{"id":31484,"date":"2021-06-11T10:02:13","date_gmt":"2021-06-11T09:02:13","guid":{"rendered":"https:\/\/wames.org.uk\/cms-english\/?p=31484"},"modified":"2021-06-11T10:14:51","modified_gmt":"2021-06-11T09:14:51","slug":"video-fatigue-pacing-pem-lessons-for-long-covid-from-me-cfs","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/video-fatigue-pacing-pem-lessons-for-long-covid-from-me-cfs\/","title":{"rendered":"Video: Fatigue, pacing &#038; PEM &#8211; lessons for long COVID from ME\/CFS"},"content":{"rendered":"<h3><strong><a href=\"https:\/\/www.youtube.com\/watch?v=EBopHtgKV4g\" target=\"_blank\" rel=\"noopener\">Fatigue, Pacing and PEM management: lessons from ME\/CFS<\/a> &#8211; with Dr Ben Marsh<\/strong><\/h3>\n<p>&nbsp;<\/p>\n<p><span class=\"style-scope yt-formatted-string\" dir=\"auto\">Dr Asad Khan talks to Dr Ben Marsh about his experience of ME\/CFS over the last 4 years, and what lessons the Long COVID community can learn about activity management, fatigue and post exertional malaise.<\/span><\/p>\n<p><span class=\"embed-youtube\" style=\"text-align:center; display: block;\"><iframe class=\"youtube-player lazyload\" width=\"880\" height=\"495\" data-src=\"https:\/\/www.youtube.com\/embed\/EBopHtgKV4g?version=3&#038;rel=1&#038;showsearch=0&#038;showinfo=1&#038;iv_load_policy=1&#038;fs=1&#038;hl=en-GB&#038;autohide=2&#038;wmode=transparent\" allowfullscreen=\"true\" style=\"border:0;\" sandbox=\"allow-scripts allow-same-origin allow-popups allow-presentation allow-popups-to-escape-sandbox\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" data-load-mode=\"1\"><\/iframe><\/span><\/p>\n<p>0:00 Introduction<br \/>\n1:17 Life before ME<br \/>\n2:02 When did it change?<br \/>\n2:50 The first 12 months<br \/>\n3:45 When ME kicked in<br \/>\n5:30 The Symptoms<br \/>\n8:53 PEM and its invisibility<br \/>\n11:40 The label of &#8216;pyschosomatic&#8217;<br \/>\n19:34 Graded Exercise Therapy<br \/>\n26:29 NICE removal of GET<br \/>\n27:51 PEM \/ GET risk<br \/>\n29:26 Difficulty of pacing<br \/>\n33:30 Physiology of PEM<br \/>\n38:52 CBT as a treatment<br \/>\n41:12 Summary<\/p>\n<p>Follow Dr Ben Marsh on twitter @bendymarsh<\/p>\n<p><span class=\"style-scope yt-formatted-string\" dir=\"auto\">REFERENCES: <\/span><\/p>\n<p><span class=\"style-scope yt-formatted-string\" dir=\"auto\">1) Nina Muirhead talk. <\/span><a class=\"yt-simple-endpoint style-scope yt-formatted-string\" dir=\"auto\" spellcheck=\"false\" href=\"https:\/\/www.youtube.com\/redirect?event=video_description&amp;redir_token=QUFFLUhqbTh4SzJrbkZGUlgtSC1RTC13T0l0emxEc3oyUXxBQ3Jtc0trS0F2TmQ1cVJ2VmxNa3kzOFc5VGs5NmtMRExrZVBvUGhoMlByalFCVTkyTGNIeXNvcEpndUFSSzBxdDcxUWgzbGRxQm0xdmJPdGNJckpjM1d1aUUwRFh5RWFZaGQzOVVwLUNqMUtwbWdVTTBEVk5pVQ&amp;q=https%3A%2F%2Fme-pedia.org%2Fwiki%2FNina_Muirhead8\" target=\"_blank\" rel=\"nofollow noopener\">https:\/\/me-pedia.org\/wiki\/Nina_Muirhead8<\/a><span class=\"style-scope yt-formatted-string\" dir=\"auto\"> min &#8211; mitochondrial energy score 13 min &#8211; Quality of life &amp; disease burden 15min &#8211; PEM: mental arithmetic <\/span><\/p>\n<p><span class=\"style-scope yt-formatted-string\" dir=\"auto\">2) POTS &amp; ME. Using invasive CPET. <\/span><a class=\"yt-simple-endpoint style-scope yt-formatted-string\" dir=\"auto\" spellcheck=\"false\" href=\"https:\/\/www.youtube.com\/redirect?event=video_description&amp;redir_token=QUFFLUhqbFpnZW5sd0pDN3dhbFJ3LURNNXQ4b0ZKU3YxZ3xBQ3Jtc0tsWGNVbXpFWmpPOVRNX09NYUZCZDF2ZFM1eDk4UVNxdG4zcEdqcTMyOUFnNTdzVTRXcFdtcGNJZy04eEwwR1AyTS1FYVp6R2VmS1hmbDlaNkc4dF9BdHF1Nk9acXNkVnd5em5lWFFmN3k5TElVLUhxdw&amp;q=http%3A%2F%2Fendmecfs.mgh.harvard.edu%2Ficpet%2F\" target=\"_blank\" rel=\"nofollow noopener\">http:\/\/endmecfs.mgh.harvard.edu\/icpet\/<\/a><\/p>\n<p><span class=\"style-scope yt-formatted-string\" dir=\"auto\">3) Dialogues MECFS films on science behind PEM and Pacing and Graded Exercise therapy <\/span><a class=\"yt-simple-endpoint style-scope yt-formatted-string\" dir=\"auto\" spellcheck=\"false\" href=\"https:\/\/www.youtube.com\/redirect?event=video_description&amp;redir_token=QUFFLUhqbFdsc0xaQ2VEQzRic3p0SjBDOGo5dGY3M0haUXxBQ3Jtc0tsLUhORFlQaElGNDZLTmdtTHhDWWpOUmlFeUJFamNEVTZra1cwUDU1UTBRN2xIeGFBY20yMjV4eWR0QWFNT3FmdEZVR3pER1BUbVZ3RThjNFlWNjJVMlB3VkhlNkdhdFVqaVNFVG5QTS0ySFRrTnUxbw&amp;q=https%3A%2F%2Fwww.dialogues-mecfs.co.uk%2Fvideos%2F\" target=\"_blank\" rel=\"nofollow noopener\">https:\/\/www.dialogues-mecfs.co.uk\/vid&#8230;<\/a><\/p>\n<p><span class=\"style-scope yt-formatted-string\" dir=\"auto\">4) Patients account of symptoms, Dialogues for ME, including videos with ME patients discussing:\u00a0 &#8211; reduced function &#8211; disease start &#8211; PEM &#8211; Cognitive impairment &#8211; sleep dysfunction &#8211; orthostatic intolerance &#8211; Pain &#8211; hypersensitivity <\/span><a class=\"yt-simple-endpoint style-scope yt-formatted-string\" dir=\"auto\" spellcheck=\"false\" href=\"https:\/\/www.youtube.com\/redirect?event=video_description&amp;redir_token=QUFFLUhqbFRMb0czVDdSemk2aEJNU19sS3d0Zkg3V3E5QXxBQ3Jtc0ttbDJ6Q1U0dUVKOE05R3c2SWxWWXFpYlJrNG85RUVyd0U2a1Z3RHgyWnFsTHJReFpjWVpad01VWWtTLWRxOXZ6a3FtQjZtOVhtUGFEWktVUmFVOTNzQlM1c3I3TzZGMlQyRDk0NDB4U043VmVRMWVaTQ&amp;q=https%3A%2F%2Fwww.dialogues-mecfs.co.uk%2Ffilms%2Fpatients-experiences%2F\" target=\"_blank\" rel=\"nofollow noopener\">https:\/\/www.dialogues-mecfs.co.uk\/fil&#8230;<\/a><\/p>\n<p><span class=\"style-scope yt-formatted-string\" dir=\"auto\">5) Kindlon T (2011) Reporting of harms associated with graded exercise therapy and cognitive behavioural therapy in myalgic encephalomyelitis\/ chronic fatigue syndrome. Bulletin of the IACFS\/ME 192: 59\u2013111. <\/span><\/p>\n<p style=\"padding-left: 40px;\"><span class=\"style-scope yt-formatted-string\" dir=\"auto\">&#8220;Fifty-one percent of survey respondents (range 28-82%, n=4338, 8 surveys) reported that GET worsened their health while 20% of respondents (range 7-38%, n=1808, 5 surveys) reported similar results for CBT.&#8221; <\/span><a class=\"yt-simple-endpoint style-scope yt-formatted-string\" dir=\"auto\" spellcheck=\"false\" href=\"https:\/\/www.youtube.com\/redirect?event=video_description&amp;redir_token=QUFFLUhqbG0yZWlOZWlURGw3RWJiNUN4QnNUQmFjeEduQXxBQ3Jtc0tucDUyLUNFb0pkc1VoSlJHRGhycjlMZmtwSVVjSnFzOVFvam5EdGVhN0QwVlNtMUVOdXRPOTRJeGswM0o0UXQ1QU1nVkJSQldRa3p1S18yVkZYVjNvMWN4ZWNWT1hSZDFxNjB1bzZFbmdvcWsyd1ZvZw&amp;q=https%3A%2F%2Fwww.researchgate.net%2Fpublication%2F216572185_Reporting_of_Harms_Associated_with_Graded_Exercise_Therapy_and_Cognitive_Behavioural_Therapy_in_Myalgic_EncephalomyelitisChronic_Fatigue_Syndrome\" target=\"_blank\" rel=\"nofollow noopener\">https:\/\/www.researchgate.net\/publicat&#8230;<\/a><\/p>\n<p><span class=\"style-scope yt-formatted-string\" dir=\"auto\">6) Geraghty K, Hann M, Kurtev S. Myalgic encephalomyelitis\/chronic fatigue syndrome patients\u2019 reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. Journal of Health Psychology. 2019;24(10):1318-1333. doi:10.1177\/1359105317726152 <\/span><\/p>\n<p style=\"padding-left: 40px;\"><span class=\"style-scope yt-formatted-string\" dir=\"auto\">Table 4.\u00a0<\/span><span class=\"style-scope yt-formatted-string\" dir=\"auto\"> Summary of key symptom change data from ME\/CFS patient surveys (2000\u20132015). Deterioration (slightly or much worse) CBT 17% GET 54% <\/span><a class=\"yt-simple-endpoint style-scope yt-formatted-string\" dir=\"auto\" spellcheck=\"false\" href=\"https:\/\/www.youtube.com\/redirect?event=video_description&amp;redir_token=QUFFLUhqa21JaHNHVVJ5NVZ0alRPSWZsZ2wyNl9jcFVfd3xBQ3Jtc0trM2NrdjRyM1pFbU41NFBzOGFFSk1CUWF5WnAwYmoxc2I4YmE1c1JSMXZSYjJGekZ3RFdRcXZ1Nnl0VFlsZFZpSlcwak9CMmJDMFhXQV9TZmpZTkx2OE51dmU0aGViZFVPcWpXMl9PQThDR3J5ZUlBYw&amp;q=https%3A%2F%2Fwww.dropbox.com%2Fs%2Fzn49o3rsukbuvkv%2FGeraghty%2520ME-CFS%2520patients%2527%2520reports%2520of%2520symptom%2520changes%2520following%2520CBT%252C%2520GET%2520and%2520pacing%2520treatments.pdf%3Fdl%3D0\" target=\"_blank\" rel=\"nofollow noopener\">https:\/\/www.dropbox.com\/s\/zn49o3rsukb&#8230;<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Fatigue, Pacing and PEM management: lessons from ME\/CFS &#8211; with Dr Ben Marsh &nbsp; Dr Asad Khan talks to Dr Ben Marsh about his experience of ME\/CFS over the last 4 years, and what lessons the Long COVID community can &hellip; <a href=\"https:\/\/wames.org.uk\/cms-english\/video-fatigue-pacing-pem-lessons-for-long-covid-from-me-cfs\/\">Continue reading <span class=\"meta-nav\">&rarr;<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[2471,9,6826,6196,405,584,585],"class_list":["post-31484","post","type-post","status-publish","format-standard","hentry","category-news","tag-activity-management","tag-chronic-fatigue","tag-dr-ben-marsh","tag-long-covid","tag-pacing","tag-pem","tag-post-exertional-malaise"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-8bO","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/31484","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/comments?post=31484"}],"version-history":[{"count":5,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/31484\/revisions"}],"predecessor-version":[{"id":31489,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/31484\/revisions\/31489"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=31484"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=31484"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=31484"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}