Anonymous
Not logged in
Talk
Contributions
Create account
Log in
Search
Editing
Post-exertional malaise
(section)
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Namespaces
Page
Discussion
More
More
Page actions
Read
Edit
Edit source
History
Warning:
You are not logged in. Your IP address will be publicly visible if you make any edits. If you
log in
or
create an account
, your edits will be attributed to your username, along with other benefits.
Anti-spam check. Do
not
fill this in!
== The distinctive characteristics of PEM == Four aspects differentiate the post-exertional malaise of ME/CFS patients from the exercise intolerance commonly reported in patients suffering from [[deconditioning]] or other conditions. === Timing === <embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="''Post-Exertional Malaise: History, Characteristics, Evidence'' (2015) By Dr. Lily Chu/Solve CFS">https://www.youtube.com/watch?v=hxJPrkWHcBo</embedvideo> First of all, there is the time lapse. While physical complaints are usually reported during or shortly after exercise, PEM often has a delayed onset, hours or sometimes even days after the original trigger. Yoshiuchi et al. (2007) for example wrote that: "after a briefer maximal exercise task, reports of worsening CFS symptoms were inconsistent or absent until 5 days after the challenge, a pattern not typically observed in real life."<ref name="Yoshiuchi2007">{{Cite journal | last = Yoshiuchi | first = Kazuhiro | last2 = Cook | first2 = Dane B. | last3 = Ohashi | first3 = Kyoko | last4 = Kumano | first4 = Hiroaki | last5 = Kuboki | first5 = Tomifusa | last6 = Yamamoto | first6 = Yoshiharu | last7 = Natelson | first7 = Benjamin H. | date = 2007-12-05 | title = A real-time assessment of the effect of exercise in chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/17655887|journal=Physiology & Behavior|volume=92|issue=5 | pages = 963–968|doi=10.1016/j.physbeh.2007.07.001|issn=0031-9384|pmc=2170105|pmid=17655887}}</ref> The authors noted that this delay could be used to distinguish ME/CFS from other fatiguing illness. Another study from Stanford University showed that in up to 37% of the 150 ME/CFS patients studied, PEM may not begin until a day or more after an [[Exertion|exertional]] trigger.<ref name="Chu2018" /> [[File:Rosa SEID.JPG|400px|thumb|left|Rosa age 25 in 1986 and mildly ill with [[Systemic Exertion Intolerance Disease#Diagnostic criteria|ME/CFS's core symptoms]]. In 2015 the [[SEID]] criteria were released. Rosa read about PEM and how it is delayed and makes [[List of symptoms in ME CFS|ME/CFS symptoms]] like [[Chronic fatigue|CF]], [[Orthostatic intolerance|OI]], and [[Cognitive dysfunction|cognition]] worse. Her life since [[Pediatric myalgic encephalomyelitis/chronic fatigue syndrome|age 17]] fell into place as she never connected her worsening symptoms with increased [[Exertion#Exertion in ME.2FCFS|physical or mental activity]] 24-72 hours prior. She believes not understanding PEM made her condition worsen over the years and is now disabled meeting the [[Canadian Consensus Criteria|CCC]] with PEM "[[Canadian Consensus Criteria#Definition|option]]"]] Patients may not be familiar with this characteristic of their relapses, since it is very counter-intuitive. As one patient noted:<blockquote>"It's really counter-intuitive to feel bad after a delay of 24 hours after exertion. It may take quite some time before people even make that connection, if ever. I only noticed it about three years in, and I hesitated to mention to others because I thought it might make me sound nuts."<ref name="s4me">{{Cite news | url=https://www.s4me.info/threads/s4me-submission-to-the-public-review-on-common-data-elements-for-me-cfs-concerns-with-the-proposed-measure-of-post-exertional-malaise.2220/ | title = S4ME: Submission to the public review on Common Data Elements for ME/CFS: Concerns with the proposed measure of post-exertional malaise|work=Science for ME|access-date=2018-10-10|language=en-US}}</ref></blockquote>Another time-related characteristic of PEM is a [[Recovery period is prolonged, usually taking 24 hours or longer|prolonged recovery period]]. In a 2010 study 25 M/CFS patients and 23 matched controls were followed up for seven days after performing a maximal cardiopulmonary exercise test. After two days, all controls subjects were recovered while only one ME/CFS patient was. Most (60%) of the ME/CFS participants reported that it took more than five days to fully recover from the test and many reported feeling at their worst 24 to 48 hours after the test.<ref name="VanNess2010">{{Cite journal | last = VanNess | first = J. Mark | authorlink = Mark VanNess | last2 = Stevens | first2 = Staci R. | authorlink2 = Staci Stevens | last3 = Bateman | first3 = Lucinda | authorlink3 = Lucinda Bateman | last4 = Stiles | first4 = Travis L. | last5 = Snell | first5 = Christopher R. | authorlink4 = Christopher Snell | date = Feb 2010 | title = Postexertional malaise in women with chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/20095909|journal=Journal of Women's Health|volume=19|issue=2|pages=239–244|doi=10.1089/jwh.2009.1507|issn=1931-843X|pmid=20095909}}</ref> Other studies have found the same prolonged recovery period in ME/CFS patients after exertion. A Dutch study for example noted: <blockquote>"For CFS patients, daily observed fatigue was increased up to 2 days after the exercise test. For controls, self-observed fatigue returned to baseline after 2 h."<ref name="Bazelmans2005">{{Cite journal | last = Bazelmans | first = Ellen | authorlink = Ellen Bazelmans | last2 = Bleijenberg | first2 = Gijs | author-link2 = Gijs Bleijenberg | last3 = Voeten | first3 = Marinus J.M. | last4 = van der Meer | first4 = Jos W.M. | author-link4 = Jos van der Meer | last5 = Folgering | first5 = Hans | date = Oct 2005 | title = Impact of a maximal exercise test on symptoms and activity in chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/16223622|journal=Journal of Psychosomatic Research|volume=59|issue=4|pages=201–208|doi=10.1016/j.jpsychores.2005.04.003|issn=0022-3999|pmid=16223622|quote=|via=}}</ref></blockquote>[[Charles Lapp|Lapp]] et al. followed 31 ME/CFS patients for 12 days after performing a maximal exercise test of 8-10 minutes. The average relapse lasted 8,82 days, although 22% of patients were still in relapse when the study ended at 12 days.<ref name="Lapp1997">{{Cite journal | last = Lapp | first = C.W. | authorlink = Charles Lapp | date = Jul 1997 | title = Exercise limits in chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/9236491|journal=The American Journal of Medicine|volume=103|issue=1 | pages = 83–84|issn=0002-9343|pmid=9236491}}</ref> In the Stanford study by [[Lily Chu|Chu]] et al. 87% of respondents indicated that they endure PEM for 24 hours or more. The authors concluded: <blockquote>"In many medical conditions, exertion-exacerbated symptoms usually start during exertion or immediately after and usually resolve immediately or shortly after exertion stops. In contrast, PEM may not start until hours or even days after the trigger starts or has been removed, may peak after the first day, and may not stop until hours to months later. This characteristic of PEM often leads patients and clinicians to believe that symptom exacerbations are random rather than associated with a trigger; most people will not intuit that symptoms are caused by a trigger that occurred hours to days prior unless specifically asked by their clinicians to pay attention."<ref name="Chu2018" /></blockquote> === Type of symptoms === The second characteristic of PEM is the [[List of symptoms in ME CFS|type of symptoms reported]]. The [[Canadian Consensus Criteria]], a 2003 clinical guideline formed by experts in the field, underlines that many PEM symptoms are [[Immune system|immune-related]]: <blockquote>"The [[malaise]] that follows exertion is difficult to describe but is often reported to be similar to the generalized [[pain]], discomfort and fatigue associated with the acute phase of [[influenza]]. Delayed malaise and fatigue may be associated with signs of immune activation such as a [[sore throat]], lymph glandular tenderness and/or [[Swollen lymph nodes|swelling]], general malaise, increased pain or [[Brain fog|cognitive fog]]."<ref name="CCC" /> </blockquote>[[Mark VanNess|VanNess]] et al. noted how [[Cognitive dysfunction|cognitive difficulties]] after exertion differentiate ME/CFS patients from healthy controls: <blockquote>"Another interesting difference between groups was the reported symptom of [[cognitive dysfunction]], for example, ''[[Brain fog|brain-fog]]'' or ''difficulty concentrating.'' Problems of this nature were not reported by any of the control subjects, whereas 12 patients (48%) experienced these problems: "Carrying on conversations was hard." "Can't think straight. "My mind was not clear."<ref name="VanNess2010" /></blockquote>This was elaborated by [[Lily Chu|Chu]] et al., the research team who conducted the first in-depth investigation on how ME/CFS patients describe their PEM: <blockquote>"There exists no medical condition the authors are familiar with where exertion or emotional distress causes immune/ [[Inflammation|inflammatory]]-related symptoms like sore throat, tender lymph nodes, or flu-like feelings, yet 60% and 36% of our subjects, respectively, reported these symptoms with either stimuli and about a quarter experienced all 3 with exertion. Conversely, symptoms typically associated with physical exertion in other conditions, like [[Dyspnea|shortness of breath]] or [[chest pain]] in chronic lung or [[heart]] disease, are rarely reported in ME/CFS. Furthermore, it is well-established that physical activity improves [[Mood swings|mood]], [[Sleep dysfunction|sleep]], and pain in both healthy people as well those with chronic illnesses like depression or anxiety yet our subjects report worsened sleep, mood, and pain with physical activity."<ref name="Chu2018" /></blockquote> === Triggers === A third characteristic of PEM is that it can be elicited by multiple types of triggers. Research has shown that ME/CFS patients experience PEM after [[Exertion#Exertion in ME.2FCFS|cognitive effort, physical or emotions]].<ref name="Stussman2020" /> A 2014 study for example followed up on 32 ME/CFS patients after completing a battery of neurocognitive tests. As the authors concluded: "following a challenging cognitive demand, fatigue significantly increased two days after testing", which was "suggestive of post-exertional symptom exacerbation following mental effort."<ref name="Arroll2014">{{Cite journal | last = Arroll | first = Megan A. | author-link = Megan Arroll | last2 = Attree | first2 = Elizabeth A. | last3 = O'Leary | first3 = John M. | last4 = Dancey | first4 = Christine P. | date = 2014-04-03 | title = The delayed fatigue effect in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)|url=https://www.tandfonline.com/doi/abs/10.1080/21641846.2014.892755|journal = Fatigue: Biomedicine, Health & Behavior |language=en|volume=2|issue=2 | pages = 57–63|doi=10.1080/21641846.2014.892755|issn=2164-1846}}</ref> Commenting on the [https://www.me-pedia.org/wiki/1980-81_Ayrshire_outbreak outbreak in West Kilbride, Ayrshire], Ramsay remarked: <blockquote>"Once the disease was established the most characteristic symptom was extreme exhaustion, particularly after exercise. The exhaustion also occurred after emotional or mental strain."<ref name="Ramsay1988" /> </blockquote>Some other precipitants of PEM that have been reported include positional changes and exposure to excessive light or sounds<ref>{{Cite web|url=http://anilvanderzee.com/dance-hermit-16-vs-sumo-baby-part-1/ | title = Dance hermit ’16 vs. Sumo Baby (part 1) {{!}} Anil van der Zee|website=anilvanderzee.com|language=en-GB|access-date=2018-10-13}}</ref>. While PEM was often thought of as symptom exacerbation after exercise, it is clear that for some ME/CFS patients even basic activities of daily living such as toileting, bathing, dressing, communicating, and reading can trigger relapses.<ref name="CDC-PEM-comments" /> As long time ME/CFS expert [[Jennie Spotila|Jennifer Spotila]] explained in a four-piece exploration of the phenomenon post-exertional malaise:<blockquote>"The use of the word ‘exertion’ may create the impression that PEM is triggered by strenuous or intense activity, but this is not the case […] Some patients need only attempt to make a simple meal or get dressed before PEM descends."<ref>{{Cite news | url=https://phoenixrising.me/archives/11883 | title = Unraveling Post-exertional Malaise By Jennifer M. Spotila|work=Phoenix Rising|access-date=2018-10-10|language=en-US}}</ref></blockquote>This was confirmed by Chu et al. <blockquote>"[…] our results provide formal evidence supporting patient narratives, clinician experiences, and current case definitions which assert that even tasks like walking, cooking, or reading can provoke PEM."<ref name="Chu2018" /> </blockquote>In some instances, the specific trigger of PEM cannot be identified.<ref name="CDC-PEM-comments">NINDS/CDC Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Post-Exertional Malaise Subgroup Draft Recommendations Public Review Comments Due January 31, 2018</ref> === Loss of functional capacity === A fourth distinctive element of PEM is often described as a loss of stamina and/or functional capacity. This refers to the results of the 2-day cardiopulmonary exercise test (CPET) procedure. A CPET is usually reproducible and normally has a test-retest difference of 7-12%<ref name="Stevens2018">{{Cite journal | last = Stevens | first = Staci | authorlink=Staci Stevens | last2 = Snell | first2 = Chris | authorlink2 = Christopher Snell | last3 = Stevens | first3 = Jared | last4 = Keller | first4 = Betsy | last5 = VanNess | first5 = J. Mark | authorlink5 = Mark VanNess | date = 2018 | title=Cardiopulmonary Exercise Test Methodology for Assessing Exertion Intolerance in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|url=https://www.frontiersin.org/articles/10.3389/fped.2018.00242/full|journal=Frontiers in Pediatrics|language=English|volume=6|doi=10.3389/fped.2018.00242|issn=2296-2360}}</ref>. ME/CFS patients however show strikingly lower results on several measures at the second CPET compared to the first, despite meeting objective markers of maximal effort. These results have been replicated by several research teams, though there is inconsistency on which measure (VO2 or maximal workload, at peak or ventilatory threshold), the decline in functional capacity is best represented. {| class="wikitable" ! colspan="8" |Physiological changes between first and second exercise test during 2-day CPET procedure in patients with ME/CFS |- | |Number of ME/CFS patients |VO2 peak |VO2 at VT |Workload peak |Workload at VT |HR peak |O2pulse at VT |- |[[Mark VanNess|VanNess]] et al. 2007.<ref name="VanNess2007" /> |6 | -22% | -26% |? |? |? |? |- |Vermeulen et al. 2010.<ref name="Vermeulen2010" /> |15 | -6.3% | -7.0% | -5.3% | -7.0% | -1.9% | -8.8% |- |[[Christopher Snell|Snell]] et al. 2013.<ref name="Snell2013" /> |51 | -5% | -10.8% | -7.2% | -55.2% |? |? |- |[[Betsy Keller|Keller]] et al. 2014.<ref name="Keller2014" /> |22 | -13.8% | -15.8% | -12.5% | -21.3% | -5.9% | -12.6% |- |Hodges et al. 2018.<ref name="Hodges2018" /> |10 | +5.3% | +6.1% | -6.7% | -11.4% | -0.6% |? |} The drop in functional capacity on the second CPET is usually not seen in other diseases. According to [[Betsy Keller|Keller]] et al. (2014) "ME/CFS patients currently represent a unique class of ill patients who do not reproduce maximal CPET measures, unlike individuals with cardiovascular disease, lung disease, end-stage renal disease pulmonary arterial hypertension and cystic fibrosis".<ref name="Keller2014">{{Cite journal | last = Keller | first=Betsy A. | last2 = Pryor | first2 = John Luke | last3 = Giloteaux | first3 = Ludovic | date = 2014-04-23 | title = Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO₂peak indicates functional impairment|url=https://www.ncbi.nlm.nih.gov/pubmed/24755065|journal=Journal of Translational Medicine|volume=12|pages=104|doi=10.1186/1479-5876-12-104|issn=1479-5876|pmc=4004422|pmid=24755065}}</ref> A preliminary study from [[New Zealand]] suggests that patients with MS do not display the same decline on the second day of exercise testing, as do patients with ME/CFS.<ref name="Hodges2018">{{Cite journal | last = Hodges | first = L. D. | authorlink = Lynette Hodges | last2 = Nielsen | first2 = T. | last3 = Baken | first3 = D. | date = Jul 2018 | title = Physiological measures in participants with chronic fatigue syndrome, multiple sclerosis and healthy controls following repeated exercise: a pilot study|url=https://www.ncbi.nlm.nih.gov/pubmed/28782878|journal=Clinical Physiology and Functional Imaging|volume=38|issue=4 | pages = 639–644|doi=10.1111/cpf.12460|issn=1475-097X|pmid=28782878}}</ref> Questions have however been raised about the clinical use of the 2-day CPET procedure. [[Christopher Snell|Snell]] et al. (2013) suggested it might be unethical to use this method since many ME/CFS patients might suffer a serious relapse as a result of exercise performance.<ref name="Snell2013" /> Others have noted that the CPET- procedure is not practical either. It cannot be used in patients with severe ME/CFS (thus excluding these patients from study) and because of cost and expertise, may not be available to most clinicians.<ref name="CDC-PEM-comments" /> CPET for ME/CFS is usually not covered by insurance and can cost hundreds of dollars.<ref name="Cotler2018" /> For these reasons PEM is usually assessed using self-reporting questionnaires.
Summary:
Please make sure your edits are consistent with
MEpedia's guidelines
.
By saving changes, you agree to the
Terms of use
, and you irrevocably agree to release your contribution under the
CC BY-SA 3.0 License
and the
GFDL
. You agree that a hyperlink or URL is sufficient attribution under the Creative Commons license.
Cancel
Editing help
(opens in new window)
Navigation
Navigation
Skip to content
Main page
Browse
Become an editor
Random page
Popular pages
Abbreviations
Glossary
About MEpedia
Links for editors
Contents
Guidelines
Recent changes
Pages in need
Search
Help
Wiki tools
Wiki tools
Special pages
Page tools
Page tools
User page tools
More
What links here
Related changes
Page information
Page logs