url=https://twitter.com/SharonTiday/status/1085122891220430848 | title = What the don't two faces of M.E.pic.twitter.com/DYZVhtyrG5 | last = CFDA Awareness# | first = | date = 2019-01-15 | website = Twitter|language=en|access-date=2019-01-17}}</ref>]] [[File:PEM7.JPG|300px|thumb|right|Joining #pwME sharing #TwoFacesofME for #MEAwareness 1: a fall day when I got outside (but ended up in bed a week) 2: what no one sees (constant [[Chronic pain|pain]], post exertional malaise & [[Sleep dysfunction|sleep deprivation]]) Bonus for comparison: snowboarding shortly after cancer treatment (but before ME)<ref>{{Cite web|url=https://twitter.com/ceibakoru/status/1085894325832040448 | title = Joining #pwME sharing #TwoFacesofME for #MEAwareness, 1: a fall day when I got outside (but ended up in bed a week), 2: what no one sees (constant pain, post exertional malaise & sleep deprivation). Bonus for comparison: snowboarding shortly after cancer treatment (but before ME)pic.twitter.com/EpsMLT8E11 | last = Ceiba 🌳Koru 🌀 | date = 2019-01-17 | website = Twitter|language=en|access-date=2019-01-17}}</ref>]] === An illness within an illness === PEM refers to a worsening of many ME/CFS symptoms as a result of physical or mental exertion. It consists of more than post-exertional fatigue and pain, and can cause severe debility.<ref name="Stussman2020" /> As one patient described it: <blockquote>"When I do any activity that goes beyond what I can do—I literally collapse—my body is in major pain, it hurts to lay in bed, it hurts to think, I can’t hardly talk—I can't find the words, I feel my insides are at war."<ref name="IOM2015" /></blockquote> Another patient emphasized that the feeling of PEM is very different from what one experiences as a healthy person: <blockquote>"PEM is like nothing else you will experience in healthy life; a combination of a hangover, the flu, finishing a 10k run, all at the same time at varying levels of severity."<ref>{{Cite news | url=https://twitter.com/Fatigo_MECFS/status/1050305665565102080 | title = Fatigo_MECFS on Twitter|work=Twitter|access-date=2018-10-11|language=en}}</ref></blockquote>Considering the serious but fluctuating debility PEM causes, ME/CFS expert Dr. [[Anthony Komaroff]] described it as "an illness within an illness".<ref>{{Cite news | url=https://phoenixrising.me/archives/11884 | title = Post-Exertional Malaise II: Perception and Reality By Jennifer M. Spotila, J.D. | last=Spotila | first=Jennifer | author-link = Jennifer Spotila|work=Phoenix Rising|access-date=2018-10-10|language=en-US}}</ref> === Energy conservation and pacing === Patients often report the feeling of a red line, an [[energy limit]] that if exceeded, will result in a [[crash]] or relapse. As one [[Norway|Norwegian] patient described: <blockquote>“....And suddenly it is just too much. The body turns itself off, as if it has gone on strike. You have pushed too much for too long, it repeats itself, and the body stops functioning.”<ref name="Lauren2011">{{Cite journal | last = Larun | first = Lillebeth | last2 = Malterud | first2 = Kirsti | date = May 2011 | title = Finding the right balance of physical activity: a focus group study about experiences among patients with chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/20580520|journal=Patient Education and Counseling|volume=83|issue=2|pages=222–226|doi=10.1016/j.pec.2010.05.027|issn=1873-5134|pmid=20580520}}</ref></blockquote>Energy conservation strategies such as [[pacing]] and the [[Energy Envelope Theory|envelope theory]] have been developed to minimize PEM while allowing patients to stay as active as possible.<ref name="Goudsmit2012">{{Cite journal | last = Goudsmit | first=Ellen M. | author-link = Elen Goudsmit | last2 = Nijs | first2 = Jo | authorlink2 = Jo Nijs | last3 = Jason | first3 = Leonard A. | authorlink3 = Leonard Jason | last4 = Wallman | first4 = Karen E.| date = 2012 | title = Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document|url=https://www.ncbi.nlm.nih.gov/pubmed/22181560|journal=Disability and Rehabilitation|volume=34|issue=13|pages=1140–1147|doi=10.3109/09638288.2011.635746|issn=1464-5165|pmid=22181560}}</ref> These techniques advise patients to balance energy availability and expenditure and to recognize early signs of PEM so they can reduce activity levels before a relapse occurs.
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