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List of famous people with long COVID

2026-02-07T16:05:56Z

Yakov:/* Athletes and sports personalities */ Jonathan Toews is Canadian not American

The 2019-2024 coronavirus pandemic has led to hundreds of thousands developing [[COVID-19]], a significant number of these continue to have symptoms many weeks or months later, known as [[long COVID]], also known as [[Post-Acute Sequelae of COVID-19]] (PASC). These "long haulers" come from many different walks of life, ages, and races, including people without pre-existing conditions who had mild [[COVID-19]].

==Actors, musicians and artists ==
{| class="wikitable sortable"
! Name
! Occupation
! Nationality
! Diagnosis
|-
| [[Lena Dunham]] || Actor || American || Dunham caught COVID-19 in March 2020, improving but still had long COVID symptoms in September 2020.<ref>{{Cite web |url = https://www.instagram.com/p/CDUUmlrjNlI/|last = Denham|first = Lena | date = Mar 2020 | website = Instagram | title = Update}}</ref>
|-
|Dave Navarro
|Guitarist from Jane's Addiction
|American
|Navarro caught COVID-19 in December 2021 and has been dealing with symptoms ever since. He self identified as a Covid Long-Hauler in People Magazine May 2022.<ref>{{Cite web|url=https://people.com/music/dave-navarro-details-his-experience-with-long-haul-covid/ | title = Dave Navarro Details His Experience with Long-Haul COVID: 'Fatigue and Isolation Is Pretty Awful' | date = May 31, 2022|first = Rachel |last = DeSantis | website = PEOPLE|language=en|access-date=2022-06-12}}</ref>
|-
|Gwyneth Paltrow
|Actor, GOOP Founder
|American
|Gwyneth caught COVID-19 "early on" and was reportedly having Long-COVID symptoms in April 2021.<ref>{{Cite web|url=https://people.com/health/gwyneth-paltrow-says-her-covid-symptoms-sometimes-come-back-a-little/ | title = Gwyneth Paltrow Says Her Long-Haul COVID Symptoms Have Been 'Pretty Wild' | date = April 15, 2021|first = Maria | last = Pasquini | website = PEOPLE|language=en|access-date=2022-06-12}}</ref> As of March 2023 she still had chronic symptoms and was seeing a functional medicine practitioner.<ref>{{Cite web|url=https://www.forbes.com/sites/brucelee/2023/03/18/gwyneth-paltrow-refers-to-her-long-covid-when-responding-to-bone-broth-backlash/|title=Gwyneth Paltrow Refers To Her Long Covid When Responding To Bone Broth Backlash|last=Lee|first=Bruce Y.|website=Forbes|language=en|access-date=2024-03-11}}</ref>
|-
| [[Billy Eilish|Billie Eilish]] || Singer/songwriter || American || Eilish was ill with COVID-19 for two months and was continuing to have symptoms in Dec 2021.<ref>{{Cite news |url = https://www.theguardian.com/music/2021/dec/14/billie-eilish-i-would-have-died-from-covid-19-if-i-hadnt-been-vaccinated| title = Billie Eilish: I would have died from Covid-19 if I hadn’t been vaccinated|publisher =The Guardian | first = Laura |last = Snapes | date = Dec 14, 2021}}</ref>
|-
| [[Marianne Faithfull]] || Singer and actor|| British (English) || Faithfull caught COVID-19 in April 2020, and still had long COVID in June 2021<ref>{{Cite news | url=https://www.telegraph.co.uk/music/what-to-listen-to/marianne-faithfull-may-never-sing/ | title = Marianne Faithfull: ‘I may never sing again’ | last = McCormick|first = Neil | date = 2021-04-24|work=The Telegraph|access-date=2021-06-29|language=en-GB|issn=0307-1235}}</ref>
|-
| [[Salma Hayek]] || Actor || Mexican || Hayek almost died from COVID-19 and went back to filming while still suffering from some lingering fatigue<ref>{{Cite news | title = Salma Hayek on ‘Hitman’s Wife’s Bodyguard,’ ‘Eternals’ and Her Secret Near-Fatal Battle With COVID|first = Marc|last = Malkin|publisher =Variety | date = May 19, 2021|url=https://variety.com/2021/film/features/salma-hayek-eternals-house-of-gucci-hitmans-wifes-bodyguard-1234975898/
|quote =Hayek knows about healing. She spent the better part of the past year recovering from a near fatal case of COVID-19, a fact she chose to keep quiet until now. During an interview over Zoom, she reveals that she battled the virus in the early days of the pandemic... Hayek spent about seven weeks isolated in a room of the house. At one point, she was put on oxygen. She still hasn’t fully regained the energy she once had. However, she returned to work in April to shoot Ridley Scott’s “House of Gucci,” in which she plays a clairvoyant who was convicted of helping Patrizia Reggiani (Lady Gaga) orchestrate the 1995 killing of her ex-husband Maurizio Gucci (Adam Driver), an heir to the Gucci fashion empire. “It was not a lot of time,” Hayek says. “It was easy. It was the perfect job to just get back into it. I had started doing Zooms at one point, but I could only do so many because I would get so tired.”}}</ref>
|-
| [[Gez Medinger]] || Filmmaker, science journalist and former runner || British || In March 2020, Gez Medinger's COVID-19 symptoms started. His symptoms include waves of fatigue he describes as "like you've been drugged", headaches, severe cognitive problems, [[post-exertional malaise]] and skin problems.<ref name="RNZ2020">{{Cite news | url=https://www.rnz.co.nz/news/on-the-inside/426467/covid-19-s-long-shadow-the-light-at-the-end-of-the-tunnel-just-isn-t-there | title = Covid-19's long shadow: 'The light at the end of the tunnel just isn't there' | date = Sep 19, 2020 | first = Louise | last = Thornley |publisher=RNZ}}</ref>
|-
| [[Alyssa Milano]] || Actor, singer, producer and author || American || Diagnosed with COVID-19 in April 2020 and needed hospital treatment in August.<ref>{{Cite tweet|url=https://twitter.com/alyssa_milano/status/1292271830359662592 | title = Alyssa Milano status|user=Alyssa Milano|website=Twitter|language=en|access-date=2020-09-23 | date = Sep 2020}}</ref><ref>{{Cite web|url = https://people.com/health/alyssa-milano-wants-people-to-get-vaccinated-as-she-continues-to-deal-with-long-haul-covid/ | website = People | title = Alyssa Milano Says Long-Haul COVID Has 'Impacted Every Part of My Health' | date = May 25, 2021|first = Julie | last = Mazziotta}}</ref> She still had symptoms 2 years later in April 2022 and identified as a long hauler.<ref>{{Cite web|url=https://www.nbcnewyork.com/news/coronavirus/alyssa-milano-details-long-covid-battle-every-symptom-imaginable/3658305/|title=Actress Alyssa Milano Details Long COVID Battle: ‘Every Symptom Imaginable'|last=Gaudino • •|first=Linda|date=2022-04-22|website=NBC New York|language=en-US|access-date=2024-03-11}}</ref>
|-
| [[Emma Samms]] || Actor|| British || Caught COVID-19 in March, was still ill in September<ref>{{Cite web|url=https://people.com/tv/dynasty-emma-samms-talks-long-covid-symptoms/ | title = Dynasty Star Emma Samms Details Her Months-Long COVID-19 Symptoms, Like 'Panic-Inducing' Fatigue|publisher=People|language=en|access-date=2020-09-23}}</ref>
|-
|[https://www.joshuaroman.com/ Joshua Roman]
|Cellist and Composer
|American
|Roman has struggled with Long Covid since 2020 and has had active Covid Infections 3 times. He is working through the experience in his newest work ''- [https://www.joshuaroman.com/projects/immunity Immunity]''
|-
|Dianna Cowern
|YouTuber
|American
|Developed severe Long Covid around July 2022<ref>{{Cite web|url=https://www.cbsnews.com/colorado/news/youtuber-physics-girl-long-covid-sister-helps-from-denver/|title=YouTuber "Physics Girl" dealing with long COVID as her sister helps from Denver - CBS Colorado|last=Arenas|first=Jasmine|date=2023-03-05|website=www.cbsnews.com|language=en-US|access-date=2024-03-11}}</ref> and had not recovered as of December 2023, requiring care from her husband.<ref>{{Citation|title=Dianna Health Update from SmarterEveryDay|url=https://www.youtube.com/watch?v=xbcjf-hrOAs|access-date=2024-03-11|language=en}}</ref>
|}

==Athletes and sports personalities==
{| class="wikitable sortable"
! Name
! Occupation
! Nationality
! Symptoms
|-
| [[Oonagh Cousins]] || Rower ||British || After 7 months with Long COVID, Oonagh was steadily improving but unable to train, with symptoms including [[fatigue]] and [[cognitive dysfunction|brain fog]]. She said "On the worst days you struggle to walk or cook a meal or compose an email... As time goes on, you are more able to see friends or go for a short jog." "On the worst days you wake up, and you're like, 'I can't wait until it's night time again'.<ref>{{Cite news | title = Long Covid: Oonagh Cousins, GB rower, on the effects | url = https://www.bbc.co.uk/sport/rowing/54702500 | publisher =BBC Sport | first =Katie |last =Falkingham | date = Nov 4, 2020}}</ref>
|-
| [[Grigor Dimitrov]] || Tennis player ||Bulgarian || Dimitrov described being almost recovered after four months "I feel way, way better - I don't even take naps any more or anything like that."<ref name="dimitrov-walton">{{Cite news | title = 'Long covid': Grigor Dimitrov on still suffering from coronavirus symptoms |url = https://www.bbc.co.uk/sport/54872855|first =Laura|last = Scott|publisher =BBC Sport | date =November 13, 2020}}</ref>
|-
| [[Tanysha Dissanayake]] || Tennis Player ||British || Former British junior Tanysha Dissanayake has retired from tennis at the age of 21 due to the effects of long Covid, saying she feels “a million years away” from being able to play again. <ref>{{Cite web |website =Eurosport |url = https://www.eurosport.com/tennis/former-british-junior-tanysha-dissanayake-who-played-against-emma-raducanu-retires-aged-21-due-to-lo_sto9191662/story.shtml| title = FORMER BRITISH JUNIOR TANYSHA DISSANAYAKE, WHO PLAYED AGAINST EMMA RADUCANU, RETIRES AGED 21 DUE TO LONG COVID| date =Oct 17, 2022}}</ref>
|-
| [[Chris Froome]] || Road Racing Cyclist ||Kenyan-British || Froome - a seven-time Grand Tour winner - said that Covid impacted on his heart and his VO2 max, which is the amount of oxygen someone can consume during exercise. <ref>{{Cite web |website =Eurosport |url = https://www.eurosport.com/cycling/tour-de-france/2023/chris-froome-reveals-the-long-term-impacts-of-contracting-covid-19-at-the-tour-de-france-a-heavy-imp_sto9262330/story.shtml| title = CHRIS FROOME REVEALS THE LONG-TERM IMPACTS OF CONTRACTING COVID-19 AT THE TOUR DE FRANCE: 'A HEAVY IMPACT ON THE HEART' | date =Dec 7, 2022}}</ref>
|-
|[[Eduardo Rodriguez]] || Baseball pitcher for the Boston Red Sox, now with Detroit Tigers ||Venezuelan|| Developed fatigue and myocarditis after COVID-19, and was unable to play for the rest of 2020<ref>{{Cite journal | last = Morley|first = John E. | date = 2020-10-05 | title = COVID-19 — The Long Road to Recovery|url=https://doi.org/10.1007/s12603-020-1473-6|journal=The journal of nutrition, health & aging|language=en|doi=10.1007/s12603-020-1473-6|issn=1760-4788|pmc = 7533666}}</ref><ref>{{Cite web|url=https://www.usatoday.com/story/sports/mlb/2020/09/26/red-sox-eduardo-rodriguez-cleared-after-covid-related-heart-issue/3546971001/ | title = Red Sox pitcher Eduardo Rodriguez cleared for physical activity after COVID-related heart issue|last = Gleeson | first = Scott|website=USA TODAY|language=en-US|access-date=2020-11-07}}</ref>
|-
| [[Michael Ojo]] || Basketball player ||American || Died aged 27 during training in Serbia as a result of heart-related complications. Ojo had appeared to have recovered from COVID-19 rather than having the recurring or persistent symptoms that [[long COVID|long-haulers describe]].<ref>{{Cite web|url=https://www.cbsnews.com/news/michael-ojo-former-florida-state-center-dies-age-27/ | title = Former Florida State center Michael Ojo dies after collapsing during training at age 27 | website = CBS news|language=en-US|access-date=2020-11-07}}</ref>
|-
| [[Jonny Walton]] || Rower ||British || Walton described his early symptoms as: "My heart rate was massively up. We do do a lot of altitude training but it was like being at altitude and having to breathe through a straw... We got on the rowing machine and it appeared that my physiology had just gone overnight, and just kind of fallen off a cliff". He is now back in training and fully recovered.<ref name="dimitrov-walton" />
|-
| [[Jonathan Toews]] || Hockey Player ||Canadian||He announced on February 19, 2023 that he was still suffering from symptoms of long COVID and Chronic Immune Response Syndrome. He offered no timetable for his return, commenting, "it has reached the point where I had no choice but to step back and concentrate on getting healthy."<ref>{{Cite web|url=https://news.yahoo.com/blackhawks-c-toews-dealing-long-202430802.html | title = Blackhawks C Toews dealing with long COVID-19 symptoms | website = Yahoo! Sports|language=en-US}}</ref> On April 13, Blackhawks general manager Kyle Davidson announced that the team will not re-sign Toews after his contract expires at the end of the season.
|-
|}

==TV presenters, Authors, journalists and writers ==
{| class="wikitable sortable"
|-
! Name || Occupation || Nationality || Symptoms
|-
|[[Chris Cuomo]] || TV presenter/media personality || American || Caught COVID-19 in April, and was still ill three months later<ref>{{Cite web |website =YouTube |url = https://www.youtube.com/watch?v=utFi8leu8hY| title = Chris Cuomo Is Still Fighting Lingering COVID-19 Effects | date =Jul 15, 2020}}</ref>
|-
|[[Antony Loveless]] || Military author and former war correspondent || British || Long covid left him partner disabled, struggling to walk, and "robbed of normal life", along with his partner. Loveless developed neutropenia, [[postural orthostatic tachycardia syndrome]] (POTS), and chronic "covid tongue", and partner Claire Hooper developed type II diabetes, severe difficulty walking, and [[hypertension|high blood pressure]].<ref name="normallife">{{Cite news |url = https://www.mirror.co.uk/news/uk-news/long-covid-robbed-normal-life-25631568 | title = Man 'robbed of normal life' by Long Covid after falling ill with virus alongside partner | first =Susie |last = Boniface | date = Dec 6, 2021|publisher = The Mirror}}</ref><ref name="forgotten-victims">{{Cite news | publisher =The Mirror |url = https://www.mirror.co.uk/news/politics/long-covid-victims-plan-b-25664098| title = These are the forgotten victims of Covid. Think about them when you moan about Plan B | date =Dec 10, 2021}}</ref>
|-
| [[Michelle Mone]] || Baroness and politician || British || Mone reported that long COVID left her breathless and losing weight.<ref>{{Cite news |url = https://www.mirror.co.uk/3am/celebrity-news/michelle-mone-drops-another-15-24317025 | title = Michelle Mone drops another 1.5 stone after Covid battle and shows off results|publisher =The Mirror | first =Carly |last =Hacon | date =Jun 15, 2021}}</ref>
|-
| [[Carol Voderman]] || TV presenter and author || British || Struggled to walk more than 100 yards for three months.<ref>{{Cite news | publisher=The Independent |url = https://www.independent.co.uk/arts-entertainment/tv/news/carol-vorderman-long-covid-gmb-b1865406.html | title = Carol Vorderman says she ‘couldn’t walk 100 yards’ for three months after catching long Covid | first =Isobel |last =Lewis | date =June 14, 2021}}</ref>
|-
|}

==Politicians ==
{| class="wikitable sortable"
! Name
! Occupation
! Nationality
! Diagnosis
|-
| [[Andrew Gwynne]] MP|| Politician || British || Caught COVID-19 in March 2020, still ill and walking very slowly 6 months later<ref>{{Cite web|url=https://www.newstatesman.com/politics/health/2020/09/rise-long-haulers-how-long-does-covid-19-last-patients | title = The rise of the “long haulers”: how long does Covid-19 last in patients?|website=New Statesman|language=en|access-date=2020-09-23}}</ref>
|-
|Sen. Jim Inhofe (R-OK)
|Politician
|American
|Retired in 2022 due to Long Covid.<ref>{{Cite web|url=https://news.yahoo.com/gop-ex-sen-inhofe-retired-184534096.html|title=GOP Ex-Sen. Inhofe Retired Due To Long COVID After Opposing COVID Aid|date=2023-02-24|website=Yahoo News|language=en-US|access-date=2024-02-17}}</ref>
|-
|Sen. Tim Kaine (D-VA)
|Politician
|American
|Since 2020, still serving.<ref>{{Cite web|url=https://www.politico.com/news/2022/08/08/long-covid-congress-kaine-00049921|title=Tim Kaine has long Covid. That’s not moving Congress to act.|last=Ollstein|first=Alice Miranda|date=2022-08-08|website=POLITICO|language=en|access-date=2024-02-17}}</ref>
|}

==Well-known scientists and academics==


==Other famous people ==
{| class="wikitable sortable"
! Name
! Occupation
! Nationality
! Diagnosis
|-
| [[Jazmin Grimaldi]] ||Daughter of Monaco's Prince Albert II || Monegasque || Re-hospitalized with COVID-19 a month after her first hospitalization<ref>{{Cite web|url=https://www.ibtimes.co.uk/jazmin-grimaldi-was-hospitalised-again-worsening-covid-19-symptoms-1682240 | title = Jazmin Grimaldi was hospitalised again for worsening COVID-19 symptoms | date = 2020-08-20 | website = International Business Times UK|language=en|access-date=2020-11-07}}</ref>
|-
|Dianna Cowern (Physics Girl)
|Youtuber
|American
|Caught COVID-19 in July 2022 <ref>{{Cite tweet|url=https://twitter.com/thephysicsgirl/status/1678425612166520832?lang=en|title=Today marks one year since I got COVID|user=thephysicsgirl|last=Cowern|first=Dianna|date=July 10, 2023|quote=Today marks one year since I got COVID. I’m finally starting to see tiny bits of progress in my recovery, which I feel cautiously optimistic about.

But today I mostly feel a profound grief, missing the life I had a year ago. 😔

#LongCovid|archive-url=https://archive.is/mMMI4|archive-date=January 14, 2024|url-status=live|access-date=January 14, 2024}}</ref>and has been bed bound with ME/CFS, MCAS, and POTS since January 2023 <ref>{{Cite tweet|url=https://twitter.com/thephysicsgirl/status/1664614439700795392|title=It’s been nearly 5 months of being completely bedridden.|user=thephysicsgirl|last=Cowern|first=Dianna|date=January 14, 2024|quote=It’s been nearly 5 months of being completely bedridden. I’ve made very little progress. I can still barely move, or think or talk.

I want to be out in the world living a life. My body hurts. But my heart hurts more.

I wish I had a more positive update.|archive-url=https://archive.md/nV94i|archive-date=January 14, 2024|url-status=live|access-date=January 14, 2024}}</ref>
|-
|
|}

==See also ==
*[[Long COVID]]
*[[Post-COVID-19 illness]]
*[[List of famous people with ME, CFS, and/or FMS]]

==Learn more ==
*May 2021, [https://people.com/health/alyssa-milano-wants-people-to-get-vaccinated-as-she-continues-to-deal-with-long-haul-covid/ Alyssa Milano Says Long-Haul COVID Has 'Impacted Every Part of My Health'] - People
*April 2021, [https://people.com/health/gwyneth-paltrow-says-her-covid-symptoms-sometimes-come-back-a-little/ Gwyneth Paltrow Says Her Long-Haul COVID Symptoms Have Been 'Pretty Wild'] - People
*May 2022, [https://people.com/music/dave-navarro-details-his-experience-with-long-haul-covid/ Dave Navarro Details His Experience with Long-Haul Covid: 'Fatigue and Isolation is Pretty Awful'] - People

==References==
{{Reflist}}

[[Category:Lists]]
[[Category:People]]
[[Category:People with long COVID]]

Severe acute respiratory syndrome

2025-10-15T21:43:44Z

Yakov:/* Post-SARS syndrome */ Add study by Li et al 18 year follow up

'''Severe Acute Respiratory Syndrome''' or '''SARS''' is a respiratory [[viral infection]] caused by the highly Infectious [[Severe acute respiratory syndrome coronavirus|SARS-CoV]] coronavirus.<ref name="Warnes2015" /><ref name="Hui2010">{{Cite journal | last = Hui | first = David S.C. | author-link = | last2 = Chan | first2 = Paul K.S. | authorlink2 = | date = Sep 2010 | title = Severe Acute Respiratory Syndrome and Coronavirus|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7127710/|journal=Infectious Disease Clinics of North America|volume=24|issue=3 | pages = 619–638|doi=10.1016/j.idc.2010.04.009|issn=0891-5520|pmc=7127710|pmid=20674795|access-date=|quote=|via=}}</ref><ref name="Xiao2017" /> It is a potentially deadly illness that quickly spread around the world in 2003, infecting around 8,000 people, with 9.6% of those infected dying.<ref name="Warnes2015">{{Cite journal | last = Warnes | first = Sarah L. | last2 = Little | first2 = Zoë R. | last3 = Keevil | first3 = C. William | date = 2015-11-10 | title = Human Coronavirus 229E Remains Infectious on Common Touch Surface Materials|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4659470/|journal=mBio|volume=6|issue=6|doi=10.1128/mBio.01697-15|issn=2150-7511|pmc=4659470|pmid=26556276}}</ref> SARS causes [[flu-like symptoms]].<ref name=":0">{{Cite web|url=https://www.webmd.com/lung/lung-what-is-sars | title = SARS (Severe Acute Respiratory Syndrome): Symptoms, Causes, Treatment|website=WebMD|language=en|access-date=2020-03-28}}</ref>

== Symptoms ==
Symptoms are similar to the flu.<ref name=":0" />
* A [[fever]] over 100.4 F (38 C)
* [[Chill]]s
* [[Myalgia|Muscle aches]]<ref name=":0" />
About 1 in 5 people with SARS may also get diarrhea.<ref name=":0" />

'''Symptoms Can Worsen Fast'''

A dry cough can develop 2 to 7 days into the illness. This cough can keep the body from getting enough oxygen. 1 in 10 people with SARS will need a machine to help them breathe.<ref name=":0" />

'''Can Lead to Other Health Problems'''
* pneumonia
* heart failure
* liver failure<ref name=":0" />
People who are over age 60 and have chronic illness like [[diabetes]] or [[hepatitis]] are most likely to have these problems.<ref name=":0" />

==Methods of transmission==
[[File:Coronavirus_transmission_SARS.png|left|thumb|border|upright=1.3|'''The coronavirus that causes SARS can be transmitted by droplets containing the virus during close contact, from touching surfaces containing droplets, or from respiratory droplets in the air.'''<ref name="Xiao2017">{{Cite journal | last = Xiao | first = Shenglan | last2 = Li | first2 = Yuguo | last3 = Wong | first3 = Tze-wai | last4 = Hui | first4 = David S.C. | date = 2017-07-20 | title = Role of fomites in SARS transmission during the largest hospital outbreak in Hong Kong | url =https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0181558|journal=PLOS ONE|language=en|volume=12|issue=7| pages = e0181558|doi=10.1371/journal.pone.0181558|issn=1932-6203|pmc = 5519164|pmid=28727803}}</ref> Source: Xiao et al. 2017. [https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0181558 PLoS ONE 12(7): e0181558.]]]
{{clear}}

==Post-SARS syndrome==
The name '''post-SARS syndrome''' or '''Chronic post-SARS''' was proposed by Moldofsky et al. (2011) to describe those survivors of the 2003 SARS outbreak who remained too ill to work 8 years later.<ref name="Moldofsky2011"/> Moldofsky's described post-SARS syndrome as similar to [[fibromyalgia]] and [[chronic fatigue syndrome]], better known as ME/CFS.<ref name="Moldofsky2011" /> Post-SARS syndrome was described as chronic (lasting over 6 months), with [[chronic fatigue|persistent fatigue]], widespread [[myalgia|muscle pain]], weakness, [[depression]], and [[unrefreshing sleep]] with [[sleep apnea|sleep apneas/hypopneas]], sleep EEG abnormalities, post-sleep fatigue and post sleep sleepiness. An earlier study found that 27% of hospitalized SARS survivors in [[Hong Kong]] met the criteria for ME/CFS six years later, with the illness appearing immediately after patients contacted SARS.<ref name="Lam2009" /> A clinical observational study<ref>{{Cite journal | title = Multiomic characterisation of the long-term sequelae of SARS survivors: a clinical observational study | last1 = Li | first1 = Kuan | last2 = Wu | first2 = Qian | last3 = Li | first3 = Hongjie | last4 = Sun | first4 = Haibai | last5 = Xing | first5 = Zhiheng |last6 = Li | first6 = Li | last7 = Chen | first7 = Huaiyong | url = https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(23)00061-5/fulltext | date = 2023-04-01 | journal = eClinicalMedicine | volume = 58 | doi = 10.1016/j.eclinm.2023.101884}}</ref> followed up SARS survivors 18 years later and found they still suffered from physical fatigue, osteoporosis, and necrosis of the femoral head nearly two decades after discharge.

{{See also|1=Postviral fatigue syndrome|2=Postviral fatigue syndrome|3=Long COVID|4=Long COVID|5=Fibromyalgia|6=Fibromyalgia}}

==ME/CFS==
Lam et al. (2009) conducted a large long-term follow up of people needing hospital treatment for SARS in [[Hong Kong]], and found that 40% reported [[chronic fatigue]], and 27% of them and met the CDC's criteria for [[chronic fatigue syndrome]], sometimes called ME/CFS, one year after recovery from SARS.<ref name="Lam2009" /> This study found that the use of [[corticosteroid]]s (steroids) in treating SARS was not associated with an increased likelihood of chronic fatigue, and the high rates of [[mental illness|psychiatric problems]] did not explain high rates of chronic fatigue.<ref name="Lam2009" />

Moldofsky et al. (2011) assessed 21 survivors of SARS from Toronto, [[Canada]], who remained too ill to return to work, stating that ''chronic post-SARS'' was similar to [[fibromyalgia]].<ref name="Moldofsky2011" />
{{See also|1=myalgic encephalomyelitis|2=Myalgic Encephalomyelitis (ME)|3=chronic fatigue syndrome|4=Chronic Fatigue Syndrome (CFS)}}

==Notable studies==
*2011, Chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep in chronic post-SARS syndrome; a case-controlled study<ref name="Moldofsky2011">{{Cite journal | last = Moldofsky | first = Harvey | last2 = Patcai | first2 = John | date = 2011-03-24 | title = Chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep in chronic post-SARS syndrome; a case-controlled study|url=https://doi.org/10.1186/1471-2377-11-37|journal=BMC Neurology|volume=11|issue=1|pages=37|doi=10.1186/1471-2377-11-37|issn=1471-2377|pmc = 3071317|pmid=21435231}}</ref> - [https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-11-37 (Full text)]
*2010, Severe Acute Respiratory Syndrome and Coronavirus - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7127710/ (Full text)]
*2004, Pulmonary function and exercise capacity in survivors of severe acute respiratory syndrome [https://erj.ersjournals.com/content/erj/24/3/436.full.pdf (Full text)]
*2009, Mental Morbidities and Chronic Fatigue in Severe Acute Respiratory Syndrome Survivors: Long-term Follow-up<ref name="Lam2009">{{Cite journal | last = Lam | first = Marco Ho-Bun | last2 = Wing | first2 = Yun-Kwok | last3 = Yu | first3 = Mandy Wai-Man | last4 = Leung | first4 = Chi-Ming| last5 = Ma | first5 = Ronald C.W. | last6 = Kong | first6 = Alice P.S. | last7 = So | first7 = W.Y. | last8 = Fong | first8 = Samson Yat-Yuk | last9 = Lam | first9 = Siu-Ping | date = 2009-12-14 | title = Mental Morbidities and Chronic Fatigue in Severe Acute Respiratory Syndrome Survivors: Long-term Follow-up | url =https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/415378|journal=Archives of Internal Medicine|language=en|volume=169|issue=22|pages=2142–2147|doi=10.1001/archinternmed.2009.384|issn=0003-9926}}</ref> - [https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/415378 (Full text)]
*2003, Consensus document on the epidemiology of severe acute respiratory syndrome (SARS)<ref>{{Cite web|url=https://apps.who.int/iris/bitstream/handle/10665/70863/WHO_CDS_CSR_GAR_2003.11_eng.pdf | title = Consensus document on the epidemiology of severe acute respiratory syndrome (SARS). No. WHO/CDS/CSR/GAR/2003.11. | last=World Health Organization | first= | authorlink = World Health Organization | date = 2003 | website = World Health Organization|archive-url=|archive-date=|url-status=|access-date=}}</ref> - [https://apps.who.int/iris/bitstream/handle/10665/70863/WHO_CDS_CSR_GAR_2003.11_eng.pdf (Full text)]

==Learn more==
* [https://www.youtube.com/watch?time_continue=16&v=lkU1_Hce6WM&feature=emb_title SARS: The Outbreak (2003)] YouTube

==See also==
*[[Severe acute respiratory syndrome coronavirus]]
*[[2003 Hong Kong outbreak]]
*[[COVID-19]] (Coronavirus disease 19)
*[[Postviral fatigue syndrome]]
*[[Chronic fatigue syndrome]]
*[[Fibromyalgia]]

==References==
{{reflist}}

[[Category:Infectious diseases]]
[[Category:Triggers and risk factors]]

Long COVID

2025-10-15T20:38:44Z

Yakov:/* ME/CFS */ Rearranged text for clarity. Put most important novel findings at the top

[[File:Long-COVID.jpg|alt=Long COVID logo with Coronavirus icon |thumb]]
'''Long COVID''', '''long tail covid''', '''Post-Acute Sequelae of COVID-19''' '''(PASC)''', '''post-acute COVID-19''' and '''ongoing COVID''' are terms used to describe a group of long term health problems that are found in a significant minority of people who developed [[COVID-19]] and remain ill a number of weeks or months later.<ref name="Navabi2020">{{Cite journal | title = Long covid: How to define it and how to manage it|last = Nabavi|first = Nikki|url=https://www.bmj.com/content/370/bmj.m3489 | date = Sep 7, 2020|journal=The BMJ|volume=370|pages=bmj.m3489}}</ref><ref name="BMJ11Aug2020" /><ref name="long-haulers-redefining">{{Cite news | url=https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/ | title = Long-Haulers Are Redefining COVID-19|last = Yong|first = Ed | date = Aug 19, 2020|work=The Atlantic|access-date=2020-08-21|archive-url=|archive-date=|url-status=|issn=1072-7825|quote=}}</ref><ref name="NIHR.ac.uk15Oct2020">{{Cite web|url=https://www.nihr.ac.uk/news/living-with-covid-nihr-publishes-dynamic-themed-review-into-ongoing-covid/25891 | title = Living with COVID: NIHR publishes dynamic themed review into ‘ongoing COVID’|last = National Institute for Health Research|first = | authorlink = | date = | website = [[National Institute for Health Research]] |archive-url=|archive-date=|url-status=|access-date=2020-10-15}}</ref> About half of people with Long COVID have [[ME/CFS]]<ref name="Dehlia2025">{{Cite journal | title = The persistence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) after SARS-CoV-2 infection: A systematic review and meta-analysis | last1 = Dehlia | first1 = Ankush | last2 = Guthridge | first2 = Mark A. | url = https://www.sciencedirect.com/science/article/pii/S0163445324002317 | year = 2025 | journal = Journal of Infection | volume = 89 | pages = 106297 | number = 6 | doi = 10.1016/j.jinf.2024.106297 | issn = 0163-4453}}</ref>.

The name '''Long COVID''' was coined by patient [[Elisa Perego]] in May 2020,<ref name="BMJ1Oct2020" /> and in February 2021 the [[Centers for Disease Control|CDC]] introduced the alternative name '''Post-Acute Sequelae of COVID-19''' (PASC).<ref name="PASC-blog">{{Cite web|url=https://directorsblog.nih.gov/tag/post-acute-sequelae-of-covid-19| title =
Trying to Make Sense of Long COVID Syndrome
| date = Jan 19, 2021|first = Francis|last = Collins | authorlink = Francis Collins |access-date = Mar 1, 2021}}</ref>

In February 2020, the [[World Health Organization]] stated that the expected recovery time from [[COVID-19]] was 2 weeks for mild cases, and between three and six weeks for severe cases;<ref name="WHOFeb2020">{{Cite web|url=https://www.who.int/dg/speeches/detail/who-director-general-s-opening-remarks-at-the-media-briefing-on-covid-19---24-february-2020 | title = WHO Director-General's opening remarks at the media briefing on COVID-19|last = World Health Organization | first = | authorlink = World Health Organization | date = Feb 24, 2020 | website = [[World Health Organization]]|language=en|archive-url=|archive-date=|url-status=|access-date=2020-09-24}}</ref> follow-up studies then identified a significant number of COVID-19 patients had remained ill much longer than this: those with long COVID.<ref name="Navabi2020" /><ref name="BMJ11Aug2020" />

A similar phenomenon to long COVID occurred after the 2003 outbreak of the similar SARS coronavirus, which lead to a [[Severe acute respiratory syndrome#post-SARS|post-SARS syndrome]] being proposed that included chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep. Another study found a subgroup SARS survivors developed [[chronic fatigue syndrome]] immediately after SARS.<ref name="Moldofsky2011">{{Cite journal | last = Moldofsky|first = Harvey | last2 = Patcai | first2 = John | date = 2011-03-24 | title = Chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep in chronic post-SARS syndrome; a case-controlled study|url=https://doi.org/10.1186/1471-2377-11-37|journal=BMC Neurology|volume=11|issue=1 | pages = 37|doi=10.1186/1471-2377-11-37|issn=1471-2377|pmc = 3071317|pmid=21435231}}</ref>
<ref name="Lam2009">{{Cite journal|last = Lam|first = Marco Ho-Bun | last2 = Wing | first2 = Yun-Kwok | last3 = Yu | first3 = Mandy Wai-Man | last4 = Leung | first4 = Chi-Ming | last5 = Ma | first5 = Ronald C.W. | last6 = Kong | first6 = Alice P.S. | last7 = So | first7 = W.Y. | last8 = Fong | first8 = Samson Yat-Yuk | last9 = Lam | first9 = Siu-Ping | date = 2009-12-14 | title = Mental Morbidities and Chronic Fatigue in Severe Acute Respiratory Syndrome Survivors: Long-term Follow-up | url = https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/415378|journal=Archives of Internal Medicine|language=en|volume=169|issue=22|pages=2142–2147|doi=10.1001/archinternmed.2009.384|issn=0003-9926}}</ref>

==Long-haulers==
A "long-hauler" is someone with long COVID, meaning someone who became ill with confirmed or suspected [[COVID-19]], who has remained ill with long-term symptoms many weeks or months later after first becoming ill.<ref name="long-haulers-redefining" /><ref name="BMJ1Oct2020">{{Cite web|url=https://blogs.bmj.com/bmj/2020/10/01/why-we-need-to-keep-using-the-patient-made-term-long-covid/ | title = Why we need to keep using the patient made term “Long Covid” | date = 2020-10-01 | last = Perego|first =Elisa | authorlink = Elisa Perego | last2 =Callard | first2 = Felicity | authorlink2 = Felicity Callard | last3 = Stras | first3 = Laurie | authorlink3 = Laurie Stras | last4 = Melville-Jóhannesson | first4 = Barbara | authorlink4 = Barbara Melville-Jóhannesson | last5 = Pope | first5 = Rachel | authorlink5 = Rachel Pope | last6 = Alwan | first6 =
Nisreen A | authorlink6 = Nisreen Alwan|website=The BMJ|language=en-US|access-date=2020-10-11}}</ref>

==What is long COVID==
[[File:Long-COVID-1in10.jpg|alt=Long COVID poster - 1 in 10 people with COVID-19 may develop long COVID|thumb]]
Long COVID appears to be a multisystem disease, and may occur after any severity of COVID-19, including after relatively mild cases.<ref name="BMJ11Aug2020" /><ref name="BMJ1Oct2020" />

=== Signs and symptoms ===
Patient surveys have reported that the following symptoms commonly occur in long COVID.
*[[Fatigue]], which may be extreme (profound)
*[[myalgia|Muscle pain]] or body aches
*[[dyspnea|Breathlessness]]
*[[Concentration problems]]
*Inability to [[exercise]]/[[exercise intolerance]]
*[[Headache]]
*[[Insomnia]] or [[sleep dysfunction|problems sleeping]]
*Heavy chest, a feeling of pressure on the chest, or chest pain
Other reported symptoms include:
*[[Anxiety]]
*[[Paresis|Muscle weakness]]
*[[Memory problems]]
*[[Skin rash]]
*[[Sore throat]] and [[dysphagia|difficulty swallowing]]
*[[Heart palpitation]]s
*[[Fever]]
*[[Diarrhea]]
*[[Dizziness]]
*The sensation of [[pins and needles]]
*[[Cough]]
*[[Low-grade fever]]
*[[Dysgeusia|Loss of sense of taste]] and [[anosmia|loss of sense of smell]]
*[[Joint pain]]
*[[new allergies and intolerances|New onset allergies]], which may lead to [[anaphylaxis|anaphylactic shock]] in some cases<ref name="Davis2021a" />
*New onset [[diabetes]]<ref name="Rubino2020">{{Cite journal|last = Rubino|first = Francesco | last2 = Amiel | first2 = Stephanie A. | last3 = Zimmet | first3 = Paul | last4 = Alberti | first4 = George | last5 = Bornstein | first5 = Stefan | last6 = Eckel | first6 = Robert H. | last7 = Mingrone | first7 = Geltrude | last8 = Boehm | first8 = Bernhard | last9 = Cooper | first9 = Mark E. | date = 2020-08-20 | title = New-Onset Diabetes in Covid-19|url=https://doi.org/10.1056/NEJMc2018688|journal=New England Journal of Medicine|volume=383|issue=8 | pages = 789–790|doi=10.1056/NEJMc2018688|issn=0028-4793|pmc = 7304415|pmid=32530585}}</ref>
*New onset [[Hypertension|high blood pressure]]<ref name="Navabi2020" /><ref name="Lambert25Jul2020" /><ref name="NHSlongSep2020">{{Cite web|url=https://www.gov.uk/government/publications/covid-19-long-term-health-effects/covid-19-long-term-health-effects | title = COVID-19 Long Term Health Effects|last = National Health Service | first = | authorlink = National Health Service | date = Sep 7, 2020 | website = |archive-url=|archive-date=|url-status=|access-date=}}</ref><ref name="Yellin2020" />
*New [[Menstrual problems in ME/CFS|menstrual problems]]<ref name="Davis2021" />

{{Quote box|“A very common feature is the relapsing, remitting nature of the illness, where you feel as though you’ve recovered, then it hits you back|source=Dr. Nisreen Alwan, BMJ, Sep 2020}}

===World Health Organization Long COVID diagnostic criteria ===
Post COVID-19 condition ("Long COVID") definition
*history of probable or confirmed SARS-CoV-2 infection
*symptom(s) last 2 months from the start of COVID-19 (or 3 months for asymptomatic COVID-19)
*symptom(s) can't be explained by an alternative diagnosis
*no minimum number of symptoms
*symptom(s) generally affect day to day functioning
*new onset of symptoms - symptoms begin after recovery from COVID-19 or begin at the start of COVID-19 and persist
*symptoms can fluctuate or improve then relapse over time

Common symptoms:
*[[fatigue]]
*[[shortness of breath]]
*[[cognitive dysfunction]] but there are others
Other symptoms:
*[[abdominal pain]], [[menstrual and period problems]], [[parosmia|altered smell]]/[[dysgeusia|taste]], [[anxiety]] , [[blurred vision]], [[chest pain]], [[cognitive dysfunction]] (e.g. brain fog), [[cough]], [[depression]], [[dizziness]], [[fatigue]], intermittent [[fever]], gastrointestinal issues ([[diarrhoea]], [[constipation]], [[acid reflux]]), [[headache]], [[memory problems|memory issues]], [[arthralgia|joint pain]], [[myalgia|muscle pain]], [[muscle spasm]]s, [[nerve pain|neuralgias]] (nerve pain), [[new allergies and intolerances|new onset allergies]], [[paresthesia|pins and needles sensations]], [[post-exertional malaise]], [[dyspnea|shortness of breath]], [[:category:sleep disorders|sleep disorder]]s, [[heart palpitations|tachycardia/palpitations]], [[tinnitus|tinnitus and other hearing issues]]
 Notes:
*Children - separate criteria may be needed
*Clusters - clusters of 2 or more related symptoms may occur together<ref name="WHO-longcovid-criteria" />

{{See also|World Health Organization Long COVID diagnostic criteria}}

=== Four different syndromes ===
A recent review suggested that long COVID may actually be four differing syndromes:
* [[Post-COVID-19 illness#pics|Post-Intensive Care Syndrome]]
* [[Postviral fatigue syndrome|Postviral Fatigue Syndrome]] (ME/CFS)
* [[Post-Acute Sequelae of COVID-19|Long Term COVID Syndrome]]
* Permanent organ damage
Patients with long COVID may have several syndromes at once.<ref name="NIHR15Oct2020" />

== COVID-19 testing ==
While some people with long COVID did have a positive test result for COVID-19, others were denied tests due to the limited availability of tests at the time, or they tested negative but were found to have clear evidence of COVID-19 from blood count tests or chest X-rays.<ref name="NIHR15Oct2020">{{Cite web|url=https://evidence.nihr.ac.uk/themedreview/living-with-covid19 | title = Living with covid-19. A dynamic review of the evidence around ongoing covid-19 symptoms (often called long covid). | last = NIHR|first = | authorlink = | date = October 2020 | website = evidence.nihr.ac.uk|language=en-GB|archive-url=|archive-date=|url-status=|access-date=2020-10-15}}</ref><ref name="Kingstone2020" /> Some people with Long COVID have described never having a cough or fever at the start of their illness, but developed these symptoms later. Long COVID diagnosis does not depend on a previous positive test.<ref name="NIHR15Oct2020" /><ref name="Kingstone2020" />

==Clinical findings ==

There is no blood test or diagnostic biomarker to identify patients with long COVID. A study of UK patients by Dennis et al (2020) found that just over 10% of long COVID patients had abnormal findings on the standard tests and did not find an association between standard test results and degree of organ damage or long COVID severity.<ref name="Dennis2020" /> The same study used MRI scans combined with patient questionnaires to assess organ damage, finding that multi-organ impairment was common in people with long COVID, despite the fact that 80% had not been hospitalized for [[COVID-19]], the average patient age was forty-four years old, and rates of pre-existing conditions were also low.<ref name="Dennis2020" />

==Research findings ==
{{Main article|page_name=Long COVID pathophysiology}}

Surveys of data collected and published by long haulers using social media were the first evidence of what symptoms and health problems were caused by long COVID.<ref name="bodypoliticMay2020" /> Later academic studies confirmed many of the initial long hauler survey findings, although many only involved patients discharged from hospital,<ref name="Puntmann2020" /> patients who had been able to access early testing and tested positive, or patients who had sought medical care in a particular location.<ref name="Arnold2020b" /> People with mild COVID-19 symptoms, leaving people denied testing and those who may have had false negative test results and people who tested positive but were asymptomatic underrepresented in long COVID research.<ref name="bodypoliticMay2020" />

==Treatment==

===Pacing===
Pacing is a method of activity management which aims to adapt everday activities in order to avoid relapses or increased symptoms.
{{See also|Pacing}}

===Exercise therapy ===
ME/CFS patient groups have raised concerns about the use of [[graded exercise therapy]] (GET) in long COVID patients and a similar warning has been issued by [[NICE]] in the [[United Kingdom|UK]].<ref name="GETcovidForwardME" /> Graded exercise therapy, which is sometimes incorrectly referred to as "activity management" involves patients initially reducing their activity levels to a level that prevents regular crashes, and then typically increasing activity by 10% each week regardless of any increased symptoms or worsening illness. In graded exercise patients are told to ignore deterioration or increased symptoms and "push through" them.

====Theory and evidence ====
In graded exercise therapy patients are told that their symptoms are caused only by [[deconditioning|inactivity]] and other "bad habits" rather than an underlying illness. These assumptions have very weak evidence, and significant evidence exists of underlying illness in ME/CFS; there is a lack of research about exercise therapy for long COVID illness<ref name="Navabi2020" /> but some symptoms are inconsistent with this "deconditioning" assumption and some research has found physical abnormalities in some patients weeks or months after infection. Surveys of ME/CFS patients have consistently shown that large numbers of patients deteriorate as a result of graded exercise therapy, and a significant number become severely ill and never return to the level of functioning they had before the treatment.

==ME/CFS==
About half of people with Long COVID fulfilled the diagnostic criteria for [[ME/CFS]] according to a 2025 systematic review and meta-analysis<ref name="Dehlia2025" /> which looked at all the available evidence. Most included studies used the [[Canadian Consensus Criteria]] to diagnose, a few also used the [[Systemic Exertion Intolerance Disease|IoM]] criteria, [[International Consensus Criteria]] and [[DePaul Symptom Questionnaire]].

About 4% of Covid infections give people [[Myalgic Encephalomyelitis]] according to a 2025 longitudinal observational cohort study<ref name=":0">{{Cite journal|title=Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER-Adult Study|date=April 2025|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11968624/|journal=Journal of General Internal Medicine|volume=40|issue=5|pages=1085–1094|last=Vernon|first=Suzanne D.|last2=Zheng|first2=Tianyu|last3=Do|first3=Hyungrok|last4=Marconi|first4=Vincent C.|last5=Jason|first5=Leonard A.|last6=Singer|first6=Nora G.|last7=Natelson|first7=Benjamin H.|last8=Sherif|first8=Zaki A.|last9=Bonilla|first9=Hector Fabio|last10=Taylor|first10=Emily|last11=Mullington|first11=Janet M.|doi=10.1007/s11606-024-09290-9|pmid=39804551|issn=0884-8734}}</ref> which followed 11,785 adults who'd had a SARS-COV-2 infection and 1,439 uninfected adults. The study found a SARS-COV-2 infection is particularly likely to trigger [[ME/CFS]] symptoms. [[Post-exertional malaise]] was the most common ME/CFS symptom after COVID infection. Nearly 90% of people with post-infection ME/CFS also met the criteria for long COVID. The findings:

* 4.5% of infected adults fully met [[Systemic Exertion Intolerance Disease|Institute of Medicine]] (IOM) clinical diagnostic criteria for ME/CFS.
** 0.6% of uninfected adults fully met IOM criteria.
* 39.8% of infected adults had at least one ME/CFS symptom but didn't meet the full IOM criteria.
** 16.1% of uninfected adults partially met IOM criteria.

[[Myalgic Encephalomyelitis]] (ME) often has its onset immediately after a viral or bacterial infection.<ref name="ICC2011primer">{{citation|title=Myalgic encephalomyelitis: Adult & Paediatric: International Consensus Primer for Medical Practitioners|date=2012|url=http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf|last1=Carruthers|first1=BM|authorlink1=Bruce Carruthers|isbn=978-0-9739335-3-6|last2=van de Sande|first2=MI|authorlink2=Marjorie van de Sande|last3=De Meirleir|first3=KL|authorlink3=Kenny de Meirleir|last4=Klimas|first4=NG|authorlink4=Nancy Klimas|last5=Broderick|first5=G|authorlink5=Gordon Broderick|last6=Mitchell|first6=T|authorlink6=Terry Mitchell|last7=Staines|first7=D|authorlink7=Donald Staines|last8=Powles|first8=ACP|authorlink8=A C Peter Powles|last9=Speight|first9=N|authorlink9=Nigel Speight|last10=Vallings|first10=R|authorlink10=Rosamund Vallings|last11=Bateman|first11=L|authorlink11=Lucinda Bateman|last12=Bell|first12=DS|authorlink12=David Bell|last13=Carlo-Stella|first13=N|authorlink13=Nicoletta Carlo-Stella|last14=Chia|first14=J|authorlink14=John Chia|last15=Darragh|first15=A|authorlink15=Austin Darragh|last16=Gerken|first16=A|authorlink16=Anne Gerken|last17=Jo|first17=D|authorlink17=Daehyun Jo|last18=Lewis|first18=DP|authorlink18=Donald Lewis|last19=Light|first19=AR|authorlink19=Alan Light|last20=Light|first20=KC|authorlink20=Kathleen Light|last21=Marshall-Gradisnik|first21=S|authorlink21=Sonya Marshall-Gradisnik|last22=McLaren-Howard|first22=J|authorlink22=John McLaren-Howard|last23=Mena|first23=I|authorlink23=Ismael Mena|last24=Miwa|first24=K|authorlink24=Kunihisa Miwa|last25=Murovska|first25=M|authorlink25=Modra Murovska|last26=Stevens|first26=SR|authorlink26=Staci Stevens}}</ref> In fact, one of its previous names was [[postviral fatigue syndrome]]. ME has been a sequela of over [[Epidemic myalgic encephalomyelitis|one hundred outbreaks]], in addition to sporadic infections. ME/CFS is not normally diagnosed until symptoms have persisted for six months or more, and tests must be run to exclude other possible causes of the symptoms.<ref name="SEID2015">{{Citation|last = Institute of Medicine | authorlink = Institute of Medicine | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness|location=Washington, DC|publisher=The National Academies Press | date = 2015 | url=https://www.ncbi.nlm.nih.gov/books/NBK284902/}}</ref> Some contagious diseases including [[Epstein-Barr virus]], certain [[enterovirus]]es,<ref name="ICC2011primer" /> and the [[Severe acute respiratory syndrome|SARS]] coronavirus,<ref name="Moldofsky2011" /> have caused outbreaks of ME/CFS.

According to [[Infectious disease|infectious diseases]] and [[Immune system|immunology]] researcher, [[Sonya Marshall-Gradisnik]], there appeared to be a correlation between the illnesses long COVID and [[ME/CFS]].<blockquote>"The symptom overlap between [[ME/CFS]] and long-COVID is quite astounding," Professor Marshall-Gradisnik said. Those symptoms can be [[fatigue]], they have [[pain]], [[joint pain]], [[Sleep dysfunction|sleep disturbances]], [[headaches]], they have [[Cardiac dysfunctions|cardiac]] changes. Notably, they've got [[brain fog]] and [[Cognitive dysfunction|cognitive]] issues with [[Memory problems|memory]], [and] [[Word-finding problems|word choice]] becomes a problem."<ref>{{Cite news | url=https://www.abc.net.au/news/2022-03-18/long-covid-and-chronic-fatigue-links/100916990 | title = 'Symptom overlap is quite astounding': Researchers probe links between long-COVID and chronic fatigue | date = 2022-03-17|work=ABC News|access-date=2022-06-09|language=en-AU}}</ref></blockquote>

==Patient surveys ==
'''Not peer reviewed'''
* May 2020, [https://patientresearchcovid19.com/research/report-1/ What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team]<ref name="bodypoliticMay2020">{{Cite web|url=https://docs.google.com/document/u/0/d/1KmLkOArlJem-PArnBMbSp-S_E3OozD47UzvRG4qM5Yk/mobilebasic | title = What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team | date = May 11, 2020|vauthors=Assaf G, Davis H, McCorkell L, Wei H, O'Neil B, Akrami A, Low R, Mercier J, A A, L T, C A, S M, N L, H N, D JD, S}}</ref> - by [[Body Politic|Body Politic and Patient Led Research Collaborative]]
::Data collected: Apr 21 - May 2 2020. Respondents: 640

* Jul 2020, [https://static1.squarespace.com/static/5e8b5f63562c031c16e36a93/t/5f459ef7798e8b6037fa6c57/1598398215120/2020+Survivor+Corps+COVID-19+%27Long+Hauler%27+Symptoms+Survey+Report+%28revised+July+25.4%29.pdf COVID-19 “Long Hauler” Symptoms Survey Report]<ref name="Lambert25Jul2020">{{Cite web|url=https://static1.squarespace.com/static/5e8b5f63562c031c16e36a93/t/5f459ef7798e8b6037fa6c57/1598398215120/2020+Survivor+Corps+COVID-19+%27Long+Hauler%27+Symptoms+Survey+Report+%28revised+July+25.4%29.pdf | title=COVID-19 “Long Hauler” Symptoms Survey Report|last = Lambert | first = Natalie J | author-link = Natalie Lambert | last2 = Survivor Corps | authorlink2 = Survivor Corps|publisher=Indiana University School of Medicine | date = Jul 2020}}</ref> - with Survivor Corps
::Data collected: Jul 25, 2020. Respondents: 1,567+
::
:* Dec 2020, [https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v2 Charactering Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact] - by [https://patientresearchcovid19.com/ Body Politic and Patient Led Research Collaborative]
:** Respondents: 3,762+

==Notable studies==
*Jul 24, 2020, Outcomes of Cardiovascular Magnetic Resonance Imaging in Patients Recently Recovered From Coronavirus Disease 2019 (COVID-19)<ref name="Puntmann2020">{{Cite journal | last = Puntmann | first = Valentina O. | last2 = Carerj | first2 = M. Ludovica | last3 = Wieters | first3 = Imke | last4 = Fahim | first4 = Masia | last5 = Arendt | first5 = Christophe | last6 = Hoffmann | first6 = Jedrzej | last7 = Shchendrygina | first7 = Anastasia | last8 = Escher | first8 = Felicitas | last9 = Vasa-Nicotera | first9 = Mariuca | date = 2020-07-27 | title = Outcomes of Cardiovascular Magnetic Resonance Imaging in Patients Recently Recovered From Coronavirus Disease 2019 (COVID-19)|url=https://jamanetwork.com/journals/jamacardiology/fullarticle/2768916|journal=JAMA Cardiology|language=en|doi=10.1001/jamacardio.2020.3557|issn=2380-6583}}</ref> - [https://jamanetwork.com/journals/jamacardiology/fullarticle/2768916 (Full text)]
*Aug 11, 2020, Management of post-acute covid-19 in primary care<ref name="BMJ11Aug2020">{{cite journal | title = Management of post-acute covid-19 in primary care|last = Greenhalgh|first = Trisha | authorlink = Trisha Greenhalgh | first2 = Matthew | last2 = Knight | authorlink2 = Matthew Knight | authorlink3 = Christine A'Court | first3 = Christine | last3 = A'Court | first4 = Maria | last4 = Buxton | first5 = Laiba | last5 = Husain|journal=The BMJ | date = Aug 11, 2020|volume=370|doi=10.1136/bmj.m3026|pages=m3026 | url = https://doi.org/10.1136/bmj.m3026}}</ref> - [https://doi.org/10.1136/bmj.m3026 (Full text)]
*Aug 20, 2020, New-Onset Diabetes in Covid-19<ref name="Rubino2020" /> - [https://www.nejm.org/doi/full/10.1056/NEJMc2018688 (Full text)]
*Oct 1, 2020, Long-term consequences of COVID-19: research needs<ref name="Yellin2020">{{Cite journal|last = Yelin | first = Dana | last2 = Wirtheim | first2 = Eytan | last3 = Vetter | first3 = Pauline | last4 = Kalil | first4 = Andre C. | last5 = Bruchfeld | first5 = Judith | last6 = Runold | first6 = Michael | last7 = Guaraldi | first7 = Giovanni | last8 = Mussini | first8 = Cristina | last9 = Gudiol | first9 = Carlota | date = 2020-10-01 | title = Long-term consequences of COVID-19: research needs|url=https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(20)30701-5/abstract|journal=The Lancet Infectious Diseases|language=English|volume=20|issue=10|pages=1115–1117|doi=10.1016/S1473-3099(20)30701-5|issn=1473-3099|pmid=32888409}}</ref> - [https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(20)30701-5/fulltext (Full text)]
*Oct 14, 2020, Finding the 'right' GP: a qualitative study of the experiences of people with long-COVID<ref name="Kingstone2020">{{Cite journal | last = Kingstone | first = Tom | authorlink = | last2 = Taylor | first2 = Anna K. | authorlink2 = | last3 = O'Donnell | first3 = Catherine A. | authorlink3 = | last4 = Atherton | first4 = Helen | authorlink4 = | last5 = Blane | first5 = David N. | authorlink5 = | last6 = Chew-Graham | first6 = Carolyn A. | authorlink6 = Carolyn Chew-Graham | date = 2020-10-14 | title = Finding the 'right' GP: a qualitative study of the experiences of people with long-COVID|url=https://bjgpopen.org/content/early/2020/10/12/bjgpopen20X101143|journal=BJGP Open|language=en|volume=|issue=|pages=|doi=10.3399/bjgpopen20X101143|issn=2398-3795|pmc=|pmid=33051223|access-date=|quote=|via=}}</ref> - [https://bjgpopen.org/content/bjgpoa/early/2020/10/12/bjgpopen20X101143.full.pdf (Full text)]
*Oct 16, 2020, Multi-organ impairment in low-risk individuals with long COVID<ref name="Dennis2020">{{Cite journal|last = Dennis | first = Andrea | authorlink = | last2 = Wamil | first2 = Malgorzata | authorlink2 = | last3 = Kapur | first3 = Sandeep | authorlink3 = | last4 = Alberts | first4 = Johann | authorlink4 = | last5 = Badley | first5 = Andrew D. | authorlink5 = | last6 = Decker | first6 = Gustav Anton | authorlink6 = | last7 = Rizza | first7 = Stacey A. | last8 = Banerjee | first8 = Rajarshi | last9 = Banerjee | first9 = Amitava | authorlink9 = Amitava Banerjee | date = 2020-10-16 | title = Multi-organ impairment in low-risk individuals with long COVID|url=https://www.medrxiv.org/content/10.1101/2020.10.14.20212555v1|journal=medRxiv|language=en|volume=|issue=|pages=2020.10.14.20212555|doi=10.1101/2020.10.14.20212555|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://doi.org/10.1101/2020.10.14.20212555 (Full text)]
*Oct 21, 2020, Attributes and predictors of Long-COVID: analysis of COVID cases and their symptoms collected by the Covid Symptoms Study App<ref name="Sudre2020a">{{Cite journal|last = Sudre | first = Carole H. | authorlink = | last2 = Murray | first2 = Benjamin | authorlink2 = | last3 = Varsavsky | first3 = Thomas | authorlink3 = | last4 = Graham | first4 = Mark S. | authorlink4 = | last5 = Penfold | first5 = Rose S. | authorlink5 = | last6 = Bowyer | first6 = Ruth C. | authorlink6 = | last7 = Pujol | first7 = Joan Capdevila | last8 = Klaser | first8 = Kerstin | last9 = Antonelli | first9 = Michela | date = 2020-10-19|others= | title = Attributes and predictors of Long-COVID: analysis of COVID cases and their symptoms collected by the Covid Symptoms Study App | url = https://www.medrxiv.org/content/10.1101/2020.10.19.20214494v1|journal=medRxiv|language=en|volume=|issue=|pages=2020.10.19.20214494|doi=10.1101/2020.10.19.20214494|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://www.medrxiv.org/content/10.1101/2020.10.19.20214494v1.full-text (Full text)]
*Dec 2020 (pre-print) / Jul 15, 2021, Characterizing long COVID in an international cohort: 7 months of symptoms and their impact<ref name="Davis2021a">{{Cite journal|last = Davis | first = Hannah E. | authorlink = Hannah Davis | last2 = Assaf | first2 = Gina S. | last3 = McCorkell | first3 = Lisa | last4 = Wei | first4 = Hannah | last5 = Low | first5 = Ryan J. | last6 = Re'em | first6 = Yochai | last7 = Redfield | first7 = Signe | last8 = Austin | first8 = Jared P. | last9 = Akrami | first9 = Athena | date = 2021-07-15 | title = Characterizing long COVID in an international cohort: 7 months of symptoms and their impact|url=https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00299-6/abstract|journal=EClinicalMedicine|language=English|volume=38|issue=|pages=101019|doi=10.1016/j.eclinm.2021.101019|pmc=PMC8280690|pmid=34308300|issn=2589-5370}}</ref> - [https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00299-6/abstract (Abstract)]
*Dec 2020, Long COVID-19: Challenges in the diagnosis and proposed diagnostic criteria<ref name="PMC7737559">{{Cite journal|last = Raveendran | first = A.V. | date = 2021 | title=Long COVID-19: Challenges in the diagnosis and proposed diagnostic criteria|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7737559/|journal=Diabetes & Metabolic Syndrome|volume=15|issue=1|pages=145–146|doi=10.1016/j.dsx.2020.12.025|issn=1871-4021|pmc=7737559|pmid=33341598}}</ref> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7737559/ (Full text)]
*Dec 20, 2020, Patient outcomes after hospitalisation with COVID-19 and implications for follow-up; results from a prospective UK cohort<ref name="Arnold2020b">{{Cite journal | last = Arnold | first = David T. | authorlink = David Arnold | last2 = Hamilton | first2 = Fergus W. | last3 = Milne | first3 = Alice | last4 = Morley | first4 = Anna J. | last5 = Viner | first5 = Jason | last6 = Attwood | first6 = Marie | last7 = Noel | first7 = Alan | last8 = Gunning | first8 = Samuel | last9 = Hatrick | first9 = Jessica | date = 2021-04-01 | title = Patient outcomes after hospitalisation with COVID-19 and implications for follow-up: results from a prospective UK cohort|url=https://thorax.bmj.com/content/76/4/399|journal=Thorax|language=en|volume=76|issue=4 | pages = 399–401|doi=10.1136/thoraxjnl-2020-216086|issn=0040-6376|pmid=33273026}}</ref> - [https://thorax.bmj.com/content/76/4/399 (Full text)] - from the DISCOVER project
*Jan 18, 2021, Will COVID-19 lead to myalgic encephalomyelitis/chronic fatigue syndrome?<ref name="Komaroff2021a">{{Cite journal | last = Komaroff|first = Anthony L. | authorlink = Anthony Komaroff | last2 = Bateman | first2 = Lucinda | authorlink2 = Lucinda Bateman | date = 2021 | title=Will COVID-19 Lead to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?|url=https://www.frontiersin.org/articles/10.3389/fmed.2020.606824/full?s=03|journal=Frontiers in Medicine|language=English|volume=|issue=|pages=|doi=10.3389/fmed.2020.606824|issn=2296-858X|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://www.frontiersin.org/articles/10.3389/fmed.2020.606824/full?s=03 (Full text)]
*Mar 27, 2021, COVID-19 Survivors’ Reports of the Timing, Duration, and Health Impacts of Post-Acute Sequelae of SARS-CoV-2 (PASC) Infection<ref name="Lambert2021a">{{Cite journal|last = Lambert | first = Natalie | authorlink = Natalie Lambert | last2 = Corps | first2 = Survivor | authorlink2 = Survivor Corps | last3 = El-Azab | first3 = Sarah A. | authorlink3 = | last4 = Ramrakhiani | first4 = Nathan S. | authorlink4 = | last5 = Barisano | first5 = Anthony | authorlink5 = | last6 = Yu | first6 = Lu | authorlink6 = | last7 = Taylor | first7 = Kaitlyn | last8 = Esperanca | first8 = Alvaro | last9 = Downs | first9 = Charles A. | date = 2021-03-27 | title = COVID-19 Survivors’ Reports of the Timing, Duration, and Health Impacts of Post-Acute Sequelae of SARS-CoV-2 (PASC) Infection | url = https://www.medrxiv.org/content/10.1101/2021.03.22.21254026v2|journal=medRxiv|language=en|volume=|issue=|pages=2021.03.22.21254026|doi=10.1101/2021.03.22.21254026|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://doi.org/10.1101/2021.03.22.21254026 (Full text)]
*May 11, 2021, Mayo Clinic Proceedings: Post COVID-19 Syndrome (Long Haul Syndrome): Description of a Multidisciplinary Clinic at the Mayo Clinic and Characteristics of the Initial Patient Cohort<ref name="mayo2021a">{{Cite journal | last = Vanichkachorn | first = Greg | last2 = Newcomb | first2 = Richard | last3 = Cowl | first3 = Clayton T. | last4 = Murad | first4 = M. Hassan | last5 = Breeher | first5 = Laura | last6 = Miller | first6 = Sara | last7 = Trenary | first7 = Michael | last8 = Neveau | first8 = Daniel | last9 = Higgins | first9 = Steven | date = 2021-07-01 | title = Post–COVID-19 Syndrome (Long Haul Syndrome): Description of a Multidisciplinary Clinic at Mayo Clinic and Characteristics of the Initial Patient Cohort|url=https://www.mayoclinicproceedings.org/article/S0025-6196(21)00356-6/abstract|journal=Mayo Clinic Proceedings|language=English|volume=96|issue=7|pages=1782–1791|doi=10.1016/j.mayocp.2021.04.024|issn=0025-6196|pmid=34218857}}</ref> - [https://www.mayoclinicproceedings.org/article/S0025-6196(21)00356-6/abstract (Abstract)]
*Jun 7, 2021, Insights from ME/CFS May Help Unravel the Pathogenesis of Post-Acute COVID-19 Syndrome<ref name="Komaroff2021b">{{Cite journal | last = Komaroff|first = Anthony L. | authorlink = Anthony Komaroff | last2 = Lipkin | first2 = W. Ian | authorlink2 = Ian Lipkin | date = 2021-06-07 | title = Insights from myalgic encephalomyelitis/chronic fatigue syndrome may help unravel the pathogenesis of postacute COVID-19 syndrome|url=https://www.cell.com/trends/molecular-medicine/abstract/S1471-4914(21)00134-9|journal=Trends in Molecular Medicine|language=English|volume=|issue=|pages=|doi=10.1016/j.molmed.2021.06.002|issn=1471-4914|pmc=|pmid=34175230|access-date=|quote=|via=}}</ref> - [https://www.cell.com/trends/molecular-medicine/fulltext/S1471-4914(21)00134-9 (Full text)]
*Jun 23, 2021, Long COVID or Post-acute Sequelae of COVID-19 (PASC): An Overview of Biological Factors That May Contribute to Persistent Symptoms<ref name="Proal2021">{{Cite journal | last = Proal|first = Amy D. | authorlink = Amy Proal | last2 = VanElzakker | first2 = Michael B. | authorlink2 = Michael VanElzakker | date = 2021 | title=Long COVID or Post-acute Sequelae of COVID-19 (PASC): An Overview of Biological Factors That May Contribute to Persistent Symptoms|url=https://www.frontiersin.org/articles/10.3389/fmicb.2021.698169/full|journal=Frontiers in Microbiology|language=English|volume=|issue=|pages=|doi=10.3389/fmicb.2021.698169|issn=1664-302X|pmc=8260991|pmid=34248921|access-date=|quote=|via=}}</ref> - [https://doi.org/10.1101/2020.12.24.20248802 (Full text)]
*Oct 2021, A clinical case definition of post COVID-19 condition by a Delphi consensus<ref name="WHO-longcovid-criteria">{{citation | title = A clinical case definition of post COVID-19 condition by a Delphi consensus
| date =Oct 6, 2021 |publisher=[[World Health Organization]] | others = World Health Organization (WHO) clinical case definition working group on post COVID-19 condition | first1 = Joan B. | last1 = Soriano | first2 = Maya | last2 = Allan | first3 = Carine | last3 = Alsokhn | first4 = Nisreen A. | last4 = Alwan | authorlink4 = Nisreen Alwan | first5 = Lisa | last5 = Askie | first6 = Hannah E. | last6 = Davis | authorlink6 = Hannah Davis | first7 = Janet V. | last7 = Diaz | first8 = Tarun | last8 = Dua | first9 = Wouter | last9 = de Groote | first10 = Robert | last10 = Jakob | first11 = Marta | last11 = Lado | first12 = John | last12 = Marshall | first13 = Srin | last13 = Murthy | first14 = Jacobus | last14 = Preller | first15 = Pryanka | last15 = Relan | first16 = Nicoline | last16 = Schiess | first17 = Archana | last17 = Seahwag | ref = WHO reference number: WHO/2019-nCoV/Post_COVID-19_condition/Clinical_case_definition/2021.1 | url = https://www.who.int/publications-detail-redirect/WHO-2019-nCoV-Post_COVID-19_condition-Clinical_case_definition-2021.1}}</ref> [https://www.who.int/publications-detail-redirect/WHO-2019-nCoV-Post_COVID-19_condition-Clinical_case_definition-2021.1 (Full text)]
* Feb 2024, [https://www.nature.com/articles/s41593-024-01576-9 Blood–brain barrier disruption and sustained systemic inflammation in individuals with long COVID-associated cognitive impairment]<ref>{{Cite journal|title=Blood–brain barrier disruption and sustained systemic inflammation in individuals with long COVID-associated cognitive impairment|date=2024-02-22|url=https://www.nature.com/articles/s41593-024-01576-9|journal=Nature Neuroscience|pages=1–12|last=Greene|first=Chris|last2=Connolly|first2=Ruairi|last3=Brennan|first3=Declan|last4=Laffan|first4=Aoife|last5=O’Keeffe|first5=Eoin|last6=Zaporojan|first6=Lilia|last7=O’Callaghan|first7=Jeffrey|last8=Thomson|first8=Bennett|last9=Connolly|first9=Emma|last10=Argue|first10=Ruth|last11=Martin-Loeches|first11=Ignacio|language=en|doi=10.1038/s41593-024-01576-9|issn=1546-1726}}</ref>
::Report including the [[World Health Organization Long COVID diagnostic criteria]]

==Articles and editorials ==
*Jun 15, 2021, White Paper: A Detailed Study of Patients with Long-Haul COVID<ref name="Fairthealth2021">{{Cite web|url=https://s3.amazonaws.com/media2.fairhealth.org/whitepaper/asset/A%20Detailed%20Study%20of%20Patients%20with%20Long-Haul%20COVID--An%20Analysis%20of%20Private%20Healthcare%20Claims--A%20FAIR%20Health%20White%20Paper.pdf | publisher=FAIR Health | date = Jun 18, 2020 | title = A Detailed Study of Patients with Long-Haul COVID: An Analysis of Private Healthcare Claims. A FAIR Health White Paper}}</ref> [https://s3.amazonaws.com/media2.fairhealth.org/whitepaper/asset/A%20Detailed%20Study%20of%20Patients%20with%20Long-Haul%20COVID--An%20Analysis%20of%20Private%20Healthcare%20Claims--A%20FAIR%20Health%20White%20Paper.pdf (Full text)]
*Jun 24, 2021, Covid-19: Third of people infected have long term symptoms<ref name="ODowd2021">{{Cite journal|last = O'Dowd | first = Adrian | date = 2021-06-24 | title = Covid-19: Third of people infected have long term symptoms|url=https://www.bmj.com/content/373/bmj.n1626|journal=BMJ|language=en|volume=373|pages=n1626|doi=10.1136/bmj.n1626|issn=1756-1833|pmid=34168002}}</ref> [https://www.bmj.com/content/373/bmj.n1626 (Editorial)]

==Presentations, interviews and videos==
*Aug 2020, [https://solvecfs.org/wp-content/uploads/2020/08/Post-COVID%20ME-to%20Solve.pdf Will Covid-19 lead to ME/CFS in some people?] - presentation - Dr [[Anthony Komaroff]]
*Jul 2020, [https://www.youtube.com/watch?v=IIeOoS_A4c8 Message in a Bottle] video - [[LongCovidSOS]]
*Jun 2020, [https://www.biomax.com/lib/press-releases/Initial-Result-Announcment_English.pdf Health of Corona Patients at Home in Alarmingly Poor Health Even After Several Months - Dutch Lung Foundation] - Press release (English translation) - [https://www.ad.nl/binnenland/longfonds-gezondheid-thuiszittende-coronapatienten-schrikbarend-slecht~a45346fe/ Dutch]

==Letters and blogs==
*May 2020, [http://somatosphere.net/2020/mild-covid.html/ Very, very mild: Covid-19 symptoms and illness classification] - [[Felicity Callard]]
*Jul 2020, [https://meassociation.org.uk/wp-content/uploads/ForwardME-Letter-re-Covid-19-Management-and-Exercise-Caution-27.08.20.pdf Letter re Covid-19 Management and Exercise Caution]<ref name="GETcovidForwardME">{{Cite web|url=https://meassociation.org.uk/wp-content/uploads/ForwardME-Letter-re-Covid-19-Management-and-Exercise-Caution-27.08.20.pdf | date = 2020-08-27 | last = Forward-ME | authorlink = Forward-ME| title = Letter re Covid-19 Management and Exercise Caution}}</ref> - [[Forward-ME]]
*Sep 2020, [https://mecfsresearchreview.me/2020/09/17/understanding-long-covid-a-shortcut-to-solving-me-cfs/?#symptoms Understanding Long Covid, A Shortcut to Solving ME/CFS?] - [[Simon McGrath]]
*Sep 2020, [https://wellcomeopenresearch.org/articles/5-224 Why the Patient-Made Term 'Long Covid' is needed] - Open Letter
*Oct 2020, [https://blogs.bmj.com/bmj/2020/10/01/why-we-need-to-keep-using-the-patient-made-term-long-covid/ Why we need to keep using the patient made term “Long Covid”] - [[The BMJ]]
*Jan 2021, [https://directorsblog.nih.gov/tag/post-acute-sequelae-of-covid-19/ Trying to Make Sense of Long COVID Syndrome] - Dr. Francis Collins, CDC director

==National and international health bodies==
*[https://doi.org/10.1136/bmj.m2912 NICE cautions against using graded exercise therapy for patients recovering from COVID-19]<ref name="NICEcautionBMJ">{{Cite journal | last = Torjesen | first = Ingrid | date = 2020-07-21 | title = NICE cautions against using graded exercise therapy for patients recovering from covid-19|url=https://www.bmj.com/content/370/bmj.m2912|journal=The BMJ|language=en|volume=370|doi=10.1136/bmj.m2912|issn=1756-1833|pmid=32694164}}</ref>

==News articles ==
* Feb 2024, [https://www.nature.com/articles/s41593-024-01576-9 Blood–brain barrier disruption and sustained systemic inflammation in individuals with long COVID-associated cognitive impairment]
* Oct 2020, [https://www.theguardian.com/world/2020/oct/21/women-aged-50-60-at-greatest-risk-of-long-covid-experts-suggest Women aged 50-60 at greatest risk of ‘long Covid’, experts suggest] - The Guardian

* Oct 2020, [https://www.wsj.com/articles/these-doctors-have-long-term-covid-now-theyre-pushing-for-better-care-11603144474 These Doctors Have Long-Term Covid. Now They’re Pushing for Better Care.] - Wall Street Journal
* Oct 2020, [https://time.com/5897992/long-haul-coronavirus-me-cfs/ Have We Been Thinking About Long-Haul Coronavirus All Wrong?] - Time
* Oct 2020, [https://www.nihr.ac.uk/news/living-with-covid-nihr-publishes-dynamic-themed-review-into-ongoing-covid/25891 Living with COVID: NIHR publishes dynamic-themed review into 'ongoing COVID'] - National Institute of Health Research
* Oct 2020, [https://www.theguardian.com/world/2020/oct/04/long-covid-the-evidence-of-lingering-heart-damage Long Covid: the evidence of lingering heart damage] - The Observer
* Sep 2020, [https://www.bbc.co.uk/news/uk-england-leicestershire-54106073 Coronavirus patient unable to work six months on] - BBC News
* Aug 2020, [https://www.huffingtonpost.co.uk/entry/long-term-symptoms-of-covid-19-identified-in-study-of-hospital-patients_uk_5f2bc0f6c5b64d7a55eefcfa The Most Common Long-Term Symptoms Of Covid-19] - HuffPost UK
* Aug 2022, [https://www.nature.com/articles/d41586-022-02140-w Long-COVID treatments: why the world is still waitin] - Nature
* Aug 2022, [https://www.statnews.com/2022/08/19/long-covid-plan-good-start-needs-to-go-further/ Biden’s long Covid plan is a good start. But it needs to go further] - Ryan Prior and Kimberly Knackstedt, Stat News
* Aug 2022, [https://www.latimes.com/opinion/story/2022-08-21/long-covid-treatment-research Op-Ed: We're starting to understand long COVID. Next we can fight it]
* Jul 2020, [https://www.sciencemag.org/news/2020/07/brain-fog-heart-damage-covid-19-s-lingering-problems-alarm-scientists From ‘brain fog’ to heart damage, COVID-19’s lingering problems alarm scientists] - Science Mag

==Articles for journalists covering Long COVID ==
* [https://www.cjr.org/covering_the_pandemic/how-to-cover-covid-19-patients-sensitively.php How to cover COVID-19 patients sensitively] - Fiona Lowenstein, Columbia Journalism Review
*[https://www.wearebodypolitic.com/bodytype/2021/7/6/long-covid-guide Body Politic's Comprehensive Guide to Covering Long COVID] - Fiona Lowenstein
*[https://centerforhealthjournalism.org/resources/lessons/what-reporters-need-know-when-covering-long-covid Long COVID coverage often falls short, but here's how reporters can do better] - Fiona Lowenstein, Center for Health Journalism
*2021, [https://www.theopennotebook.com/2021/01/26/how-to-report-with-accuracy-and-sensitivity-on-contested-illnesses/ How to Report with Accuracy and Sensitivity on Contested Illnesses] - Julie Rehmeyer, Open Notebook

==See also==
*[[List of famous people with long COVID]]
*[[List of open letters about long COVID]]
*[[Post-COVID-19 illness]]
*[[COVID-19]] coronavirus disease 19
*[[Myalgic encephalomyelitis|Myalgic encephalomyelitis and chronic fatigue syndrome]]
*[[Postviral fatigue syndrome]]
*[[Post-Ebola syndrome]]
*[[Encephalitis lethargica]]
*[[Paul Garner]]
*[[Nisreen Alwan]]
*[[Blood-brain barrier]]

==Learn more==
*[https://www.gov.uk/government/publications/covid-19-long-term-health-effects/covid-19-long-term-health-effects COVID-19 Long Term Health Effects]
*[https://www.bmj.com/sites/default/files/infographics/1353078336/static-infographic/background.png Infographic: "Long covid" in primary care] - BMJ journal
* List of long COVID studies (draft) - [[MEAction|#MEAction]]

==References==
{{reflist}}

[[Category:Potential comorbidities]]
[[Category:Diagnoses]]
[[Category:Long COVID]]

Long COVID

2025-10-15T20:15:27Z

Yakov:Add that half of LC is ME

[[File:Long-COVID.jpg|alt=Long COVID logo with Coronavirus icon |thumb]]
'''Long COVID''', '''long tail covid''', '''Post-Acute Sequelae of COVID-19''' '''(PASC)''', '''post-acute COVID-19''' and '''ongoing COVID''' are terms used to describe a group of long term health problems that are found in a significant minority of people who developed [[COVID-19]] and remain ill a number of weeks or months later.<ref name="Navabi2020">{{Cite journal | title = Long covid: How to define it and how to manage it|last = Nabavi|first = Nikki|url=https://www.bmj.com/content/370/bmj.m3489 | date = Sep 7, 2020|journal=The BMJ|volume=370|pages=bmj.m3489}}</ref><ref name="BMJ11Aug2020" /><ref name="long-haulers-redefining">{{Cite news | url=https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/ | title = Long-Haulers Are Redefining COVID-19|last = Yong|first = Ed | date = Aug 19, 2020|work=The Atlantic|access-date=2020-08-21|archive-url=|archive-date=|url-status=|issn=1072-7825|quote=}}</ref><ref name="NIHR.ac.uk15Oct2020">{{Cite web|url=https://www.nihr.ac.uk/news/living-with-covid-nihr-publishes-dynamic-themed-review-into-ongoing-covid/25891 | title = Living with COVID: NIHR publishes dynamic themed review into ‘ongoing COVID’|last = National Institute for Health Research|first = | authorlink = | date = | website = [[National Institute for Health Research]] |archive-url=|archive-date=|url-status=|access-date=2020-10-15}}</ref> About half of people with Long COVID have [[ME/CFS]]<ref name="Dehlia2025">{{Cite journal | title = The persistence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) after SARS-CoV-2 infection: A systematic review and meta-analysis | last1 = Dehlia | first1 = Ankush | last2 = Guthridge | first2 = Mark A. | url = https://www.sciencedirect.com/science/article/pii/S0163445324002317 | year = 2025 | journal = Journal of Infection | volume = 89 | pages = 106297 | number = 6 | doi = 10.1016/j.jinf.2024.106297 | issn = 0163-4453}}</ref>.

The name '''Long COVID''' was coined by patient [[Elisa Perego]] in May 2020,<ref name="BMJ1Oct2020" /> and in February 2021 the [[Centers for Disease Control|CDC]] introduced the alternative name '''Post-Acute Sequelae of COVID-19''' (PASC).<ref name="PASC-blog">{{Cite web|url=https://directorsblog.nih.gov/tag/post-acute-sequelae-of-covid-19| title =
Trying to Make Sense of Long COVID Syndrome
| date = Jan 19, 2021|first = Francis|last = Collins | authorlink = Francis Collins |access-date = Mar 1, 2021}}</ref>

In February 2020, the [[World Health Organization]] stated that the expected recovery time from [[COVID-19]] was 2 weeks for mild cases, and between three and six weeks for severe cases;<ref name="WHOFeb2020">{{Cite web|url=https://www.who.int/dg/speeches/detail/who-director-general-s-opening-remarks-at-the-media-briefing-on-covid-19---24-february-2020 | title = WHO Director-General's opening remarks at the media briefing on COVID-19|last = World Health Organization | first = | authorlink = World Health Organization | date = Feb 24, 2020 | website = [[World Health Organization]]|language=en|archive-url=|archive-date=|url-status=|access-date=2020-09-24}}</ref> follow-up studies then identified a significant number of COVID-19 patients had remained ill much longer than this: those with long COVID.<ref name="Navabi2020" /><ref name="BMJ11Aug2020" />

A similar phenomenon to long COVID occurred after the 2003 outbreak of the similar SARS coronavirus, which lead to a [[Severe acute respiratory syndrome#post-SARS|post-SARS syndrome]] being proposed that included chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep. Another study found a subgroup SARS survivors developed [[chronic fatigue syndrome]] immediately after SARS.<ref name="Moldofsky2011">{{Cite journal | last = Moldofsky|first = Harvey | last2 = Patcai | first2 = John | date = 2011-03-24 | title = Chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep in chronic post-SARS syndrome; a case-controlled study|url=https://doi.org/10.1186/1471-2377-11-37|journal=BMC Neurology|volume=11|issue=1 | pages = 37|doi=10.1186/1471-2377-11-37|issn=1471-2377|pmc = 3071317|pmid=21435231}}</ref>
<ref name="Lam2009">{{Cite journal|last = Lam|first = Marco Ho-Bun | last2 = Wing | first2 = Yun-Kwok | last3 = Yu | first3 = Mandy Wai-Man | last4 = Leung | first4 = Chi-Ming | last5 = Ma | first5 = Ronald C.W. | last6 = Kong | first6 = Alice P.S. | last7 = So | first7 = W.Y. | last8 = Fong | first8 = Samson Yat-Yuk | last9 = Lam | first9 = Siu-Ping | date = 2009-12-14 | title = Mental Morbidities and Chronic Fatigue in Severe Acute Respiratory Syndrome Survivors: Long-term Follow-up | url = https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/415378|journal=Archives of Internal Medicine|language=en|volume=169|issue=22|pages=2142–2147|doi=10.1001/archinternmed.2009.384|issn=0003-9926}}</ref>

==Long-haulers==
A "long-hauler" is someone with long COVID, meaning someone who became ill with confirmed or suspected [[COVID-19]], who has remained ill with long-term symptoms many weeks or months later after first becoming ill.<ref name="long-haulers-redefining" /><ref name="BMJ1Oct2020">{{Cite web|url=https://blogs.bmj.com/bmj/2020/10/01/why-we-need-to-keep-using-the-patient-made-term-long-covid/ | title = Why we need to keep using the patient made term “Long Covid” | date = 2020-10-01 | last = Perego|first =Elisa | authorlink = Elisa Perego | last2 =Callard | first2 = Felicity | authorlink2 = Felicity Callard | last3 = Stras | first3 = Laurie | authorlink3 = Laurie Stras | last4 = Melville-Jóhannesson | first4 = Barbara | authorlink4 = Barbara Melville-Jóhannesson | last5 = Pope | first5 = Rachel | authorlink5 = Rachel Pope | last6 = Alwan | first6 =
Nisreen A | authorlink6 = Nisreen Alwan|website=The BMJ|language=en-US|access-date=2020-10-11}}</ref>

==What is long COVID==
[[File:Long-COVID-1in10.jpg|alt=Long COVID poster - 1 in 10 people with COVID-19 may develop long COVID|thumb]]
Long COVID appears to be a multisystem disease, and may occur after any severity of COVID-19, including after relatively mild cases.<ref name="BMJ11Aug2020" /><ref name="BMJ1Oct2020" />

=== Signs and symptoms ===
Patient surveys have reported that the following symptoms commonly occur in long COVID.
*[[Fatigue]], which may be extreme (profound)
*[[myalgia|Muscle pain]] or body aches
*[[dyspnea|Breathlessness]]
*[[Concentration problems]]
*Inability to [[exercise]]/[[exercise intolerance]]
*[[Headache]]
*[[Insomnia]] or [[sleep dysfunction|problems sleeping]]
*Heavy chest, a feeling of pressure on the chest, or chest pain
Other reported symptoms include:
*[[Anxiety]]
*[[Paresis|Muscle weakness]]
*[[Memory problems]]
*[[Skin rash]]
*[[Sore throat]] and [[dysphagia|difficulty swallowing]]
*[[Heart palpitation]]s
*[[Fever]]
*[[Diarrhea]]
*[[Dizziness]]
*The sensation of [[pins and needles]]
*[[Cough]]
*[[Low-grade fever]]
*[[Dysgeusia|Loss of sense of taste]] and [[anosmia|loss of sense of smell]]
*[[Joint pain]]
*[[new allergies and intolerances|New onset allergies]], which may lead to [[anaphylaxis|anaphylactic shock]] in some cases<ref name="Davis2021a" />
*New onset [[diabetes]]<ref name="Rubino2020">{{Cite journal|last = Rubino|first = Francesco | last2 = Amiel | first2 = Stephanie A. | last3 = Zimmet | first3 = Paul | last4 = Alberti | first4 = George | last5 = Bornstein | first5 = Stefan | last6 = Eckel | first6 = Robert H. | last7 = Mingrone | first7 = Geltrude | last8 = Boehm | first8 = Bernhard | last9 = Cooper | first9 = Mark E. | date = 2020-08-20 | title = New-Onset Diabetes in Covid-19|url=https://doi.org/10.1056/NEJMc2018688|journal=New England Journal of Medicine|volume=383|issue=8 | pages = 789–790|doi=10.1056/NEJMc2018688|issn=0028-4793|pmc = 7304415|pmid=32530585}}</ref>
*New onset [[Hypertension|high blood pressure]]<ref name="Navabi2020" /><ref name="Lambert25Jul2020" /><ref name="NHSlongSep2020">{{Cite web|url=https://www.gov.uk/government/publications/covid-19-long-term-health-effects/covid-19-long-term-health-effects | title = COVID-19 Long Term Health Effects|last = National Health Service | first = | authorlink = National Health Service | date = Sep 7, 2020 | website = |archive-url=|archive-date=|url-status=|access-date=}}</ref><ref name="Yellin2020" />
*New [[Menstrual problems in ME/CFS|menstrual problems]]<ref name="Davis2021" />

{{Quote box|“A very common feature is the relapsing, remitting nature of the illness, where you feel as though you’ve recovered, then it hits you back|source=Dr. Nisreen Alwan, BMJ, Sep 2020}}

===World Health Organization Long COVID diagnostic criteria ===
Post COVID-19 condition ("Long COVID") definition
*history of probable or confirmed SARS-CoV-2 infection
*symptom(s) last 2 months from the start of COVID-19 (or 3 months for asymptomatic COVID-19)
*symptom(s) can't be explained by an alternative diagnosis
*no minimum number of symptoms
*symptom(s) generally affect day to day functioning
*new onset of symptoms - symptoms begin after recovery from COVID-19 or begin at the start of COVID-19 and persist
*symptoms can fluctuate or improve then relapse over time

Common symptoms:
*[[fatigue]]
*[[shortness of breath]]
*[[cognitive dysfunction]] but there are others
Other symptoms:
*[[abdominal pain]], [[menstrual and period problems]], [[parosmia|altered smell]]/[[dysgeusia|taste]], [[anxiety]] , [[blurred vision]], [[chest pain]], [[cognitive dysfunction]] (e.g. brain fog), [[cough]], [[depression]], [[dizziness]], [[fatigue]], intermittent [[fever]], gastrointestinal issues ([[diarrhoea]], [[constipation]], [[acid reflux]]), [[headache]], [[memory problems|memory issues]], [[arthralgia|joint pain]], [[myalgia|muscle pain]], [[muscle spasm]]s, [[nerve pain|neuralgias]] (nerve pain), [[new allergies and intolerances|new onset allergies]], [[paresthesia|pins and needles sensations]], [[post-exertional malaise]], [[dyspnea|shortness of breath]], [[:category:sleep disorders|sleep disorder]]s, [[heart palpitations|tachycardia/palpitations]], [[tinnitus|tinnitus and other hearing issues]]
 Notes:
*Children - separate criteria may be needed
*Clusters - clusters of 2 or more related symptoms may occur together<ref name="WHO-longcovid-criteria" />

{{See also|World Health Organization Long COVID diagnostic criteria}}

=== Four different syndromes ===
A recent review suggested that long COVID may actually be four differing syndromes:
* [[Post-COVID-19 illness#pics|Post-Intensive Care Syndrome]]
* [[Postviral fatigue syndrome|Postviral Fatigue Syndrome]] (ME/CFS)
* [[Post-Acute Sequelae of COVID-19|Long Term COVID Syndrome]]
* Permanent organ damage
Patients with long COVID may have several syndromes at once.<ref name="NIHR15Oct2020" />

== COVID-19 testing ==
While some people with long COVID did have a positive test result for COVID-19, others were denied tests due to the limited availability of tests at the time, or they tested negative but were found to have clear evidence of COVID-19 from blood count tests or chest X-rays.<ref name="NIHR15Oct2020">{{Cite web|url=https://evidence.nihr.ac.uk/themedreview/living-with-covid19 | title = Living with covid-19. A dynamic review of the evidence around ongoing covid-19 symptoms (often called long covid). | last = NIHR|first = | authorlink = | date = October 2020 | website = evidence.nihr.ac.uk|language=en-GB|archive-url=|archive-date=|url-status=|access-date=2020-10-15}}</ref><ref name="Kingstone2020" /> Some people with Long COVID have described never having a cough or fever at the start of their illness, but developed these symptoms later. Long COVID diagnosis does not depend on a previous positive test.<ref name="NIHR15Oct2020" /><ref name="Kingstone2020" />

==Clinical findings ==

There is no blood test or diagnostic biomarker to identify patients with long COVID. A study of UK patients by Dennis et al (2020) found that just over 10% of long COVID patients had abnormal findings on the standard tests and did not find an association between standard test results and degree of organ damage or long COVID severity.<ref name="Dennis2020" /> The same study used MRI scans combined with patient questionnaires to assess organ damage, finding that multi-organ impairment was common in people with long COVID, despite the fact that 80% had not been hospitalized for [[COVID-19]], the average patient age was forty-four years old, and rates of pre-existing conditions were also low.<ref name="Dennis2020" />

==Research findings ==
{{Main article|page_name=Long COVID pathophysiology}}

Surveys of data collected and published by long haulers using social media were the first evidence of what symptoms and health problems were caused by long COVID.<ref name="bodypoliticMay2020" /> Later academic studies confirmed many of the initial long hauler survey findings, although many only involved patients discharged from hospital,<ref name="Puntmann2020" /> patients who had been able to access early testing and tested positive, or patients who had sought medical care in a particular location.<ref name="Arnold2020b" /> People with mild COVID-19 symptoms, leaving people denied testing and those who may have had false negative test results and people who tested positive but were asymptomatic underrepresented in long COVID research.<ref name="bodypoliticMay2020" />

==Treatment==

===Pacing===
Pacing is a method of activity management which aims to adapt everday activities in order to avoid relapses or increased symptoms.
{{See also|Pacing}}

===Exercise therapy ===
ME/CFS patient groups have raised concerns about the use of [[graded exercise therapy]] (GET) in long COVID patients and a similar warning has been issued by [[NICE]] in the [[United Kingdom|UK]].<ref name="GETcovidForwardME" /> Graded exercise therapy, which is sometimes incorrectly referred to as "activity management" involves patients initially reducing their activity levels to a level that prevents regular crashes, and then typically increasing activity by 10% each week regardless of any increased symptoms or worsening illness. In graded exercise patients are told to ignore deterioration or increased symptoms and "push through" them.

====Theory and evidence ====
In graded exercise therapy patients are told that their symptoms are caused only by [[deconditioning|inactivity]] and other "bad habits" rather than an underlying illness. These assumptions have very weak evidence, and significant evidence exists of underlying illness in ME/CFS; there is a lack of research about exercise therapy for long COVID illness<ref name="Navabi2020" /> but some symptoms are inconsistent with this "deconditioning" assumption and some research has found physical abnormalities in some patients weeks or months after infection. Surveys of ME/CFS patients have consistently shown that large numbers of patients deteriorate as a result of graded exercise therapy, and a significant number become severely ill and never return to the level of functioning they had before the treatment.

==ME/CFS==
[[Myalgic Encephalomyelitis]] (ME) often has its onset immediately after a viral or bacterial infection.<ref name="ICC2011primer">{{citation|title=Myalgic encephalomyelitis: Adult & Paediatric: International Consensus Primer for Medical Practitioners|date=2012|url=http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf|last1=Carruthers|first1=BM|authorlink1=Bruce Carruthers|isbn=978-0-9739335-3-6|last2=van de Sande|first2=MI|authorlink2=Marjorie van de Sande|last3=De Meirleir|first3=KL|authorlink3=Kenny de Meirleir|last4=Klimas|first4=NG|authorlink4=Nancy Klimas|last5=Broderick|first5=G|authorlink5=Gordon Broderick|last6=Mitchell|first6=T|authorlink6=Terry Mitchell|last7=Staines|first7=D|authorlink7=Donald Staines|last8=Powles|first8=ACP|authorlink8=A C Peter Powles|last9=Speight|first9=N|authorlink9=Nigel Speight|last10=Vallings|first10=R|authorlink10=Rosamund Vallings|last11=Bateman|first11=L|authorlink11=Lucinda Bateman|last12=Bell|first12=DS|authorlink12=David Bell|last13=Carlo-Stella|first13=N|authorlink13=Nicoletta Carlo-Stella|last14=Chia|first14=J|authorlink14=John Chia|last15=Darragh|first15=A|authorlink15=Austin Darragh|last16=Gerken|first16=A|authorlink16=Anne Gerken|last17=Jo|first17=D|authorlink17=Daehyun Jo|last18=Lewis|first18=DP|authorlink18=Donald Lewis|last19=Light|first19=AR|authorlink19=Alan Light|last20=Light|first20=KC|authorlink20=Kathleen Light|last21=Marshall-Gradisnik|first21=S|authorlink21=Sonya Marshall-Gradisnik|last22=McLaren-Howard|first22=J|authorlink22=John McLaren-Howard|last23=Mena|first23=I|authorlink23=Ismael Mena|last24=Miwa|first24=K|authorlink24=Kunihisa Miwa|last25=Murovska|first25=M|authorlink25=Modra Murovska|last26=Stevens|first26=SR|authorlink26=Staci Stevens}}</ref> In fact, one of its previous names was [[postviral fatigue syndrome]]. ME has been a sequela of over [[Epidemic myalgic encephalomyelitis|one hundred outbreaks]], in addition to sporadic infections. ME/CFS is not normally diagnosed until symptoms have persisted for six months or more, and tests must be run to exclude other possible causes of the symptoms.<ref name="SEID2015">{{Citation|last = Institute of Medicine | authorlink = Institute of Medicine | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness|location=Washington, DC|publisher=The National Academies Press | date = 2015 | url=https://www.ncbi.nlm.nih.gov/books/NBK284902/}}</ref> Some contagious diseases including [[Epstein-Barr virus]], certain [[enterovirus]]es,<ref name="ICC2011primer" /> and the [[Severe acute respiratory syndrome|SARS]] coronavirus,<ref name="Moldofsky2011" /> have caused outbreaks of ME/CFS.

About half of people with Long COVID fulfilled the diagnostic criteria for [[ME/CFS]] according to a 2025 systematic review and meta-analysis<ref name="Dehlia2025" /> which looked at all the available evidence. Most included studies used the [[Canadian Consensus Criteria]] to diagnose, a few also used the [[Systemic Exertion Intolerance Disease|IoM]] criteria, [[International Consensus Criteria]] and [[DePaul Symptom Questionnaire]].

The 2025 Recover-Adult Study followed 11,785 adults who'd had a SARS-COV-2 infection and 1,439 uninfected adults. The study found a SARS-COV-2 infection is particularly likely to trigger [[ME/CFS]] symptoms:<ref name=":0">{{Cite journal|title=Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER-Adult Study|date=2025-4|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11968624/|journal=Journal of General Internal Medicine|volume=40|issue=5|pages=1085–1094|last=Vernon|first=Suzanne D.|last2=Zheng|first2=Tianyu|last3=Do|first3=Hyungrok|last4=Marconi|first4=Vincent C.|last5=Jason|first5=Leonard A.|last6=Singer|first6=Nora G.|last7=Natelson|first7=Benjamin H.|last8=Sherif|first8=Zaki A.|last9=Bonilla|first9=Hector Fabio|last10=Taylor|first10=Emily|last11=Mullington|first11=Janet M.|doi=10.1007/s11606-024-09290-9|pmid=39804551|issn=0884-8734}}</ref>

* 4.5% of infected adults fully met Institute of Medicine (IOM) clinical diagnostic criteria for ME/CFS.
** 0.6% of uninfected adults fully met IOM criteria.
* 39.8% of infected adults had at least one ME/CFS symptom but didn't meet the full IOM criteria.
** 16.1% of uninfected adults partially met IOM criteria.

[[Post-exertional malaise]] was the most common ME/CFS symptom after COVID infection. Nearly 90% of people with post-infection ME/CFS also met the criteria for long COVID.<ref name=":0" />

According to [[Infectious disease|infectious diseases]] and [[Immune system|immunology]] researcher, [[Sonya Marshall-Gradisnik]], there appeared to be a correlation between the illnesses.<blockquote>"The symptom overlap between [[ME/CFS]] and long-COVID is quite astounding," Professor Marshall-Gradisnik said.Those symptoms can be [[fatigue]], they have [[pain]], [[joint pain]], [[Sleep dysfunction|sleep disturbances]], [[headaches]], they have [[Cardiac dysfunctions|cardiac]] changes. Notably, they've got [[brain fog]] and [[Cognitive dysfunction|cognitive]] issues with [[Memory problems|memory]], [and] [[Word-finding problems|word choice]] becomes a problem."<ref>{{Cite news | url=https://www.abc.net.au/news/2022-03-18/long-covid-and-chronic-fatigue-links/100916990 | title = 'Symptom overlap is quite astounding': Researchers probe links between long-COVID and chronic fatigue | date = 2022-03-17|work=ABC News|access-date=2022-06-09|language=en-AU}}</ref></blockquote>

==Patient surveys ==
'''Not peer reviewed'''
* May 2020, [https://patientresearchcovid19.com/research/report-1/ What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team]<ref name="bodypoliticMay2020">{{Cite web|url=https://docs.google.com/document/u/0/d/1KmLkOArlJem-PArnBMbSp-S_E3OozD47UzvRG4qM5Yk/mobilebasic | title = What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team | date = May 11, 2020|vauthors=Assaf G, Davis H, McCorkell L, Wei H, O'Neil B, Akrami A, Low R, Mercier J, A A, L T, C A, S M, N L, H N, D JD, S}}</ref> - by [[Body Politic|Body Politic and Patient Led Research Collaborative]]
::Data collected: Apr 21 - May 2 2020. Respondents: 640

* Jul 2020, [https://static1.squarespace.com/static/5e8b5f63562c031c16e36a93/t/5f459ef7798e8b6037fa6c57/1598398215120/2020+Survivor+Corps+COVID-19+%27Long+Hauler%27+Symptoms+Survey+Report+%28revised+July+25.4%29.pdf COVID-19 “Long Hauler” Symptoms Survey Report]<ref name="Lambert25Jul2020">{{Cite web|url=https://static1.squarespace.com/static/5e8b5f63562c031c16e36a93/t/5f459ef7798e8b6037fa6c57/1598398215120/2020+Survivor+Corps+COVID-19+%27Long+Hauler%27+Symptoms+Survey+Report+%28revised+July+25.4%29.pdf | title=COVID-19 “Long Hauler” Symptoms Survey Report|last = Lambert | first = Natalie J | author-link = Natalie Lambert | last2 = Survivor Corps | authorlink2 = Survivor Corps|publisher=Indiana University School of Medicine | date = Jul 2020}}</ref> - with Survivor Corps
::Data collected: Jul 25, 2020. Respondents: 1,567+
::
:* Dec 2020, [https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v2 Charactering Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact] - by [https://patientresearchcovid19.com/ Body Politic and Patient Led Research Collaborative]
:** Respondents: 3,762+

==Notable studies==
*Jul 24, 2020, Outcomes of Cardiovascular Magnetic Resonance Imaging in Patients Recently Recovered From Coronavirus Disease 2019 (COVID-19)<ref name="Puntmann2020">{{Cite journal | last = Puntmann | first = Valentina O. | last2 = Carerj | first2 = M. Ludovica | last3 = Wieters | first3 = Imke | last4 = Fahim | first4 = Masia | last5 = Arendt | first5 = Christophe | last6 = Hoffmann | first6 = Jedrzej | last7 = Shchendrygina | first7 = Anastasia | last8 = Escher | first8 = Felicitas | last9 = Vasa-Nicotera | first9 = Mariuca | date = 2020-07-27 | title = Outcomes of Cardiovascular Magnetic Resonance Imaging in Patients Recently Recovered From Coronavirus Disease 2019 (COVID-19)|url=https://jamanetwork.com/journals/jamacardiology/fullarticle/2768916|journal=JAMA Cardiology|language=en|doi=10.1001/jamacardio.2020.3557|issn=2380-6583}}</ref> - [https://jamanetwork.com/journals/jamacardiology/fullarticle/2768916 (Full text)]
*Aug 11, 2020, Management of post-acute covid-19 in primary care<ref name="BMJ11Aug2020">{{cite journal | title = Management of post-acute covid-19 in primary care|last = Greenhalgh|first = Trisha | authorlink = Trisha Greenhalgh | first2 = Matthew | last2 = Knight | authorlink2 = Matthew Knight | authorlink3 = Christine A'Court | first3 = Christine | last3 = A'Court | first4 = Maria | last4 = Buxton | first5 = Laiba | last5 = Husain|journal=The BMJ | date = Aug 11, 2020|volume=370|doi=10.1136/bmj.m3026|pages=m3026 | url = https://doi.org/10.1136/bmj.m3026}}</ref> - [https://doi.org/10.1136/bmj.m3026 (Full text)]
*Aug 20, 2020, New-Onset Diabetes in Covid-19<ref name="Rubino2020" /> - [https://www.nejm.org/doi/full/10.1056/NEJMc2018688 (Full text)]
*Oct 1, 2020, Long-term consequences of COVID-19: research needs<ref name="Yellin2020">{{Cite journal|last = Yelin | first = Dana | last2 = Wirtheim | first2 = Eytan | last3 = Vetter | first3 = Pauline | last4 = Kalil | first4 = Andre C. | last5 = Bruchfeld | first5 = Judith | last6 = Runold | first6 = Michael | last7 = Guaraldi | first7 = Giovanni | last8 = Mussini | first8 = Cristina | last9 = Gudiol | first9 = Carlota | date = 2020-10-01 | title = Long-term consequences of COVID-19: research needs|url=https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(20)30701-5/abstract|journal=The Lancet Infectious Diseases|language=English|volume=20|issue=10|pages=1115–1117|doi=10.1016/S1473-3099(20)30701-5|issn=1473-3099|pmid=32888409}}</ref> - [https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(20)30701-5/fulltext (Full text)]
*Oct 14, 2020, Finding the 'right' GP: a qualitative study of the experiences of people with long-COVID<ref name="Kingstone2020">{{Cite journal | last = Kingstone | first = Tom | authorlink = | last2 = Taylor | first2 = Anna K. | authorlink2 = | last3 = O'Donnell | first3 = Catherine A. | authorlink3 = | last4 = Atherton | first4 = Helen | authorlink4 = | last5 = Blane | first5 = David N. | authorlink5 = | last6 = Chew-Graham | first6 = Carolyn A. | authorlink6 = Carolyn Chew-Graham | date = 2020-10-14 | title = Finding the 'right' GP: a qualitative study of the experiences of people with long-COVID|url=https://bjgpopen.org/content/early/2020/10/12/bjgpopen20X101143|journal=BJGP Open|language=en|volume=|issue=|pages=|doi=10.3399/bjgpopen20X101143|issn=2398-3795|pmc=|pmid=33051223|access-date=|quote=|via=}}</ref> - [https://bjgpopen.org/content/bjgpoa/early/2020/10/12/bjgpopen20X101143.full.pdf (Full text)]
*Oct 16, 2020, Multi-organ impairment in low-risk individuals with long COVID<ref name="Dennis2020">{{Cite journal|last = Dennis | first = Andrea | authorlink = | last2 = Wamil | first2 = Malgorzata | authorlink2 = | last3 = Kapur | first3 = Sandeep | authorlink3 = | last4 = Alberts | first4 = Johann | authorlink4 = | last5 = Badley | first5 = Andrew D. | authorlink5 = | last6 = Decker | first6 = Gustav Anton | authorlink6 = | last7 = Rizza | first7 = Stacey A. | last8 = Banerjee | first8 = Rajarshi | last9 = Banerjee | first9 = Amitava | authorlink9 = Amitava Banerjee | date = 2020-10-16 | title = Multi-organ impairment in low-risk individuals with long COVID|url=https://www.medrxiv.org/content/10.1101/2020.10.14.20212555v1|journal=medRxiv|language=en|volume=|issue=|pages=2020.10.14.20212555|doi=10.1101/2020.10.14.20212555|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://doi.org/10.1101/2020.10.14.20212555 (Full text)]
*Oct 21, 2020, Attributes and predictors of Long-COVID: analysis of COVID cases and their symptoms collected by the Covid Symptoms Study App<ref name="Sudre2020a">{{Cite journal|last = Sudre | first = Carole H. | authorlink = | last2 = Murray | first2 = Benjamin | authorlink2 = | last3 = Varsavsky | first3 = Thomas | authorlink3 = | last4 = Graham | first4 = Mark S. | authorlink4 = | last5 = Penfold | first5 = Rose S. | authorlink5 = | last6 = Bowyer | first6 = Ruth C. | authorlink6 = | last7 = Pujol | first7 = Joan Capdevila | last8 = Klaser | first8 = Kerstin | last9 = Antonelli | first9 = Michela | date = 2020-10-19|others= | title = Attributes and predictors of Long-COVID: analysis of COVID cases and their symptoms collected by the Covid Symptoms Study App | url = https://www.medrxiv.org/content/10.1101/2020.10.19.20214494v1|journal=medRxiv|language=en|volume=|issue=|pages=2020.10.19.20214494|doi=10.1101/2020.10.19.20214494|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://www.medrxiv.org/content/10.1101/2020.10.19.20214494v1.full-text (Full text)]
*Dec 2020 (pre-print) / Jul 15, 2021, Characterizing long COVID in an international cohort: 7 months of symptoms and their impact<ref name="Davis2021a">{{Cite journal|last = Davis | first = Hannah E. | authorlink = Hannah Davis | last2 = Assaf | first2 = Gina S. | last3 = McCorkell | first3 = Lisa | last4 = Wei | first4 = Hannah | last5 = Low | first5 = Ryan J. | last6 = Re'em | first6 = Yochai | last7 = Redfield | first7 = Signe | last8 = Austin | first8 = Jared P. | last9 = Akrami | first9 = Athena | date = 2021-07-15 | title = Characterizing long COVID in an international cohort: 7 months of symptoms and their impact|url=https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00299-6/abstract|journal=EClinicalMedicine|language=English|volume=38|issue=|pages=101019|doi=10.1016/j.eclinm.2021.101019|pmc=PMC8280690|pmid=34308300|issn=2589-5370}}</ref> - [https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00299-6/abstract (Abstract)]
*Dec 2020, Long COVID-19: Challenges in the diagnosis and proposed diagnostic criteria<ref name="PMC7737559">{{Cite journal|last = Raveendran | first = A.V. | date = 2021 | title=Long COVID-19: Challenges in the diagnosis and proposed diagnostic criteria|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7737559/|journal=Diabetes & Metabolic Syndrome|volume=15|issue=1|pages=145–146|doi=10.1016/j.dsx.2020.12.025|issn=1871-4021|pmc=7737559|pmid=33341598}}</ref> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7737559/ (Full text)]
*Dec 20, 2020, Patient outcomes after hospitalisation with COVID-19 and implications for follow-up; results from a prospective UK cohort<ref name="Arnold2020b">{{Cite journal | last = Arnold | first = David T. | authorlink = David Arnold | last2 = Hamilton | first2 = Fergus W. | last3 = Milne | first3 = Alice | last4 = Morley | first4 = Anna J. | last5 = Viner | first5 = Jason | last6 = Attwood | first6 = Marie | last7 = Noel | first7 = Alan | last8 = Gunning | first8 = Samuel | last9 = Hatrick | first9 = Jessica | date = 2021-04-01 | title = Patient outcomes after hospitalisation with COVID-19 and implications for follow-up: results from a prospective UK cohort|url=https://thorax.bmj.com/content/76/4/399|journal=Thorax|language=en|volume=76|issue=4 | pages = 399–401|doi=10.1136/thoraxjnl-2020-216086|issn=0040-6376|pmid=33273026}}</ref> - [https://thorax.bmj.com/content/76/4/399 (Full text)] - from the DISCOVER project
*Jan 18, 2021, Will COVID-19 lead to myalgic encephalomyelitis/chronic fatigue syndrome?<ref name="Komaroff2021a">{{Cite journal | last = Komaroff|first = Anthony L. | authorlink = Anthony Komaroff | last2 = Bateman | first2 = Lucinda | authorlink2 = Lucinda Bateman | date = 2021 | title=Will COVID-19 Lead to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?|url=https://www.frontiersin.org/articles/10.3389/fmed.2020.606824/full?s=03|journal=Frontiers in Medicine|language=English|volume=|issue=|pages=|doi=10.3389/fmed.2020.606824|issn=2296-858X|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://www.frontiersin.org/articles/10.3389/fmed.2020.606824/full?s=03 (Full text)]
*Mar 27, 2021, COVID-19 Survivors’ Reports of the Timing, Duration, and Health Impacts of Post-Acute Sequelae of SARS-CoV-2 (PASC) Infection<ref name="Lambert2021a">{{Cite journal|last = Lambert | first = Natalie | authorlink = Natalie Lambert | last2 = Corps | first2 = Survivor | authorlink2 = Survivor Corps | last3 = El-Azab | first3 = Sarah A. | authorlink3 = | last4 = Ramrakhiani | first4 = Nathan S. | authorlink4 = | last5 = Barisano | first5 = Anthony | authorlink5 = | last6 = Yu | first6 = Lu | authorlink6 = | last7 = Taylor | first7 = Kaitlyn | last8 = Esperanca | first8 = Alvaro | last9 = Downs | first9 = Charles A. | date = 2021-03-27 | title = COVID-19 Survivors’ Reports of the Timing, Duration, and Health Impacts of Post-Acute Sequelae of SARS-CoV-2 (PASC) Infection | url = https://www.medrxiv.org/content/10.1101/2021.03.22.21254026v2|journal=medRxiv|language=en|volume=|issue=|pages=2021.03.22.21254026|doi=10.1101/2021.03.22.21254026|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://doi.org/10.1101/2021.03.22.21254026 (Full text)]
*May 11, 2021, Mayo Clinic Proceedings: Post COVID-19 Syndrome (Long Haul Syndrome): Description of a Multidisciplinary Clinic at the Mayo Clinic and Characteristics of the Initial Patient Cohort<ref name="mayo2021a">{{Cite journal | last = Vanichkachorn | first = Greg | last2 = Newcomb | first2 = Richard | last3 = Cowl | first3 = Clayton T. | last4 = Murad | first4 = M. Hassan | last5 = Breeher | first5 = Laura | last6 = Miller | first6 = Sara | last7 = Trenary | first7 = Michael | last8 = Neveau | first8 = Daniel | last9 = Higgins | first9 = Steven | date = 2021-07-01 | title = Post–COVID-19 Syndrome (Long Haul Syndrome): Description of a Multidisciplinary Clinic at Mayo Clinic and Characteristics of the Initial Patient Cohort|url=https://www.mayoclinicproceedings.org/article/S0025-6196(21)00356-6/abstract|journal=Mayo Clinic Proceedings|language=English|volume=96|issue=7|pages=1782–1791|doi=10.1016/j.mayocp.2021.04.024|issn=0025-6196|pmid=34218857}}</ref> - [https://www.mayoclinicproceedings.org/article/S0025-6196(21)00356-6/abstract (Abstract)]
*Jun 7, 2021, Insights from ME/CFS May Help Unravel the Pathogenesis of Post-Acute COVID-19 Syndrome<ref name="Komaroff2021b">{{Cite journal | last = Komaroff|first = Anthony L. | authorlink = Anthony Komaroff | last2 = Lipkin | first2 = W. Ian | authorlink2 = Ian Lipkin | date = 2021-06-07 | title = Insights from myalgic encephalomyelitis/chronic fatigue syndrome may help unravel the pathogenesis of postacute COVID-19 syndrome|url=https://www.cell.com/trends/molecular-medicine/abstract/S1471-4914(21)00134-9|journal=Trends in Molecular Medicine|language=English|volume=|issue=|pages=|doi=10.1016/j.molmed.2021.06.002|issn=1471-4914|pmc=|pmid=34175230|access-date=|quote=|via=}}</ref> - [https://www.cell.com/trends/molecular-medicine/fulltext/S1471-4914(21)00134-9 (Full text)]
*Jun 23, 2021, Long COVID or Post-acute Sequelae of COVID-19 (PASC): An Overview of Biological Factors That May Contribute to Persistent Symptoms<ref name="Proal2021">{{Cite journal | last = Proal|first = Amy D. | authorlink = Amy Proal | last2 = VanElzakker | first2 = Michael B. | authorlink2 = Michael VanElzakker | date = 2021 | title=Long COVID or Post-acute Sequelae of COVID-19 (PASC): An Overview of Biological Factors That May Contribute to Persistent Symptoms|url=https://www.frontiersin.org/articles/10.3389/fmicb.2021.698169/full|journal=Frontiers in Microbiology|language=English|volume=|issue=|pages=|doi=10.3389/fmicb.2021.698169|issn=1664-302X|pmc=8260991|pmid=34248921|access-date=|quote=|via=}}</ref> - [https://doi.org/10.1101/2020.12.24.20248802 (Full text)]
*Oct 2021, A clinical case definition of post COVID-19 condition by a Delphi consensus<ref name="WHO-longcovid-criteria">{{citation | title = A clinical case definition of post COVID-19 condition by a Delphi consensus
| date =Oct 6, 2021 |publisher=[[World Health Organization]] | others = World Health Organization (WHO) clinical case definition working group on post COVID-19 condition | first1 = Joan B. | last1 = Soriano | first2 = Maya | last2 = Allan | first3 = Carine | last3 = Alsokhn | first4 = Nisreen A. | last4 = Alwan | authorlink4 = Nisreen Alwan | first5 = Lisa | last5 = Askie | first6 = Hannah E. | last6 = Davis | authorlink6 = Hannah Davis | first7 = Janet V. | last7 = Diaz | first8 = Tarun | last8 = Dua | first9 = Wouter | last9 = de Groote | first10 = Robert | last10 = Jakob | first11 = Marta | last11 = Lado | first12 = John | last12 = Marshall | first13 = Srin | last13 = Murthy | first14 = Jacobus | last14 = Preller | first15 = Pryanka | last15 = Relan | first16 = Nicoline | last16 = Schiess | first17 = Archana | last17 = Seahwag | ref = WHO reference number: WHO/2019-nCoV/Post_COVID-19_condition/Clinical_case_definition/2021.1 | url = https://www.who.int/publications-detail-redirect/WHO-2019-nCoV-Post_COVID-19_condition-Clinical_case_definition-2021.1}}</ref> [https://www.who.int/publications-detail-redirect/WHO-2019-nCoV-Post_COVID-19_condition-Clinical_case_definition-2021.1 (Full text)]
* Feb 2024, [https://www.nature.com/articles/s41593-024-01576-9 Blood–brain barrier disruption and sustained systemic inflammation in individuals with long COVID-associated cognitive impairment]<ref>{{Cite journal|title=Blood–brain barrier disruption and sustained systemic inflammation in individuals with long COVID-associated cognitive impairment|date=2024-02-22|url=https://www.nature.com/articles/s41593-024-01576-9|journal=Nature Neuroscience|pages=1–12|last=Greene|first=Chris|last2=Connolly|first2=Ruairi|last3=Brennan|first3=Declan|last4=Laffan|first4=Aoife|last5=O’Keeffe|first5=Eoin|last6=Zaporojan|first6=Lilia|last7=O’Callaghan|first7=Jeffrey|last8=Thomson|first8=Bennett|last9=Connolly|first9=Emma|last10=Argue|first10=Ruth|last11=Martin-Loeches|first11=Ignacio|language=en|doi=10.1038/s41593-024-01576-9|issn=1546-1726}}</ref>
::Report including the [[World Health Organization Long COVID diagnostic criteria]]

==Articles and editorials ==
*Jun 15, 2021, White Paper: A Detailed Study of Patients with Long-Haul COVID<ref name="Fairthealth2021">{{Cite web|url=https://s3.amazonaws.com/media2.fairhealth.org/whitepaper/asset/A%20Detailed%20Study%20of%20Patients%20with%20Long-Haul%20COVID--An%20Analysis%20of%20Private%20Healthcare%20Claims--A%20FAIR%20Health%20White%20Paper.pdf | publisher=FAIR Health | date = Jun 18, 2020 | title = A Detailed Study of Patients with Long-Haul COVID: An Analysis of Private Healthcare Claims. A FAIR Health White Paper}}</ref> [https://s3.amazonaws.com/media2.fairhealth.org/whitepaper/asset/A%20Detailed%20Study%20of%20Patients%20with%20Long-Haul%20COVID--An%20Analysis%20of%20Private%20Healthcare%20Claims--A%20FAIR%20Health%20White%20Paper.pdf (Full text)]
*Jun 24, 2021, Covid-19: Third of people infected have long term symptoms<ref name="ODowd2021">{{Cite journal|last = O'Dowd | first = Adrian | date = 2021-06-24 | title = Covid-19: Third of people infected have long term symptoms|url=https://www.bmj.com/content/373/bmj.n1626|journal=BMJ|language=en|volume=373|pages=n1626|doi=10.1136/bmj.n1626|issn=1756-1833|pmid=34168002}}</ref> [https://www.bmj.com/content/373/bmj.n1626 (Editorial)]

==Presentations, interviews and videos==
*Aug 2020, [https://solvecfs.org/wp-content/uploads/2020/08/Post-COVID%20ME-to%20Solve.pdf Will Covid-19 lead to ME/CFS in some people?] - presentation - Dr [[Anthony Komaroff]]
*Jul 2020, [https://www.youtube.com/watch?v=IIeOoS_A4c8 Message in a Bottle] video - [[LongCovidSOS]]
*Jun 2020, [https://www.biomax.com/lib/press-releases/Initial-Result-Announcment_English.pdf Health of Corona Patients at Home in Alarmingly Poor Health Even After Several Months - Dutch Lung Foundation] - Press release (English translation) - [https://www.ad.nl/binnenland/longfonds-gezondheid-thuiszittende-coronapatienten-schrikbarend-slecht~a45346fe/ Dutch]

==Letters and blogs==
*May 2020, [http://somatosphere.net/2020/mild-covid.html/ Very, very mild: Covid-19 symptoms and illness classification] - [[Felicity Callard]]
*Jul 2020, [https://meassociation.org.uk/wp-content/uploads/ForwardME-Letter-re-Covid-19-Management-and-Exercise-Caution-27.08.20.pdf Letter re Covid-19 Management and Exercise Caution]<ref name="GETcovidForwardME">{{Cite web|url=https://meassociation.org.uk/wp-content/uploads/ForwardME-Letter-re-Covid-19-Management-and-Exercise-Caution-27.08.20.pdf | date = 2020-08-27 | last = Forward-ME | authorlink = Forward-ME| title = Letter re Covid-19 Management and Exercise Caution}}</ref> - [[Forward-ME]]
*Sep 2020, [https://mecfsresearchreview.me/2020/09/17/understanding-long-covid-a-shortcut-to-solving-me-cfs/?#symptoms Understanding Long Covid, A Shortcut to Solving ME/CFS?] - [[Simon McGrath]]
*Sep 2020, [https://wellcomeopenresearch.org/articles/5-224 Why the Patient-Made Term 'Long Covid' is needed] - Open Letter
*Oct 2020, [https://blogs.bmj.com/bmj/2020/10/01/why-we-need-to-keep-using-the-patient-made-term-long-covid/ Why we need to keep using the patient made term “Long Covid”] - [[The BMJ]]
*Jan 2021, [https://directorsblog.nih.gov/tag/post-acute-sequelae-of-covid-19/ Trying to Make Sense of Long COVID Syndrome] - Dr. Francis Collins, CDC director

==National and international health bodies==
*[https://doi.org/10.1136/bmj.m2912 NICE cautions against using graded exercise therapy for patients recovering from COVID-19]<ref name="NICEcautionBMJ">{{Cite journal | last = Torjesen | first = Ingrid | date = 2020-07-21 | title = NICE cautions against using graded exercise therapy for patients recovering from covid-19|url=https://www.bmj.com/content/370/bmj.m2912|journal=The BMJ|language=en|volume=370|doi=10.1136/bmj.m2912|issn=1756-1833|pmid=32694164}}</ref>

==News articles ==
* Feb 2024, [https://www.nature.com/articles/s41593-024-01576-9 Blood–brain barrier disruption and sustained systemic inflammation in individuals with long COVID-associated cognitive impairment]
* Oct 2020, [https://www.theguardian.com/world/2020/oct/21/women-aged-50-60-at-greatest-risk-of-long-covid-experts-suggest Women aged 50-60 at greatest risk of ‘long Covid’, experts suggest] - The Guardian

* Oct 2020, [https://www.wsj.com/articles/these-doctors-have-long-term-covid-now-theyre-pushing-for-better-care-11603144474 These Doctors Have Long-Term Covid. Now They’re Pushing for Better Care.] - Wall Street Journal
* Oct 2020, [https://time.com/5897992/long-haul-coronavirus-me-cfs/ Have We Been Thinking About Long-Haul Coronavirus All Wrong?] - Time
* Oct 2020, [https://www.nihr.ac.uk/news/living-with-covid-nihr-publishes-dynamic-themed-review-into-ongoing-covid/25891 Living with COVID: NIHR publishes dynamic-themed review into 'ongoing COVID'] - National Institute of Health Research
* Oct 2020, [https://www.theguardian.com/world/2020/oct/04/long-covid-the-evidence-of-lingering-heart-damage Long Covid: the evidence of lingering heart damage] - The Observer
* Sep 2020, [https://www.bbc.co.uk/news/uk-england-leicestershire-54106073 Coronavirus patient unable to work six months on] - BBC News
* Aug 2020, [https://www.huffingtonpost.co.uk/entry/long-term-symptoms-of-covid-19-identified-in-study-of-hospital-patients_uk_5f2bc0f6c5b64d7a55eefcfa The Most Common Long-Term Symptoms Of Covid-19] - HuffPost UK
* Aug 2022, [https://www.nature.com/articles/d41586-022-02140-w Long-COVID treatments: why the world is still waitin] - Nature
* Aug 2022, [https://www.statnews.com/2022/08/19/long-covid-plan-good-start-needs-to-go-further/ Biden’s long Covid plan is a good start. But it needs to go further] - Ryan Prior and Kimberly Knackstedt, Stat News
* Aug 2022, [https://www.latimes.com/opinion/story/2022-08-21/long-covid-treatment-research Op-Ed: We're starting to understand long COVID. Next we can fight it]
* Jul 2020, [https://www.sciencemag.org/news/2020/07/brain-fog-heart-damage-covid-19-s-lingering-problems-alarm-scientists From ‘brain fog’ to heart damage, COVID-19’s lingering problems alarm scientists] - Science Mag

==Articles for journalists covering Long COVID ==
* [https://www.cjr.org/covering_the_pandemic/how-to-cover-covid-19-patients-sensitively.php How to cover COVID-19 patients sensitively] - Fiona Lowenstein, Columbia Journalism Review
*[https://www.wearebodypolitic.com/bodytype/2021/7/6/long-covid-guide Body Politic's Comprehensive Guide to Covering Long COVID] - Fiona Lowenstein
*[https://centerforhealthjournalism.org/resources/lessons/what-reporters-need-know-when-covering-long-covid Long COVID coverage often falls short, but here's how reporters can do better] - Fiona Lowenstein, Center for Health Journalism
*2021, [https://www.theopennotebook.com/2021/01/26/how-to-report-with-accuracy-and-sensitivity-on-contested-illnesses/ How to Report with Accuracy and Sensitivity on Contested Illnesses] - Julie Rehmeyer, Open Notebook

==See also==
*[[List of famous people with long COVID]]
*[[List of open letters about long COVID]]
*[[Post-COVID-19 illness]]
*[[COVID-19]] coronavirus disease 19
*[[Myalgic encephalomyelitis|Myalgic encephalomyelitis and chronic fatigue syndrome]]
*[[Postviral fatigue syndrome]]
*[[Post-Ebola syndrome]]
*[[Encephalitis lethargica]]
*[[Paul Garner]]
*[[Nisreen Alwan]]
*[[Blood-brain barrier]]

==Learn more==
*[https://www.gov.uk/government/publications/covid-19-long-term-health-effects/covid-19-long-term-health-effects COVID-19 Long Term Health Effects]
*[https://www.bmj.com/sites/default/files/infographics/1353078336/static-infographic/background.png Infographic: "Long covid" in primary care] - BMJ journal
* List of long COVID studies (draft) - [[MEAction|#MEAction]]

==References==
{{reflist}}

[[Category:Potential comorbidities]]
[[Category:Diagnoses]]
[[Category:Long COVID]]

Viral testing in ME/CFS

2025-10-14T23:25:20Z

Yakov:/* Epstein-Barr virus testing */ Add mention that it was Fukuda critera

The viruses most commonly found in myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) patients as chronic infections are the two enteroviruses [[Coxsackie B virus|coxsackievirus B]] and [[echovirus]]; the three herpesviruses [[Epstein-Barr virus]], [[HHV-6]] and [[cytomegalovirus]]; and the coronavirus [[SARS-CoV-2]]. These are the infections that ME/CFS doctors will typically test for. Usually ME/CFS patients will have chronic infections with one or more of these viruses.

More rarely, ME/CFS may involve chronic infections with the following viruses, bacteria and protozoa: [[varicella zoster virus]], [[parvovirus B19]], [[Chlamydia pneumoniae]], [[Human herpesvirus 7|HHV-7]], [[Coxiella burnetii]], [[Giardia|Giardia lamblia]], [[Ross River virus]] and [[West Nile virus]].

ME/CFS doctors normally employ antibody tests (which measure the immune response to the infection) in order to detect these chronic infections, rather than PCR blood tests (which directly detect the presence of the pathogen in the blood). This is because in ME/CFS, infections may be widespread in the body tissues (and so may elicit an antibody response), but usually very little virus is found in the blood; thus PCR blood tests will often come back negative, even though there may be an ongoing low-level infection in the tissues.

Certainly enterovirus is commonly found in the tissues of ME/CFS patients, as [[List of enterovirus infection studies|numerous studies]] have directly detected this virus in muscle, stomach and brain tissue biopsies (whereas the [[Non-cytolytic enterovirus#Detection of non-cytolytic infections|levels of enterovirus in the blood are so low]] that the virus often cannot be detected by blood PCR). Unfortunately there has been less interest in looking for herpesviruses in ME/CFS patient tissues; so although chronically high antibody levels to enteroviruses and/or herpesviruses are often found in ME/CFS, the bodily locations of the herpesvirus infections that may be eliciting this antibody response are less clear.

The enterovirus infections found in ME/CFS are proven to involve the [[Non-cytolytic enterovirus|non-cytolytic form of this virus]], rather than just the productive form. Non-cytolytic enterovirus lives inside host cells on a long-term basis, as an intracellular infection of naked viral RNA which does not kill the cell. Similarly, one theory postulates the herpesvirus infections found in ME/CFS could involve an [[Abortive infection theory of ME/CFS|abortive form of herpesvirus]] (which has some commonalities to non-cytolytic infection), rather than just regular productive or latent/reactivated virus.

Note that ME/CFS doctors may interpret antibody results differently to regular infectious disease specialists: the latter tend to ignore chronic highly elevated IgG, dismissing this as just evidence of a past and now dormant infection (provided IgM is low); whereas ME/CFS doctors may view chronic highly elevated IgG as evidence of an ongoing low-level infection in the body tissues.

In the following sections, the testing protocols employed by leading ME/CFS doctors are detailed for each ME/CFS-associated virus and bacterium.
===== Coxsackievirus B and echovirus testing =====
[[Coxsackie B virus|Coxsackievirus B]] and [[echovirus]] have been linked to ME/CFS in [[List of enterovirus infection studies|over 30 studies]]. There are 6 coxsackievirus B (CVB) serotypes and 32 echovirus (EV) serotypes. All are part of the [[enterovirus]] genus. Enterovirus expert [[John Chia|Dr John Chia]] says that the most common enterovirus serotypes found in his ME/CFS patients are CVB3 and CVB4 first and foremost, then CVB2, EV6, EV7 and EV9, and then much less EV11.<ref>{{Cite web|url=http://quixoticmeblog.blogspot.com/2014/10/dr-c-recommends-new-treatment-plan.html|title=Quixotic: My M.E. Blog: Dr. C Recommends New Treatment Plan|last=Calvin|first=Patrick W.|date=2014-10-12|website=Quixotic|access-date=2024-05-17}}</ref>

Testing for these enteroviruses presents some difficulties, as in ME/CFS, there are hardly any viruses in the blood. Rather the virus is mainly found as a chronic low-level [[Non-cytolytic enterovirus|non-cytolytic infection]] in tissue areas such as the stomach, muscles and brain. Dr Chia finds in whole blood samples, sensitive reverse transcription PCR blood tests are positive only about 30% of the time in patients with enterovirus ME/CFS.<ref>{{Cite web|url=https://me-pedia.org/wiki/Non-cytolytic_enterovirus#Detection_of_non-cytolytic_infections|title=Non-cytolytic enterovirus}}</ref>

So antibody tests are used to detect enterovirus in ME/CFS patients rather than blood PCR tests. However, Dr Chia found that tests using the [[wikipedia:Plaque_reduction_neutralization_test|neutralisation]] method of antibody measurement can more reliably detect the chronic low-level enterovirus infections found in ME/CFS, compared to other antibody measurement techniques such as CFT, ELISA and IFA, which may not be sensitive enough (these techniques are fine for acute enterovirus infections, where there is plenty of virus, but detecting low-level chronic infections requires a test with more sensitivity). The CFT test is particularly insensitive for chronic infections.<ref>{{Cite web|url=https://www.youtube.com/watch?v=YSgcNSqssTI&t=27m54s|title=Invest in ME Conference 2009, Dr John Chia's Presentation|last=Chia|first=John|at=Timecode 27m 54s|quote=The typical antibody that the laboratory would do is called the complement fixation test, which is neither sensitive nor specific. That means if you get a positive test, it's worthless. And if you get a negative test, it's worthless. Well that's wonderful.}}</ref> Antibody tests via the neutralisation method however are only offered in a small number of pathology labs worldwide.

For his own ME/CFS patients, Dr Chia uses the ARUP Lab micro-neutralisation [https://ltd.aruplab.com/Tests/Pub/0060055 tests for coxsackievirus B] and [https://ltd.aruplab.com/Tests/Pub/0060053 echovirus]. These are the tests recommended for testing chronic infections by the [https://www.enterovirusfoundation.org/treatments-1/ Enterovirus Foundation]. Antibody titers of '''1:160''' to '''1:320''' and higher in the ARUP tests are good indicators of chronic infection, Dr Chia found.<ref>{{Cite web|url=https://www.enterovirusfoundation.org/treatments-1|title=Diagnose & Treat|website=Enterovirus Foundation|language=en-US|access-date=2024-05-17}}</ref> In [https://www.youtube.com/watch?v=Xz7CaxWtCUU&t=10m34s this video], Dr Chia explains how he calibrated the ARUP Lab tests to derive this 1:160 to 1:320 threshold for ME/CFS usage.<ref>{{Cite web|url=https://www.youtube.com/watch?v=Xz7CaxWtCUU&t=10m34s|title=The International Symposium on Viruses In Chronic Fatigue Syndrome and Post-Viral Fatigue. June 2008, Baltimore, Maryland, USA.|last=Chia|first=John|date=June 2008|at=Timecode 10m 34s}}</ref> Note that in such neutralisation tests, the levels of IgM and IgG antibodies are usually pooled together, so the test result reflects the combined IgM + IgG antibody level.

Other pathology labs which offer coxsackievirus B or echovirus neutralisation tests include: [https://kgu.de Institute of Medical Virology], University Hospital Frankfurt am Main, Germany; [https://www.pasteur.gr/en Hellenic Pasteur Institute] in Greece, [https://torlak.rs/en/serological-diagnosis/ Torlak Institute of Virology] in Serbia, and [https://www.fleury.com.br/medico/exames/coxsackie-b-anticorpos-soro Fleury Lab] in Sao Paulo, Brazil.

===== Epstein-Barr virus testing =====
[[Epstein-Barr virus]] (EBV) has been linked to ME/CFS in [https://me-pedia.org/wiki/List_of_herpesvirus_infection_studies many studies]. There is a high 95% prevalence of EBV in the general adult population,<ref>{{Cite journal|title=Epidemiology of Epstein-Barr virus infection and infectious mononucleosis in the United Kingdom|date=2020-06-12|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7291753/|journal=BMC Public Health|volume=20|pages=912|last=Kuri|first=Ashvin|last2=Jacobs|first2=Benjamin Meir|last3=Vickaryous|first3=Nikki|last4=Pakpoor|first4=Julia|last5=Middeldorp|first5=Jaap|last6=Giovannoni|first6=Gavin|last7=Dobson|first7=Ruth|doi=10.1186/s12889-020-09049-x|pmc=7291753|pmid=32532296|issn=1471-2458}}</ref> so most adults will have this virus in their system, but usually in a latent (inactive) state. However, in ME/CFS patients this virus may exist in a reactivated state.

After [[mononucleosis]] (glandular fever), which is mostly caused by EBV, ME/CFS was found as a sequelae in 9% of cases.<ref>{{Cite journal|title=Incidence, risk and prognosis of acute and chronic fatigue syndromes and psychiatric disorders after glandular fever|date=1998-12|url=https://pubmed.ncbi.nlm.nih.gov/9926075/|journal=The British Journal of Psychiatry: The Journal of Mental Science|volume=173|pages=475–481|last=White|first=P. D.|last2=Thomas|first2=J. M.|last3=Amess|first3=J.|last4=Crawford|first4=D. H.|last5=Grover|first5=S. A.|last6=Kangro|first6=H. O.|last7=Clare|first7=A. W.|doi=10.1192/bjp.173.6.475|pmid=9926075|issn=0007-1250}}</ref> Another study found that at 6, 12 and 24 months after mononucleosis, 13%, 7% and 4% of patients respectively met the [[Fukuda criteria]] for CFS,<ref>{{Cite journal|title=Chronic fatigue syndrome after infectious mononucleosis in adolescents|date=2009-07|url=https://pubmed.ncbi.nlm.nih.gov/19564299/|journal=Pediatrics|volume=124|issue=1|pages=189–193|last=Katz|first=Ben Z.|last2=Shiraishi|first2=Yukiko|last3=Mears|first3=Cynthia J.|last4=Binns|first4=Helen J.|last5=Taylor|first5=Renee|doi=10.1542/peds.2008-1879|pmc=2756827|pmid=19564299|issn=1098-4275}}</ref> indicating that in the first year or so, post-mononucleosis ME/CFS can clear up over time in some individuals, though it becomes a permanent illness in others.

[[A Martin Lerner|Dr Martin Lerner]] asserts that ME/CFS patients have a chronic EBV infection if there are high antibody levels in the EBV '''VCA IgM''' and/or '''EA IgG diffuse''' tests;<ref name=":0">{{Cite journal|title=Subset-directed antiviral treatment of 142 herpesvirus patients with chronic fatigue syndrome|date=2010-05-24|url=https://www.dovepress.com/subset-directed-antiviral-treatment-of-142-herpesvirus-patients-with-c-peer-reviewed-fulltext-article-VAAT|journal=Virus Adaptation and Treatment|volume=2|pages=47–57|last=Lerner|first=A. Martin|last2=Beqaj|first2=Safedin|last3=Fitzgerald|first3=James T.|last4=Gill|first4=Ken|last5=Gill|first5=Carol|last6=Edington|first6=James|language=English|doi=10.2147/VAAT.S10695}}</ref> a study<ref>{{Cite journal|title=Investigation of Long COVID Prevalence and Its Relationship to Epstein-Barr Virus Reactivation|date=2021-06-17|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8233978/|journal=Pathogens|volume=10|issue=6|pages=763|last=Gold|first=Jeffrey E.|last2=Okyay|first2=Ramazan A.|last3=Licht|first3=Warren E.|last4=Hurley|first4=David J.|doi=10.3390/pathogens10060763|pmc=8233978|pmid=34204243|issn=2076-0817}}</ref> confirms that high antibody levels in either of these tests indicates EBV reactivation. Note that: EA = early antigen; VCA = virus capsid antigen (also denoted by CA), EBNA = Epstein-Barr nuclear antigen.

Note that the chronic EBV infections thought to exist in ME/CFS are not the same as those found in the rare and often fatal illness chronic active Epstein-Barr virus (CAEBV). In CAEBV, high EBV viral loads are found in the blood by PCR, whereas in ME/CFS, blood PCR tests are often negative for EBV.

===== HHV-6 testing =====
[[Human herpesvirus 6|Human herpes virus 6]] (HHV-6) has been linked to ME/CFS in [https://me-pedia.org/wiki/List_of_herpesvirus_infection_studies many studies]. HHV-6 is found in nearly 100% of adults, normally in a latent (inactive) state. However, ME/CFS patients may have a reactivated HHV-6 infection. Dr Martin Lerner asserts that if ME/CFS patients have both high HHV-6 '''IgM''' antibodies and high HHV-6 '''IgG''' antibodies, that indicates a reactivated HHV-6.<ref name=":0" /> The HHV-6 Foundation state that in an IFA antibody test, if HHV-6 '''IgG''' is highly elevated relative to healthy controls, it indicates a recent infection or a smoldering chronic reactivated infection.<ref>{{Cite web|url=https://hhv-6foundation.org/patients/hhv-6-testing-for-patients|title=HHV-6A/B Testing {{!}} HHV-6 Foundation {{!}} HHV-6 Disease Information for Patients, Clinicians, and Researchers {{!}} Apply for a Grant|website=hhv-6foundation.org|access-date=2024-05-17}}</ref>

===== Cytomegalovirus testing =====
[[Cytomegalovirus]] (CMV) has been linked to ME/CFS in [https://me-pedia.org/wiki/List_of_herpesvirus_infection_studies many studies]. CMV is found in around 58% of adults in the US,<ref>{{Cite journal|title=National prevalence estimates for cytomegalovirus IgM and IgG avidity and association between high IgM antibody titer and low IgG avidity|date=2011-11|url=https://pubmed.ncbi.nlm.nih.gov/21918114/|journal=Clinical and vaccine immunology: CVI|volume=18|issue=11|pages=1895–1899|last=Dollard|first=Sheila C.|last2=Staras|first2=Stephanie A. S.|last3=Amin|first3=Minal M.|last4=Schmid|first4=D. Scott|last5=Cannon|first5=Michael J.|doi=10.1128/CVI.05228-11|pmc=3209034|pmid=21918114|issn=1556-679X}}</ref> normally in a latent inactive state. But ME/CFS patients may have a reactivated CMV infection. Dr Martin Lerner states that high levels of CMV '''IgG''' antibodies indicate a reactivated infection in ME/CFS. Dr Lerner says testing CMV '''IgM''' levels has no relevance in ME/CFS.<ref>{{Cite web|url=http://web.archive.org/web/20190929163222/http://www.treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf|title=ME/CFS Treatment Resource Guide for Practitioners|last=Lerner|first=A. Martin|quote=A diagnosis of cytomegalovirus (CMV) infection is made with an elevated CMV IgG titer. The IgM titer for CMV is inaccurate and insensitive. The higher the CMV IgG titer, the greater the viral load.}}</ref>

===== SARS-CoV-2 testing =====
Since the COVID pandemic, the [[SARS-CoV-2]] coronavirus has become a new addition to the set of viruses linked to ME/CFS.<ref>{{Cite journal|title=Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER-Adult Study|date=2025-01-13|url=https://pubmed.ncbi.nlm.nih.gov/39804551/|journal=Journal of General Internal Medicine|last=Vernon|first=Suzanne D.|last2=Zheng|first2=Tianyu|last3=Do|first3=Hyungrok|last4=Marconi|first4=Vincent C.|last5=Jason|first5=Leonard A.|last6=Singer|first6=Nora G.|last7=Natelson|first7=Benjamin H.|last8=Sherif|first8=Zaki A.|last9=Bonilla|first9=Hector Fabio|last10=Taylor|first10=Emily|last11=Mullington|first11=Janet M.|doi=10.1007/s11606-024-09290-9|pmid=39804551|issn=1525-1497}}</ref> But no blood testing protocols for SARS-CoV-2 have yet been validated by ME/CFS researchers as a means to associate this virus to ME/CFS patients. However, patients whose ME/CFS appeared immediately after an acute COVID infection (as detected by a COVID lateral flow test or COVID PCR) will naturally assume their illness was triggered by SARS-CoV-2.

===== Varicella zoster virus testing =====
[[Varicella zoster virus]] (VZV) is found in 63% to 100% of the population.<ref>{{Cite journal|title=Varicella zoster virus latency|date=2011-3|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3118253/|journal=Future virology|volume=6|issue=3|pages=341–355|last=Eshleman|first=Emily|last2=Shahzad|first2=Aamir|last3=Cohrs|first3=Randall J|pmc=3118253|pmid=21695042|issn=1746-0794}}</ref> VZV causes [[chickenpox]], and VZV can reactivate later in life to cause [[shingles]], a painful or itchy skin rash. Dr John Chia finds a very small percentage of ME/CFS cases are due to reactivated VZV, and this type of ME/CFS can be treated easily with antiviral drugs such as [[acyclovir]], which improve the ME/CFS after just a few weeks.<ref>{{Cite web|url=https://www.youtube.com/supported_browsers?next_url=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DNhU-G0loqtY&t=6m58s|title=MECFS Alert Episode 38 - Interview with Dr. John Chia, Part 1|website=www.youtube.com|at=Timecode 6m 58s|access-date=2024-05-17}}</ref>

The shingles rash caused by VZV is distinctive enough on its own to make a diagnosis of VZV reactivation. Even the appearance of just one or two shingles blisters can indicate VZV reactivation. '''PCR''' testing of the shingles blister contents can confirm VZV reactivation, if confirmation is needed.<ref>{{Cite web|url=https://www.cdc.gov/chickenpox/php/laboratories/index.html|title=Laboratory Testing for Varicella-Zoster Virus (VZV)|last=CDC|date=2024-05-10|website=Chickenpox (Varicella)|language=en-us|access-date=2024-05-18}}</ref>

VZV usually lives in a latent state in the nerve ganglia, but when it reactivates it typically leads to shingles; it has been hypothesized VZV reactivation in the nerve ganglia may cause ME/CFS.<ref>{{Cite journal|title=Does varicella-zoster virus infection of the peripheral ganglia cause Chronic Fatigue Syndrome?|date=2009-11|url=https://pubmed.ncbi.nlm.nih.gov/19520522/|journal=Medical Hypotheses|volume=73|issue=5|pages=728–734|last=Shapiro|first=Judith S.|doi=10.1016/j.mehy.2009.04.043|pmid=19520522|issn=1532-2777}}</ref>

===== Parvovirus B19 testing =====
[[Parvovirus B19]] is a rarer cause of ME/CFS.<ref>{{Cite journal|title=Chronic fatigue syndrome and arthralgia following parvovirus B19 infection|date=2002-03|url=https://pubmed.ncbi.nlm.nih.gov/11911112/|journal=The Journal of Rheumatology|volume=29|issue=3|pages=595–602|last=Kerr|first=Jonathan R.|last2=Bracewell|first2=Janice|last3=Laing|first3=Ian|last4=Mattey|first4=Derek L.|last5=Bernstein|first5=Robert M.|last6=Bruce|first6=Ian N.|last7=Tyrrell|first7=David A. J.|pmid=11911112|issn=0315-162X}}</ref><ref>{{Cite journal|title=Antibody to parvovirus B19 nonstructural protein is associated with chronic arthralgia in patients with chronic fatigue syndrome/myalgic encephalomyelitis|date=2010-04|url=https://pubmed.ncbi.nlm.nih.gov/20007355/|journal=The Journal of General Virology|volume=91|issue=Pt 4|pages=893–897|last=Kerr|first=Jonathan R.|last2=Gough|first2=John|last3=Richards|first3=Selwyn C. M.|last4=Main|first4=Janice|last5=Enlander|first5=Derek|last6=McCreary|first6=Michelle|last7=Komaroff|first7=Anthony L.|last8=Chia|first8=John K.|doi=10.1099/vir.0.017590-0|pmid=20007355|issn=1465-2099}}</ref> This virus is found in 61% of adults,<ref>{{Cite journal|title=The prevalence of antibody to parvovirus B19 in hemophiliacs and in the general population|date=1996-07|url=https://pubmed.ncbi.nlm.nih.gov/8837383/|journal=Zentralblatt Fur Bakteriologie: International Journal of Medical Microbiology|volume=284|issue=2-3|pages=232–240|last=Eis-Hübinger|first=A. M.|last2=Oldenburg|first2=J.|last3=Brackmann|first3=H. H.|last4=Matz|first4=B.|last5=Schneweis|first5=K. E.|doi=10.1016/s0934-8840(96)80098-3|pmid=8837383|issn=0934-8840}}</ref> normally in a latent (inactive) state. But ME/CFS due to parvovirus B19 involves an active infection. Dr John Chia diagnoses active parvovirus B19 infection when the '''PCR''' test is positive, or when there are high '''IgM''' antibodies.<ref>{{Cite journal|title=Diverse Etiologies for Chronic Fatigue Syndrome|date=1 March 2003|url=https://academic.oup.com/cid/article-pdf/36/5/671/1244019/36-5-671.pdf|journal=Clinical Infectious Diseases|volume=36|pages=671|last=Chia|first=John|last2=Chia|first2=Andrew}}</ref>

Note that an acute parvovirus B19 infection can cause false positive IgM antibody test results with blood tests for Epstein-Barr virus, cytomegalovirus, HHV-6, herpes simplex and Borrelia burgdorferi and others.<ref>{{Cite journal|title=Acute parvovirus B19 infection frequently causes false-positive results in Epstein-Barr virus- and herpes simplex virus-specific immunoglobulin M determinations done on the Liaison platform|date=2009-03|url=https://pubmed.ncbi.nlm.nih.gov/19116304/|journal=Clinical and vaccine immunology: CVI|volume=16|issue=3|pages=372–375|last=Berth|first=Mario|last2=Bosmans|first2=Eugene|doi=10.1128/CVI.00380-08|pmc=2650871|pmid=19116304|issn=1556-679X}}</ref><ref>{{Cite journal|title=False-Positive Results for Immunoglobulin M Serologic Results: Explanations and Examples|date=2013-03|url=https://pubmed.ncbi.nlm.nih.gov/26619450/|journal=Journal of the Pediatric Infectious Diseases Society|volume=2|issue=1|pages=87–90|last=Woods|first=Charles R.|doi=10.1093/jpids/pis133|pmid=26619450|issn=2048-7193}}</ref> This is because parvovirus B19 IgM antibodies cross-react with the IgM antibodies of these other pathogens.

===== Chlamydia pneumoniae testing =====
Dr John Chia finds the intracellular bacterium [[Chlamydia pneumoniae]] is an uncommon but treatable cause of ME/CFS, and says that most ME/CFS patients with active Chlamydia pneumoniae will have high '''IgG''' antibody levels, with IgM being negative; however some patients with this infection will have low IgG levels. Thus low IgG levels do not necessarily mean you do not have active Chlamydia pneumoniae.<ref>{{Cite journal|title=Chronic Chlamydia pneumoniae Infection: A Treatable Cause of Chronic Fatigue Syndrome|date=August 1999|url=https://cid.oxfordjournals.org/content/29/2/452.full.pdf|journal=Clinical Infectious Diseases|volume=29|last=Chia|first=John}}</ref>

74% of adults have antibodies to Chlamydia pneumoniae, and about 10% of adults have a persistent active infection, according to an Israeli study.<ref>{{Cite journal|title=Prevalence of antibodies to Chlamydia pneumoniae in an Israeli population without clinical evidence of respiratory infection|date=2002-05|url=https://pubmed.ncbi.nlm.nih.gov/11986341/|journal=Journal of Clinical Pathology|volume=55|issue=5|pages=355–358|last=Ben-Yaakov|first=M.|last2=Eshel|first2=G.|last3=Zaksonski|first3=L.|last4=Lazarovich|first4=Z.|last5=Boldur|first5=I.|doi=10.1136/jcp.55.5.355|pmc=1769655|pmid=11986341|issn=0021-9746}}</ref>

=== Incubation periods ===
If the incubation period of the ME/CFS-triggering virus is known, this information can help identify the virus. The incubation period is the time between the initial exposure to the virus, and the appearance of its first acute symptoms (such as a sore throat, gastrointestinal upset or flu-like illness). Some ME/CFS patients may known where and when they contracted their virus, and in these cases, the incubation period may be calculated.
{| class="wikitable"
|+Incubation periods
!Pathogen
!Incubation period
!Ref
|-
|Coxsackievirus B
|2 to 6 days
|<ref>{{Cite journal|title=Coxsackie B virus|date=2024-03-07|url=https://en.wikipedia.org/w/index.php?title=Coxsackie_B_virus&oldid=1212347398|journal=Wikipedia|language=en}}</ref>
|-
|Echovirus
|2 to 10 days
|<ref>{{Cite web|url=https://www.canada.ca/en/public-health/services/laboratory-biosafety-biosecurity/pathogen-safety-data-sheets-risk-assessment/echovirus-pathogen-safety-data-sheet.html|title=Pathogen Safety Data Sheets: Infectious Substances – Echovirus|last=Canada|first=Public Health Agency of|date=2001-09-17|website=www.canada.ca|access-date=2024-06-19}}</ref>
|-
|Epstein-Barr virus
|4 to 6 weeks
|<ref>{{Cite web|url=https://emedicine.medscape.com/article/222040-clinical|title=Epstein-Barr Virus (EBV) Infectious Mononucleosis (Mono) Clinical Presentation: History, Causes, Physical Examination|website=emedicine.medscape.com|access-date=2024-06-19}}</ref>
|-
|Cytomegalovirus
|4 to 6 weeks
|<ref>{{Cite journal|title=Acute Cytomegalovirus (CMV) Hepatitis in an Immunocompetent Adult|date=2020-07-16|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7387041/|journal=The American Journal of Case Reports|volume=21|pages=e925495–1–e925495-5|last=Zahid|first=Maleeha|last2=Ali|first2=Nisha|last3=Saad|first3=Muhammad|last4=Kelly|first4=Paul|last5=Ortiz|first5=Alfonso|doi=10.12659/AJCR.925495|pmc=7387041|pmid=32673293|issn=1941-5923}}</ref>
|-
|HHV-6
|1 to 2 weeks
|<ref>{{Cite journal|title=Update on Human Herpesvirus 6 Biology, Clinical Features, and Therapy|date=2005-1|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC544175/|journal=Clinical Microbiology Reviews|volume=18|issue=1|pages=217–245|last=De Bolle|first=Leen|last2=Naesens|first2=Lieve|last3=De Clercq|first3=Erik|doi=10.1128/CMR.18.1.217-245.2005|pmc=544175|pmid=15653828|issn=0893-8512}}</ref>
|}
Note that HHV-6 is is almost always acquired during infancy, and is present in almost 100% of adults.

=== Learn more ===
[https://mecfsroadmap.altervista.org/#first-round-tests Viral testing section] of the [https://mecfsroadmap.altervista.org ME/CFS Roadmap for Testing and Treatment].

=== See also ===

* [[Enterovirus]]
* [[Non-cytolytic enterovirus]]
* [[Coxsackie B virus|Coxsackievirus B]]
* [[Echovirus]]
* [[John Chia|Dr John Chia]]
* [[List of enterovirus infection studies]]
* [[Epstein-Barr virus]]
* [[Human herpesvirus 6|HHV-6]]
* [[Cytomegalovirus]]
* [[List of herpesvirus infection studies]]
* [[Severe acute respiratory syndrome coronavirus 2|SARS-CoV-2]]
* [[Varicella zoster virus]]
* [[Parvovirus B19]]
* [[Chlamydia pneumoniae]]

=== References ===

Epstein-Barr virus

2025-10-14T22:43:09Z

Yakov:/* Chronic fatigue syndrome */ Mention that CFS was defined by fukuda critera

The '''Epstein-Barr virus''' or '''EBV''' or Human '''Herpesvirus 4''' or '''HHV-4''' is a [[herpesvirus]].<ref name="CDC" /> It is the most common cause of infectious [[mononucleosis]] or "glandular fever," and infects 90% of adults worldwide.<ref name="Saha2016">{{Cite journal | last1 = Saha | first1 = Abhik | last2 = Robertson | first2 = Erle S | title = Epstein-Barr Virus–Associated B-cell Lymphomas: Pathogenesis and Clinical Outcomes | journal =Clinical Cancer Research
| issn = 1557-3265| volume = 17 | issue = 10| pages = 3056–3063 | date = 2011-05-15 | pmid = 21372216 | doi = 10.1158/1078-0432.CCR-10-2578| url = http://clincancerres.aacrjournals.org/content/17/10/3056}}</ref> It has been implicated in numerous immune diseases and chronic illnesses, including [[chronic fatigue syndrome]], [[multiple sclerosis]], [[myasthenia gravis]], and [[systemic lupus erythematosus]]. It is known to turn on "risk genes" for autoimmune disease in the cells it infects.<ref name="Harley2018">{{Cite journal | title = Transcription factors operate across disease loci, with EBNA2 implicated in autoimmunity | date = 2018| url = https://www.nature.com/articles/s41588-018-0102-3|journal=Nature Genetics|volume=50|issue=5 | pages = 699–707 | last = Harley | first = John B. | authorlink = | last2 = Chen | first2 = Xiaoting | authorlink2 = | last3 = Pujato | first3 = Mario | authorlink3 = | last4 = Miller | first4 = Daniel | authorlink4 = | last5 = Maddox | first5 = Avery | authorlink5 = | last6 = Forney | first6 = Carmy | authorlink6 = | last7 = Magnusen | first7 = Albert F. | last8 = Lynch | first8 = Arthur | last9 = Chetal | first9 = Kashish | last10 = Yukawa | first10 = Masashi | last11 = Barski | first11 = Artem|language=en|doi=10.1038/s41588-018-0102-3|pmc=|pmid=|access-date=|issn=1546-1718|quote=|via=}}</ref><ref name="NIHNews2018">{{Cite web | url=https://www.nih.gov/news-events/news-releases/epstein-barr-virus-protein-can-switch-risk-genes-autoimmune-diseases | title = Epstein-Barr virus protein can “switch on” risk genes for autoimmune diseases | last = | first = | date = 16 April 2018 | website = National Institutes of Health|archive-url=|archive-date=|url-status=|access-date=}}</ref>

== Initial infection ==
[[File:Epstein-barr virus (ebv).jpg|thumb|A stained sample of Epstein-Barr virus.]]
Symptoms of EBV infection include:
* [[fatigue]]
* [[fever]]
* [[rash]]
* inflamed [[sore throat|throat]]
* [[swollen lymph nodes]]
* enlarged [[spleen]]
* swollen [[liver]]<ref name="CDC">{{Cite web | url=http://www.cdc.gov/epstein-barr/about-ebv.html | title = Epstein-barr {{!}} Mononucleosis {{!}} About Virus {{!}} Mono | date = 2018-05-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-11-14}}</ref>

===Age of infection===

Most people acquire EBV before the age of ten. Typically, young children who acquire EBV are either not symptomatic or have mild symptoms that are hard to distinguish from a cold or other other mild, childhood illnesses.<ref>{{Cite book|title=Fields Virology|chapter=Epstein-Barr virus|date=2001|publisher=Lippincott Williams & Wilkins|location=Philadelphia, PA|pages=2575–2627|editor-last=Knipe|editor-first=DM|editor-last2=Howley|editor-first2=PM|last=Rickinson|first=AB|last2=Kieff|first2=E}}</ref>

In adolescents and young adults, EBV can cause [[infectious mononucleosis]] (IM), also known as glandular fever.<ref name="CDC" /> IM is characterized by [[fever]], [[sore throat]], [[swollen lymph nodes]], [[pain|body aches]], and [[fatigue]]. It generally resolves with rest and only rarely causes serious complications. It typically occurs in people who have not been exposed to EBV in early childhood, and in comparison, is more severe than infection in childhood (i.e., it can last for months).

Following initial infection, EBV can reactivate and has been shown to have many connections with various chronic illnesses. Relative to initial infections, reactivated EBV is much more severe.

==Transmission==

EBV is transmitted through bodily fluids, most commonly through saliva. The first time a person is infected with EBV, the person is contagious for weeks (even when not displaying symptoms). The virus then transitions to the latent or inactive form, and stays in the body. If the virus reactivates, the person will be contagious again.<ref name="CDC" />

== Diagnosis ==
EBV infection is confirmed with blood tests that detect presence of [[:Category:Antibodies|antibodies]]. Nine out of ten adults have these antibodies, indicating that they have a current or past EBV infection.<ref name="CDC" />

Anti-VCA (Viral capsid antigen) IgG and EBV nuclear antigen (EBNA) IgG antibodies persist throughout a person's life. Thus, positive results merely indicate a current or past infection. A current EBV infection is diagnosed based on the presence of Anti-VCA IgM and Anti-EA (Early Antigen) IgG. VCA IgM appears early in EBV infection and usually disappears within four to six weeks. Positive VCA IgM suggests current active acute EBV infection. EA IgG appears in the acute phase of illness and generally falls to undetectable levels after three to six months. Positive EA IgG can suggest current active EBV infection or EBV re-activation. <ref name="CDC-testing">{{Cite web | url=https://www.cdc.gov/epstein-barr/laboratory-testing.html | title = Epstein-barr {{!}} Mononucleosis {{!}} Laboratory Testing {{!}} Mono | date = 2019-01-28 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2020-10-08}}</ref>

==Latency==

In healthy adults, the virus remains latent for life in memory [[B cell]]s. It is estimated that one in every one hundred thousand to one million circulating B cells carry EBV.<ref name="Hsu2000">{{Cite journal | last = Hsu | first = J.L. | last2 = Glaser | first2 = S.L. | date = Apr 2000 | title = Epstein-barr virus-associated malignancies: epidemiologic patterns and etiologic implications |url =https://www.ncbi.nlm.nih.gov/pubmed/10781747/|journal=Critical Reviews in Oncology/Hematology|volume=34|issue=1 | pages = 27–53|issn=1040-8428|pmid=10781747}}</ref> In healthy hosts, EBV populations are kept in check by [[CD4+ T cell|CD4+]] and [[CD8|CD8+]] [[T cell|T-cell]] responses.

The equilibrium can be disrupted in individuals with compromised [[immune system]]s such as patients with [[AIDS]] or transplant patients taking immune system suppressing drugs.<ref name="Priatel2014">{{Cite journal | last = Priatel | first = John J | last2 = Chung | first2 = Brian K | last3 = Tsai | first3 = Kevin | last4 = Tan | first4 = Rusung | date = 2014-04-09 | title = Natural killer T cell strategies to combat Epstein–Barr virus infection | url =https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4063158/|journal=Oncoimmunology|volume=3|issue=| pages = e28329|doi=10.4161/onci.28329|issn=2162-4011|pmc=4063158|pmid=25050206|quote=|via=}}</ref> It has been observed that these patients are more susceptible to EBV-related [[cancer]]s, such as certain [[lymphoma]]s and carcinomas.<ref>{{Cite journal | last = Pattle | first = Samuel B. | last2 = Farrell | first2 = Paul J. | date = Nov 2006 | title = The role of Epstein-Barr virus in cancer |url =https://www.ncbi.nlm.nih.gov/pubmed/17049016|journal=Expert Opinion on Biological Therapy|volume=6|issue=11 | pages = 1193–1205|doi=10.1517/14712598.6.11.1193|issn=1744-7682|pmid=17049016|quote=|via=}}</ref> In immunocompromised patients, EBV can induce lymphoproliferation, [[lymphoma]], and hemophagocytic lymphohistiocytosis (HLH).<ref>{{Cite journal | title = Human immunity against EBV—lessons from the clinic | date = 2017-01-20| url = https://doi.org/10.1084/jem.20161846|journal=Journal of Experimental Medicine|volume=214|issue=2 | pages = 269–283 | last = Tangye | first = Stuart G. | last2 = Palendira | first2 = Umaimainthan | last3 = Edwards | first3 = Emily S.J.|doi=10.1084/jem.20161846|issn=0022-1007}}</ref>
===Natural killer T cells===

It is thought that [[natural killer T cell]]s (NKT) play a pivotal role in the control of EBV-infected B cells through their recognition of [[CD1d]] expressing cells.<ref name="Priatel2014" />

==Neuronal infection==
A 2015 study<ref name="JhaHC2015">{{Cite journal | last1 = Jha | first1 = HC | author-link1 = | last2 = Mehta | first2 = D | authorlink2 = | last3 = Lu | first3 = J | authorlink3 = | last4 = El-Naccache | first4 = D | authorlink4 = | last5 = Shukla | first5 = SK | authorlink5 = | last6 = Kovacsics | first6 = C | authorlink6 = | last7 = Kolson | first7 = D | author-link7 = | last8 = Robertson | first8 = ES | author-link8 = | title = Gammaherpesvirus Infection of Human Neuronal Cells| journal = mBio | volume = 6 | issue =6 | pages = e01844-15 | date = 2016-12-01| doi = 10.1128/mBio.01844-15 | pmid = 26628726| url =http://mbio.asm.org/content/6/6/e01844-15 }}</ref> demonstrated that human [[neuron]]al cells could be directly and actively infected with EBV and another [[herpesvirus]], Kaposi's sarcoma-associated herpesvirus (KSHV).

Neuronal cells were infected with EBV or KSHV viruses which had been combined with a fluorescent protein so that the infection could be observed. The infection was seen to produce new virus cells (productive) and spread efficiently. Significantly, it not only infected surrounding neuronal cells but also nearby [[Peripheral blood mononuclear cell|peripheral blood mononuclear cells]].

EBV is known to be linked to many neuronal diseases<ref name="Kleines2011">{{citation | last1 = Kleines | first1 = M | last2 = Schiefer | first2 = J | last3 = Stienen | first3 = A | last4 = Blaum | first4 = M | last5 = Ritter | first5 = K | last6 = Häusler | first6 = M | title = Expanding the spectrum of neurological disease associated with Epstein-Barr virus activity | journal =European Journal of Clinical Microbiology & Infectious Diseases
| issn = 1435-4373| volume = 30 | issue = 12| pages = 1561–1569 | date = 2011-05-15| doi = 10.1007/s10096-011-1261-7| url = http://link.springer.com/article/10.1007/s10096-011-1261-7}}</ref> but this is the first evidence of how this may occur. The researchers note that this research supports the presence of EBV in neuronal diseases, but does not indicate why this is so.

==In human disease==

Epstein-Barr virus has been associated with a wide number of immune diseases including [[multiple sclerosis]], [[rheumatoid arthritis]], [[systemic lupus erythematosus]],<ref name="Lossius2012">{{Cite journal | title = Epstein-Barr Virus in Systemic Lupus Erythematosus, Rheumatoid Arthritis and Multiple Sclerosis—Association and Causation | date = December 2012| url = https://www.mdpi.com/1999-4915/4/12/3701|journal=Viruses|volume=4|issue=12 | pages = 3701–3730 | last = Lossius | first = Andreas | author-link = | last2 = Johansen | first2 = Jorunn N. | authorlink2 = | last3 = Torkildsen | first3 = Øivind | authorlink3 = | last4 = Vartdal | first4 = Frode | authorlink4 = | last5 = Holmøy | first5 = Trygve | authorlink5 = |language=en|doi=10.3390/v4123701|pmc=PMC3528287|pmid=|issn=1999-4915|via=|quote=}}</ref> c[[Chronic fatigue syndrome|hronic fatigue syndrome]], and [[myasthenia gravis]]. EBV was recently discovered to turn on "risk genes" for autoimmune disease in the cells it infects. [[Epstein-Barr virus nuclear antigen 2|EBNA2]], a protein produced by EBV-infected cells, and its related transcription factors activate half the human genes known to be associated with the risk for lupus as well as genes associated with several other autoimmune diseases including [[multiple sclerosis]], [[rheumatoid arthritis]], [[inflammatory bowel disease]], [[Diabetes#Types|type 1 diabetes]], [[juvenile idiopathic arthritis]] and [[celiac disease]]. EBV activation can thus increase the risk of developing these diseases.<ref name="Harley2018" /><ref name="NIHNews2018" />

===Chronic fatigue syndrome===

A prospective study of 250 primary care patients revealed a higher prevalence of [[chronic fatigue syndrome]] after infectious [[mononucleosis]] (glandular fever) when compared to an ordinary upper respiratory tract infection.<ref name="White1998">{{Cite journal | last = White | first = P.D. | last2 = Thomas | first2 = J.M. | last3 = Amess | first3 = J. | last4 = Crawford | first4 =D.H. | last5 = Grover | first5 = S.A. | last6 = Kangro | first6 = H.O. | last7 = Clare | first7 = A.W. | date = Dec 1998 | title = Incidence, risk and prognosis of acute and chronic fatigue syndromes and psychiatric disorders after glandular fever |url =https://www.ncbi.nlm.nih.gov/pubmed/9926075|journal=The British Journal of Psychiatry: The Journal of Mental Science|volume=173 | pages = 475–481|issn=0007-1250|pmid=9926075|issue=|doi=|pmc=|quote= | author-link = Peter White|via=}}</ref> Anti-early antigen titers to EBV were elevated in CFS patients and associated with worse symptoms.<ref name="Schmaling1996">{{Cite journal | last = Schmaling | first = K.B. | last2 = Jones | first2 = J.F. | date = Jan 1996 | title = MMPI profiles of patients with chronic fatigue syndrome | url =https://www.ncbi.nlm.nih.gov/pubmed/8730646|journal=Journal of Psychosomatic Research|volume=40|issue=1 | pages = 67–74|issn=0022-3999|pmid=8730646}}</ref> A 2006 Australian prospective study found that 12% of subjects infected by EBV met the criteria for [[chronic fatigue syndrome]] (defined by the [[Fukuda criteria]]) six months after their infection, and 9% still had CFS 12 months after infection.<ref name="Hickie2006">{{Cite journal | last = Hickie | first = Ian | author-link = Ian Hickie | last2 = Davenport | first2 = Tracey | authorlink2 = Tracey Davenport | last3 = Wakefield | first3 = Denis | authorlink3 = Denis Wakefield | last4 = Vollmer-Conna | first4 = Ute | authorlink4 = Uté Vollmer-Conna | last5 = Cameron | first5 = Barbara | authorlink5 = | last6 = Vernon | first6 = Suzanne D | authorlink6 = Suzanne Vernon | last7 = Reeves | first7 = William C | author-link8 = William Reeves | last8 = Lloyd | first8 = Andrew | author-link8 = Andrew Lloyd | date = 2006-09-16 | title = Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1569956/|journal=BMJ : British Medical Journal|volume=333|issue=7568 | pages = 575|doi=10.1136/bmj.38933.585764.AE|issn=0959-8138|pmc=1569956|pmid=16950834|access-date=|quote=|via=}}</ref> (The same rate held true for [[Ross River virus]] and [[Q fever]].) In another study sample, 110 of 178 patients with increased antibodies against EBV had a diagnosis of CFS.<ref name="Mikirova2014" />

=== Long COVID ===
Long COVID may be associated [[herpesvirus]] reactivation such as EBV.<ref>{{Cite journal | last = Proal | first = Amy D. | authorlink = Amy Proal | last2 = VanElzakker | first2 = Michael B. | authorlink2 = Michael VanElzakker | date = 2021 | title=Long COVID or Post-acute Sequelae of COVID-19 (PASC): An Overview of Biological Factors That May Contribute to Persistent Symptoms |url =https://www.frontiersin.org/articles/10.3389/fmicb.2021.698169/full|journal=Frontiers in Microbiology|language=English|volume=12|issue= | pages = 698169|doi=10.3389/fmicb.2021.698169|issn=1664-302X}}</ref><ref name=":0">{{Cite journal | title = Investigation of Long COVID Prevalence and Its Relationship to Epstein-Barr Virus Reactivation | date = June 2021| url = https://www.mdpi.com/2076-0817/10/6/763/htm|journal=Pathogens|volume=10|issue=6 | pages = 763 | last = Gold | first = Jeffrey E. | authorlink = | last2 = Okyay | first2 = Ramazan A. | authorlink2 = | last3 = Licht | first3 = Warren E. | author-link3 = | last4 = Hurley | first4 = David J. | author-link4 = | last5 = | first5 = | authorlink5 = | last8 = | first8 = |language=en|doi=10.3390/pathogens10060763|pmc=|pmid=|access-date=|issn=2076-0817|quote=|via=}}</ref>

===Multiple sclerosis===

Infection later in life, high serum titers against EBV, and [[mononucleosis]] have all been associated with an increased risk of multiple sclerosis. MS relapses are correlated with EBV reactivation.<ref name="Holmoy2008">{{Cite journal | title = Vitamin D status modulates the immune response to Epstein Barr virus: Synergistic effect of risk factors in multiple sclerosis | date = 2008-01-01| url = https://www.sciencedirect.com/science/article/pii/S0306987707003167|journal=Medical Hypotheses|volume=70|issue=1 | pages = 66–69 | last = Holmøy | first = Trygve|language=en|doi=10.1016/j.mehy.2007.04.030|issn=0306-9877}}</ref>

Several studies by Alberto Ascherio, MD, DrPH, and his team at the Harvard School of Public Health have suggested that EBV is involved in [[multiple sclerosis]], specifically in people with a certain immune-related gene and high levels of antibodies to EBV in their blood.<ref>{{Cite web | url=https://www.nationalmssociety.org/What-is-MS/What-Causes-MS/Viruses | title = Viruses | last = | first = | date = |website=National Multiple Sclerosis Society|archive-url=|archive-date=|url-status=|access-date=2018-11-14}}</ref>

=== Systemic lupus erythematosus ===
In a study of young patients with lupus, 99% had EBV as compared to 70% of healthy controls.<ref name="James1997">{{Cite journal | title = An increased prevalence of Epstein-Barr virus infection in young patients suggests a possible etiology for systemic lupus erythematosus. | date = 1997-12-15| url = https://www.jci.org/articles/view/119856|journal=The Journal of Clinical Investigation|volume=100|issue=12 | pages = 3019–3026 | last = James | first = J.A. | last2 = Kaufman | first2 = K.M. | last3 = Farris | first3 = A.D. | last4 = Taylor-Albert | first4 = E. | last5 = Lehman | first5 = T.J. | last6 = Harley | first6 = J.B.|language=en|doi=10.1172/JCI119856|pmid=9399948|issn=0021-9738}}</ref> Another study found that patients with systemic lupus erythematosus had a roughly 40-fold increase in EBV viral loads compared with controls, likely stemming from altered [[t cell]] responses against EBV.<ref>{{Cite journal | title = Defective Control of Latent Epstein-Barr Virus Infection in Systemic Lupus Erythematosus | date = 2004-01-15| url = https://www.jimmunol.org/content/172/2/1287|journal=The Journal of Immunology|volume=172|issue=2 | pages = 1287–1294 | last = Kang | first = Insoo | last2 = Quan | first2 = Timothy | last3 = Nolasco | first3 = Helena | last4 = Park | first4 = Sung-Hwan | last5 = Hong | first5 = Myung Sun | last6 = Crouch | first6 = Jill | last7 = Pamer | first7 = Eric G. | last8 = Howe | first8 = John Greg | last9 = Craft | first9 = Joe|language=en|doi=10.4049/jimmunol.172.2.1287|pmid=14707107|issn=0022-1767}}</ref>

===Myasthenia gravis===

[[Myasthenia gravis]] is an [[autoimmune disease]] which has been associated with a large number of different viruses, particularly EBV, [[Human papillomavirus|HPV]], and [[Poliovirus|polioviruses]]. In several studies EBV infection of the thymus has been found in myasthenia gravis patients, but not all studies have found this.<ref name=":1">{{Cite journal | title = A Systematic Review of the Potential Implication of Infectious Agents in Myasthenia Gravis | date = 2021 | url=https://www.frontiersin.org/article/10.3389/fneur.2021.618021|journal=Frontiers in Neurology|volume=12 | last = Leopardi | first = Victoria | last2 = Chang | first2 = Yu-Mei | last3 = Pham | first3 = Andrew | last4 = Luo | first4 = Jie | last5 = Garden | first5 = Oliver A.|doi=10.3389/fneur.2021.618021/full|issn=1664-2295}}</ref> [[B cell|B cells]] from [[myasthenia gravis]] patients stimulated ''in vitro'' by Epstein-Barr virus produced [[acetylcholine]] autoantibodies.<ref>{{Cite journal | last = Brenner | first = T. | last2 = Timore | first2 = Y. | last3 = Wirguin | first3 = I. | last4 = Abramsky | first4 = O. | last5 = Steinitz | first5 = M. | date = Oct 1989 | title = In vitro synthesis of antibodies to acetylcholine receptor by Epstein-Barr virus-stimulated B-lymphocytes derived from patients with myasthenia gravis |url =https://www.ncbi.nlm.nih.gov/pubmed/2553772|journal=Journal of Neuroimmunology|volume=24|issue=3 | pages = 217–222|issn=0165-5728|pmid=2553772}}</ref> While EBV infection of the [[thymus]] has been posited as a causative agent for the production of [[acetylcholine]] receptor autoantibodies in [[myasthenia gravis]].<ref>{{Cite journal | last = Kaminski | first = Henry J | last2 = Minarovits | first2 = Janos | title = Epstein-barr virus: Trigger for autoimmunity?| url = http://www.academia.edu/20258853/Epstein-barr_virus_Trigger_for_autoimmunity/|journal=Annals of Neurology|language=en|issn=0364-5134 | date = 2010 | volume=67|issue=6 | pages = 697-698| doi = | pmc = | pmid = | quote = |access-date=|via=}}</ref>, there is only limited evidence supporting EBV or other viruses as a cause of myasthenia gravis.<ref name=":1" />

=== Gastrointestinal disease ===
One study of EBV in patients with [[gastritis]], [[Crohn's disease]], and [[ulcerative colitis]] and normal controls found essentially undetectable levels of EBV in normal gastric mucosa. However, EBV was detected in 46% of gastritis lesions, 44% of normal colonic mucosa, 55% of Crohn’s disease, and 64% of ulcerative colitis samples.<ref>{{Cite journal | title = Epstein-Barr Virus Infection Is Common in Inflamed Gastrointestinal Mucosa | date = 2012-07-01| url = https://doi.org/10.1007/s10620-012-2116-5|journal=Digestive Diseases and Sciences|volume=57|issue=7 | pages = 1887–1898 | last = Ryan | first = Julie L. | last2 = Shen | first2 = You-Jun | last3 = Morgan | first3 = Douglas R. | last4 = Thorne | first4 = Leigh B. | last5 = Kenney | first5 = Shannon C. | last6 = Dominguez | first6 = Ricardo L. | last7 = Gulley | first7 = Margaret L.|language=en|doi=10.1007/s10620-012-2116-5|pmc=PMC3535492|pmid=22410851|issn=1573-2568}}</ref>

===Lyme disease===
Several herpesviruses including Epstein-Barr virus may cause false positives on [[Lyme disease]] tests.<ref name="Goossens1999">{{Cite journal | last1 = Goossens | first1 = HA | last2 = Nohlmans | first2 = MK | last3 = van den Bogaard | first3 = AE | title = Epstein-Barr virus and cytomegalovirus infections cause false-positive results in IgM two-test protocol for early Lyme borreliosis| journal = Infection | date = May-Jun 1999 | volume = 27 | issue = 3| pages =231| doi = 10.1007/BF02561539 | pmid = 10378140| url = https://www.ncbi.nlm.nih.gov/pubmed/10378140}}</ref>

===XMEN disease===

A 2014 study found chronic Epstein-Barr infection was linked to a magnesium transporter [[magnesium transporter 1|MAGT]] mutation.<ref name="MAGT1">{{Cite web | url=https://www.ncbi.nlm.nih.gov/gene/84061 | title = MAGT1 magnesium transporter 1 [Homo sapiens (human)] | last = | first = | authorlink = | date = | website = NCBI|archive-url=|archive-date=|url-status=|access-date=2022-05-21}}</ref> Dysfunction in this transporter also resulted in decreased NK cell function, and neoplasia (sometimes-cancerous growths).<ref name="X-men_disease_1">{{Cite journal | last1 = Li | first1 = F.-Y. | author-link1 = | last2 = Chaigne-Delalande | first2 = B | authorlink2 = | last3 = Su | first3 = H | last4 = Matthews | first4 = H | last5 = Lenardo |first5 = M.J. | authorlink3 = | title = XMEN disease: a new primary immunodeficiency affecting Mg2+ regulation of immunity against Epstein-Barr virus. | journal =Blood| date = 2014| doi = 10.1182/blood-2013-11-538686| url = https://ashpublications.org/blood/article/123/14/2148/32463/XMEN-disease-a-new-primary-immunodeficiency|volume=123|issue=14 | pages = 2148–2152|pmc=|pmid=|quote=|via=}}</ref>

This disorder, termed "XMEN" (for X-linked, EBV, and neoplasia) was identified as a recessive, X-linked disorder that would therefore be many times more common in men.

Since chronic EBV infection has been associated with chronic fatigue syndrome, this error in [[magnesium]] transport may be worth considering in male patients, especially with slow onset and history of childhood infection.<ref name="X-men_disease_1" /><ref name="X-men_disease_2">{{Cite journal | title = X-linked immunodeficiency with magnesium defect, Epstein–Barr virus infection, and neoplasia disease: a combined immune deficiency with magnesium defect | date = Dec 2014| url = https://journals.lww.com/co-pediatrics/Abstract/2014/12000/X_linked_immunodeficiency_with_magnesium_defect,.16.aspx|journal=Current Opinion in Pediatrics|volume=26|issue=6 | pages = 713–719 | last = Ravell | first = Juan | author-link = | last2 = Chaigne-Delalande | first2 = Benjamin | authorlink2 = | last3 = Lenardo | first3 = Michael | authorlink3 = |language=en-US|doi=10.1097/MOP.0000000000000156|pmc=PMC4306042|pmid=25313976|access-date=|issn=1040-8703|quote=|via=}}</ref> However, in this disorder, EBV would be seen as an indicator of the illness rather than the cause.

==Vitamin D==

Some recent research is finding links between EBV and [[Vitamin D]].

An EBV protein, EBNA-3, has an affinity for the vitamin D receptor ([[VDR]]) and may actually block the activation of VDR-dependent genes by [[Vitamin D]].<ref>{{Cite journal | last = Yenamandra | first = Surya Pavan | last2 = Hellman | first2 = Ulf | last3 = Kempkes | first3 = Bettina | last4 = Darekar | first4 = Suhas Deoram | last5 = Petermann | first5 = Sabine | last6 = Sculley | first6 = Tom | last7 = Klein | first7 = George | last8 = Kashuba | first8 = Elena | date = Dec 2010 | title = Epstein-Barr virus encoded EBNA-3 binds to vitamin D receptor and blocks activation of its target genes |url =https://www.ncbi.nlm.nih.gov/pubmed/20593215|journal=Cellular and molecular life sciences: CMLS|volume=67|issue=24 | pages = 4249–4256|doi=10.1007/s00018-010-0441-4|issn=1420-9071|pmid=20593215}}</ref>

[[Vitamin D receptor]] may be required for the normal development of [[natural killer T cell]]s that react to cells expressing [[CD1d]], as in cells infected by EBV.<ref>{{Cite journal | last = Yu | first = Sanhong | last2 = Cantorna | first2 = Margherita T. | date = 2008-04-01 | title = The vitamin D receptor is required for iNKT cell development| url = http://www.pnas.org/content/105/13/5207|journal=Proceedings of the National Academy of Sciences|language=en|volume=105|issue=13 | pages = 5207–5212|doi=10.1073/pnas.0711558105|issn=0027-8424|pmid=18364394}}</ref> VDR is expressed on B cells infected with EBV, and bioactive Vitamin D3 alters T cells to be less detrimental to the immune response.<ref name="Holmoy2008" />

As low Vitamin D is also a risk factor for MS, some studies have attempt to find a link between low Vitamin D status, EBV, and MS. One study of healthy individuals found no link between EBV load and Vitamin D status. However, over half the subjects were Vitamin D deficient and none had optimal levels<ref>{{Cite journal | last = Ramien | first = Caren | last2 = Pachnio | first2 = Annette | last3 = Sisay | first3 = Sofia | last4 = Begum | first4 = Jusnara | last5 = Leese | first5 = Alison | last6 = Disanto | first6 = Giulio | last7 = Kuhle | first7 = Jens | last8 = Giovannoni | first8 = Gavin | last9 = Rickinson | first9 = Alan | date = May 2014 | title = Hypovitaminosis-D and EBV: no interdependence between two MS risk factors in a healthy young UK autumn cohort| url = https://www.ncbi.nlm.nih.gov/pubmed/24192216?dopt=Abstract|journal=Multiple Sclerosis (Houndmills, Basingstoke, England)|volume=20|issue=6 | pages = 751–753|doi=10.1177/1352458513509507|issn=1477-0970|pmid=24192216}}</ref> (i.e., above 100 nmol/l).

==Treatment==

There is no specific treatment for EBV, only treatment of symptoms, such as taking over-the-counter medications for pain and fever.<ref name="CDC" /> EBV is thought to persistent harmlessly in immunocompetent individuals, but in those with compromised immune systems it has been associated with certain cancers and possibly autoimmune disease.

===Antivirals===

Several [[antiviral]]s are active against EBV including [[valganciclovir]], [[valacyclovir]]<ref name="Hoshino2009">{{Cite journal | title = Long-term administration of valacyclovir reduces the number of Epstein-Barr virus (EBV)-infected B cells but not the number of EBV DNA copies per B cell in healthy volunteers | date = Nov 2009| url = https://pubmed.ncbi.nlm.nih.gov/19740997/|journal=Journal of Virology|volume=83|issue=22 | pages = 11857–11861 | last = Hoshino | first = Yo | author-link = | last2 = Katano | first2 = Harutaka | authorlink2 = | last3 = Zou | first3 = Ping | authorlink3 = | last4 = Hohman | first4 = Patricia | authorlink4 = | last5 = Marques | first5 = Adriana | authorlink5 = | last6 = Tyring | first6 = Stephen K. | author-link6 = | last7 = Follmann | first7 = Dean | last8 = Cohen | first8 = Jeffrey I.|doi=10.1128/JVI.01005-09|pmc=2772668|pmid=19740997|access-date=|issn=1098-5514|quote=|via=}}</ref>, [[acyclovir]]<ref name="Rafaillidis2013">{{Cite journal | title = Antiviral treatment for severe EBV infections in apparently immunocompetent patients | date = Nov 2010| url = https://pubmed.ncbi.nlm.nih.gov/20739216/|journal=Journal of Clinical Virology: The Official Publication of the Pan American Society for Clinical Virology|volume=49|issue=3 | pages = 151–157 | last = Rafailidis | first = Petros I. | authorlink = | last2 = Mavros | first2 = Michael N. | authorlink2 = | last3 = Kapaskelis | first3 = Anastasios | authorlink3 = | last4 = Falagas | first4 = Matthew E. | author-link4 = |doi=10.1016/j.jcv.2010.07.008|pmc=|pmid=20739216|access-date=|issn=1873-5967|quote=|via=}}</ref>, [[spironolactone]]<ref name="Verma2016">{{Cite journal | last1 = Verma | first1 = Dinesh | last2 = Thompson | first2 = Jacob | last3 = Swaminathan | first3 = Sankar| title = Spironolactone blocks Epstein–Barr virus production by inhibiting EBV SM protein function | journal =Proceedings of the National Academy of Sciences | issn = 1091-6490 | volume = 113 | issue = 13| pages = 3609–3614 | date = 2016-03-29 | doi = 10.1073/pnas.1523686113 | pmid = 26976570| url = http://www.pnas.org/content/113/13/3609}}</ref>, and tenofovir<ref>{{Cite journal|title=Tenofovir prodrugs potently inhibit Epstein-Barr virus lytic DNA replication by targeting the viral DNA polymerase|date=2020-06-02|url=https://pubmed.ncbi.nlm.nih.gov/32409608/|journal=Proceedings of the National Academy of Sciences of the United States of America|volume=117|issue=22|pages=12368–12374|last=Drosu|first=Natalia C.|last2=Edelman|first2=Elazer R.|last3=Housman|first3=David E.|doi=10.1073/pnas.2002392117|pmc=7275665|pmid=32409608|issn=1091-6490}}</ref>.

[[Acyclovir]], an [[antiviral]] drug which inhibits (but does not destroy) herpesviruses, was shown to also inhibit the virus production. This suggests that EBV replicates via lytic replication.

A theoretical [[immunotherapy]] treatment proposes that inducing [[CD1d]] expression on EBV-infected B cells could prompt effective immune suppression of EBV by natural killer T cells.<ref name="Priatel2014"/>

===Rituximab===

[[Rituximab]] may be effective in completely eliminating EBV infection from the peripheral blood.<ref>{{Cite journal | last = Diamantopoulos | first = Panagiotis T. | last2 = Polonyfi | first2 = Katerina | last3 = Sofotasiou | first3 = Maria | last4 = Papadopoulou | first4 = Vasiliki | last5 = Kalala | first5 = Fani | last6 = Iliakis | first6 = Theodoros | last7 = Zervakis | first7 = Kostantinos | last8 = Tsilimidos | first8 = Gerassimos | last9 = Kouzis | first9 = Panagiotis | date = Dec 2013 | title = Rituximab in the treatment of EBV-positive low grade B-cell lymphoma| url = https://www.ncbi.nlm.nih.gov/pubmed/24324119|journal=Anticancer Research|volume=33|issue=12 | pages = 5693–5698|issn=1791-7530|pmid=24324119}}</ref> A study of seventeen patients with low-grade [[B cell]] lymphoma found that after three cycles of rituximab, the virus had been completely eliminated from the peripheral blood in all but one patient.

===Herbs and nutraceuticals===

Though not tested in clinical trials, licorice derivatives quercetin and isoliquiritigenin inhibit EBV in cell cultures.<ref>{{Cite journal | title = Quercetin-induced apoptosis prevents EBV infection | date = 2015-05-20| url = https://pubmed.ncbi.nlm.nih.gov/26059439|journal=Oncotarget|volume=6|issue=14 | pages = 12603–12624 | last = Lee | first = Minjung | last2 = Son | first2 = Myoungki | last3 = Ryu | first3 = Eunhyun | last4 = Shin | first4 = Yu Su | last5 = Kim | first5 = Jong Gwang | last6 = Kang | first6 = Byung Woog | last7 = Cho | first7 = Hyosun | last8 = Kang | first8 = Hyojeung|doi=10.18632/oncotarget.3687|pmc=4494961|pmid=26059439|issn=1949-2553}}</ref> [[Vitamin C]]<ref name="Mikirova2014">{{Cite journal | title = Effect of high dose vitamin C on Epstein-Barr viral infection | date = 2014-05-03| url = https://pubmed.ncbi.nlm.nih.gov/24793092/|journal=Medical Science Monitor: International Medical Journal of Experimental and Clinical Research|volume=20 | pages = 725–732 | last = Mikirova | first = Nina | last2 = Hunninghake | first2 = Ronald|doi=10.12659/MSM.890423|pmc=4015650|pmid=24793092|issn=1643-3750}}</ref> and Vitamin D3<ref name="Rolf2017">{{Cite journal | title = Exploring the effect of vitamin D3 supplementation on the anti-EBV antibody response in relapsing-remitting multiple sclerosis | date = Sep 2018| url = https://pubmed.ncbi.nlm.nih.gov/28731372/|journal=Multiple Sclerosis (Houndmills, Basingstoke, England)|volume=24|issue=10 | pages = 1280–1287 | last = Rolf | first = Linda | author-link = | last2 = Muris | first2 = Anne-Hilde | authorlink2 = | last3 = Mathias | first3 = Amandine | authorlink3 = | last4 = Du Pasquier | first4 = Renaud | authorlink4 = | last5 = Koneczny | first5 = Inga | authorlink5 = | last6 = Disanto | first6 = Giulio | authorlink6 = | last7 = Kuhle | first7 = Jens | last8 = Ramagopalan | first8 = Sreeram | last9 = Damoiseaux | first9 = Jan | last10 = Smolders | first10 = Joost | last11 = Hupperts | first11 = Raymond|doi=10.1177/1352458517722646|pmc=6108041|pmid=28731372|access-date=|issn=1477-0970|quote=|via=}}</ref> might also decrease duration and severity of the symptoms of EBV infection.

===Vaccine===
A [[vaccine]] for the prevention of Epstein-Barr virus is being explored.<ref name="Vaccine2019">{{Cite web | url=https://www.nih.gov/news-events/news-releases/nih-researchers-make-progress-toward-epstein-barr-virus-vaccine | title = NIH researchers make progress toward Epstein-Barr virus vaccine | date = 2019-04-09 | website = National Institutes of Health (NIH)|language=en|access-date=2019-04-10}}</ref>

==Notable studies==
*1996, MMPI profiles of patients with chronic fatigue syndrome<ref name="Schmaling1996" /> - ([[pubmed:8730646|Abstract]])
*1998, Incidence, risk and prognosis of acute and chronic fatigue syndromes and psychiatric disorders after glandular fever<ref name="White1998" /> - ([[pubmed:9926075|Abstract]])
*2006, Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study<ref name="Hickie2006" /> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1569956/ (Full text)]
*2019, EBV-requisitioning physicians' guess on fatigue state 6 months after acute EBV infection<ref name="Asprusten2019">{{Cite journal | last = Asprusten | first = Tarjei Tørre | authorlink = | last2 = Pedersen | first2 = Maria | authorlink2 = Maria Pedersen | last3 = Skovlund | first3 = Eva | authorlink3 = Eva Skovlund | last4 = Wyller | first4 = Vegard Bruun | authorlink4 = Vegard Bruun Wyller | date = 2019 | title=EBV-requisitioning physicians' guess on fatigue state 6 months after acute EBV infection | url =https://www.ncbi.nlm.nih.gov/pubmed/30957026|journal=BMJ paediatrics open|volume=3|issue=1| pages = e000390|doi=10.1136/bmjpo-2018-000390|issn=2399-9772|pmc=|pmid=30957026|quote=|via=}}</ref> - ([[pubmed:30957026|Abstract]])
*2019, Predictors of chronic fatigue in adolescents six months after acute Epstein-Barr virus infection: A prospective cohort study<ref name="Pedersen2019a">{{Cite journal | last = Pedersen | first = Maria | author-link = Maria Pedersen | last2 = Asprusten | first2 = Tarjei Tørre | authorlink2 = | last3 = Godang | first3 = Kristin | authorlink3 = Kristin Godang | last4 = Leegaard | first4 = Truls Michael | authorlink4 = | last5 = Osnes | first5 = Liv Toril | authorlink5 = | last6 = Skovlund | first6 = Eva | authorlink6 = Eva Skovlund | last7 = Tjade | first7 = Trygve | author-link7 = | last8 = Øie | first8 = Merete Glenne | author-link8 = | last9 = Wyller | first9 = Vegard Bruun Bratholm | author-link9 = Vegard Bruun Wyller | date = Jan 2019 | title = Predictors of chronic fatigue in adolescents six months after acute Epstein-Barr virus infection: A prospective cohort study| url = https://www.ncbi.nlm.nih.gov/pubmed/30261303|journal=Brain, Behavior, and Immunity|volume=75|issue= | pages = 94–100|doi=10.1016/j.bbi.2018.09.023|issn=1090-2139|pmid=30261303|quote=}}</ref> - ([[pubmed:30261303|Abstract]])
*2019, Lifestyle factors during acute Epstein-Barr virus infection in adolescents predict physical activity six months later<ref name="Pedersen2019b">{{Cite journal | last = Pedersen | first = Maria | author-link = Maria Pedersen | last2 = Asprusten | first2 = Tarjei Tørre | authorlink2 = Tarjei Tørre Asprusten | last3 = Godang | first3 = Kristin | last4 = Leegaard | first4 = Truls Michael | authorlink4 = | last5 = Osnes | first5 = Liv Toril | authorlink5 = | last6 = Skovlund | first6 = Eva | authorlink6 = Eva Skovlund | last7 = Tjade | first7 = Trygve | last8 = Øie | first8 = Merete Glenne | last9 = Wyller | first9 = Vegard Bruun Bratholm | author-link9 = Vegard Bruun Wyller | date = 2019-01-27 | title = Lifestyle factors during acute Epstein-Barr virus infection in adolescents predict physical activity six months later |url =https://www.ncbi.nlm.nih.gov/pubmed/30685875|journal=Acta Paediatrica (Oslo, Norway: 1992)|volume=108|issue=8 | pages = 1521-1526|doi=10.1111/apa.14728|issn=1651-2227|pmid=30685875|quote=|via=}}</ref> - ([[pubmed:30685875|Abstract]])
*2019, Epstein-Barr Virus dUTPase Induces Neuroinflammatory Mediators: Implications for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<ref>{{Cite journal | last = Williams | first = Marshall V. | authorlink = | last2 = Cox | first2 = Brandon | authorlink2 = | last3 = Lafuse | first3 = William P. | author-link3 = | last4 = Ariza | first4 = Maria Eugenia | authorlink4 = | authorlink5 = | date = May 2019 | title = Epstein-Barr Virus dUTPase Induces Neuroinflammatory Mediators: Implications for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | url =https://linkinghub.elsevier.com/retrieve/pii/S0149291819301730|journal=Clinical Therapeutics|language=en|volume=41|issue=5 | pages = 848–863|doi=10.1016/j.clinthera.2019.04.009|pmc=6525645|pmid=31040055|quote=|via=}}</ref> - ([https://www.clinicaltherapeutics.com/article/S0149-2918(19)30173-0/fulltext Full text)]
*2019, Review article - Epstein-Barr virus induced gene-2 upregulation identifies a particular subtype of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis<ref name="Kerr2019EBV">{{Cite journal | last = Kerr | first = Jonathan R. | authorlink = Jonathan Kerr | date = Feb 2019 | title = Epstein-Barr virus induced gene-2 upregulation identifies a particular subtype of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis | url =https://www.frontiersin.org/articles/10.3389/fped.2019.00059/abstract|journal=Frontiers in Pediatrics|volume=72|issue=10 | pages = 651-8|doi=10.3389/fped.2019.00059|quote=|via= | pmc=|pmid= }}</ref> - [https://www.frontiersin.org/articles/10.3389/fped.2019.00059/full (Full text)]
*2019, Epstein-Barr virus (EBV) reactivation and therapeutic inhibitors<ref name="Kerr2019a">{{Cite journal | last = Kerr | first = Jonathan R | author-link = Jonathan Kerr | date = 2019-07-17 | title = Epstein-Barr virus (EBV) reactivation and therapeutic inhibitors |url =http://jcp.bmj.com/lookup/doi/10.1136/jclinpath-2019-205822|journal=Journal of Clinical Pathology|language=en|volume=|issue=| pages=jclinpath–2019–205822|doi=10.1136/jclinpath-2019-205822|issn=0021-9746|quote=|via=}}</ref> - [[pubmed:31315893|(Abstract)]]
*2020, Cytomegalovirus, Epstein-Barr Virus, and Human herpesvirus-6 Infections in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<ref name="Shikova2020">{{Cite journal | last = Shikova | first = Evelina | author-link = | last2 = Reshkova | first2 = Valentina | authorlink2 = | last3 = Kumanova | first3 = Аntoniya | authorlink3 = | last4 = Raleva | first4 = Sevdalina | authorlink4 = | last5 = Alexandrova | first5 = Dora | authorlink5 = | last6 = Capo | first6 = Natasa | authorlink6 = | last7 = Murovska | first7 = Modra | date = 2020 | title=Cytomegalovirus, Epstein-Barr virus, and human herpesvirus-6 infections in patients with myalgic еncephalomyelitis/chronic fatigue syndrome | url =https://onlinelibrary.wiley.com/doi/abs/10.1002/jmv.25744|journal=Journal of Medical Virology|language=en|volume=|issue=| pages=|doi=10.1002/jmv.25744|issn=1096-9071|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://doi.org/10.1002/jmv.25744 (Abstract)]
*2021, Epstein-Barr Virus and the Origin of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome<ref>{{Cite journal | title = Epstein-Barr Virus and the Origin of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome | date = Nov 15, 2021| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8634673/|journal=Frontiers in Immunology|volume=12|issue= | pages = 656797 | last = Ruiz-Pablos | first = Manuel | authorlink = | last2 = Paiva | first2 = Bruno | authorlink2 = | last3 = Monter-Mateo | first3 = Rosario | authorlink3 = | last4 = Garcia | first4 = Nicolas | authorlink4 = | last5 = Zabaleta | first5 = Aintzane | authorlink5 = |doi=10.3389/fimmu.2021.656797|pmc=|pmid=34867935|access-date=June 10, 2022|quote=|via=}}</ref> - ([https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8634673/ Full text])
*2021, Lasting Immunological Imprint of Primary Epstein-Barr Virus Infection With Associations to Chronic Low-Grade Inflammation and Fatigue<ref>{{Cite journal | title = Lasting Immunological Imprint of Primary Epstein-Barr Virus Infection With Associations to Chronic Low-Grade Inflammation and Fatigue | date = 2021 | url=https://pubmed.ncbi.nlm.nih.gov/34987499|journal=Frontiers in Immunology|volume=12 | pages = 715102 | last = Fevang | first = Børre | last2 = Wyller | first2 = Vegard Bruun Bratholm | last3 = Mollnes | first3 = Tom Eirik | last4 = Pedersen | first4 = Maria | last5 = Asprusten | first5 = Tarjei Tørre | last6 = Michelsen | first6 = Annika | last7 = Ueland | first7 = Thor | last8 = Otterdal | first8 = Kari |doi=10.3389/fimmu.2021.715102|pmc=8721200|pmid=34987499|issn=1664-3224}}</ref> - ([https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8721200/ Full text])
*2021, Investigation of Long COVID Prevalence and Its Relationship to Epstein-Barr Virus Reactivation<ref name=":0" /> [https://www.mdpi.com/2076-0817/10/6/763/htm (Full text)]
*2021, Risks for Developing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in College Students Following Infectious Mononucleosis: A Prospective Cohort Study<ref>{{Cite journal|title=Risks for Developing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in College Students Following Infectious Mononucleosis: A Prospective Cohort Study|date=2020-12-25|url=http://dx.doi.org/10.1093/cid/ciaa1886|journal=Clinical Infectious Diseases|volume=73|issue=11|pages=e3740–e3746|last=Jason|first=Leonard A|last2=Cotler|first2=Joseph|last3=Islam|first3=Mohammed F|last4=Sunnquist|first4=Madison|last5=Katz|first5=Ben Z|doi=10.1093/cid/ciaa1886|pmc=8664491|pmid=33367564|issn=1058-4838}}</ref> - ([[pmc:8664491/|Full text]])
*2022, EBV/HHV-6A dUTPases contribute to myalgic encephalomyelitis/chronic fatigue syndrome pathophysiology by enhancing TFH cell differentiation and extrafollicular activities<ref>{{Cite journal | title = EBV/HHV-6A dUTPases contribute to myalgic encephalomyelitis/chronic fatigue syndrome pathophysiology by enhancing TFH cell differentiation and extrafollicular activities | date = 2022-06-08| url = https://insight.jci.org/articles/view/158193|journal=JCI Insight|volume=7|issue=11 | last = Cox | first = Brandon S. | last2 = Alharshawi | first2 = Khaled | last3 = Mena-Palomo | first3 = Irene | last4 = Lafuse | first4 = William P. | last5 = Ariza | first5 = Maria Eugenia|language=en|doi=10.1172/jci.insight.158193|issn=0021-9738}}</ref> - ([https://insight.jci.org/articles/view/158193 Full text])

== See also ==
* [[List of herpesvirus infection studies]]
* [[Abortive infection theory of ME/CFS]] (Dr. Lerner's theory that abortive herpesviruses cause ME/CFS)
* [[Viral testing in ME/CFS]]

==Learn more ==
*[https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD011487.pub2/full Antiviral agents for infectious mononucleosis (glandular fever) (2016)] - [[Cochrane]] review
* [https://www.nationalmssociety.org/About-the-Society/News/Study-Provides-Strongest-Evidence-Yet-for-the-Role Study Provides Strongest Evidence Yet for the Role of Epstein-Barr Virus in Triggering Multiple Sclerosis (2022)] - Multiple Sclerosis Society

==References==
{{Reflist}}

[[Category:Infectious agents]]
[[Category:Triggers and risk factors]]
[[Category:Virology]]
[[Category:Viruses]]
[[Category:Herpesviruses]]

The Mysterious Disease

2025-09-22T17:06:39Z

Yakov:Create page

The Mysterious Disease (full name: The mysterious disease that affects millions of people worldwide) is a documentary film about [[ME/CFS]] that aired in 2022 on Deutsch Welle, the German public broadcaster.

== Interviews in Documentary ==

* [[Carmen Scheibenbogen]]
* [[Olav Mella]]
* [[Uta Behrends]]
* [[Øystein Fluge]]
* Bhupesh K Prusty

== Online presence ==
* [https://www.youtube.com/watch?v=YH1wn3D9HNg YouTube in English]

==See also==

* [[Unrest]]

== References ==
{{Reflist}}

[[Category:TV]]
[[Category:Film]]

Pacing

2025-05-13T15:24:25Z

Yakov:/* Blogs and articles: */ Add text to previous link

[[File:What-is-pacing-ME-CFS.png|alt=Pacing is • an activity management strategy • to help ME/CFS patients limit relapses/crashes • while remaining as active as possible|thumb]]
'''Pacing''' is an activity management strategy to help [[ME/CFS]] patients limit the number and severity of relapses while remaining as active as possible. First described by health psychologist [[Ellen Goudsmit]] in 1989,<ref>{{Cite web|url=http://www.axfordsabode.org.uk/me/pacing.htm| title = Pacing: An additional strategy to manage fatigue in chronic fatigue syndrome | last = Goudsmit | first = Ellen M. | authorlink = Ellen Goudsmit | last2 = Howes | first2 = Sandra | authorlink2 = Sandra Howes| date = |website=axfordsabode.org|archive-url=|archive-date=|url-status=|access-date=2019-11-15}}</ref> it gives patients the advice to: “do as much as you can within your limits”.<ref name=":16">{{Cite web|url=http://www.wames.org.uk/pacingweb.pdf| title = Pacing for ME and CFS: a guide for patients | last = Ellen Goudsmit | first = Ellen | authorlink=Ellen Goudsmit | date = May 2005 | website = WAMES|archive-url=|archive-date=|url-status=|access-date=2019-11-15}}</ref> Pacing recognizes research showing an abnormal metabolic and immunological response to exercise in ME/CFS and offers patients a middle ground between [[post-exertional malaise]] and the negative consequences of inactivity.

Pacing has been used as a management strategy in multi-component treatment trials<ref name=":2">Goudsmit, E.M. (1996). The psychological aspects and management of chronic fatigue syndrome. PhD thesis. Department of Psychology. Brunel University, Uxbridge, UK.</ref><ref name=":3">{{Cite journal | last = Goudsmit | first = Ellen M. | last2 = Ho-Yen | first2 = Darrel O. | last3 = Dancey | first3 = Christine P. | date = Nov 2009| title = Learning to cope with chronic illness. Efficacy of a multi-component treatment for people with chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/19576714|journal=Patient Education and Counseling|volume=77|issue=2|pages=231–236|doi=10.1016/j.pec.2009.05.015|issn=1873-5134|pmid=19576714}}</ref><ref name=":4">{{Cite journal | last = Taylor | first = Renée R. | date = Jan 2004| title = Quality of life and symptom severity for individuals with chronic fatigue syndrome: findings from a randomized clinical trial|url=https://www.ncbi.nlm.nih.gov/pubmed/14763634|journal=The American Journal of Occupational Therapy: Official Publication of the American Occupational Therapy Association|volume=58|issue=1|pages=35–43|issn=0272-9490|pmid=14763634 | last2 = | first2 = |doi=|pmc=|quote= | author-link = Renee Taylor | authorlink2 = |access-date=|via=}}</ref> and in several large patient surveys the majority of respondents found pacing to be helpful.<ref name=":5">1999 Chronicle Reader Survey. Charlotte, NC: CFIDS Association of America. CFIDS Chronicle. 1999;12(4):9.</ref><ref name=":6">Action for M.E. Severely Neglected: M.E. in the UK—Membership Survey. London: Action for M.E.; 2001.</ref><ref name=":7">ME Association. [https://www.meassociation.org.uk/wp-content/uploads/2015-ME-Association-Illness-Management-Report-No-decisions-about-me-without-me-30.05.15.pdf “No decisions about me without me”. ME/CFS illness management survey results, part 1.] Gawcott, Bucks (England), (2015).</ref> Pacing has been suggested by the CDC<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/treatment/index.html| title = Treatment {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-05-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-08-19}}</ref> and 2007 NICE guidelines<ref>National Institute for Health and Care Excellence. [https://www.nice.org.uk/guidance/cg53/resources/chronic-fatigue-syndromemyalgic-encephalomyelitis-or-encephalopathy-diagnosis-and-management-pdf-975505810885 Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management Clinical guideline (CG53).] August 2007.</ref> as an effective component in the treatment of patients with ME/CFS.

== History ==

===In ME/CFS ===
Pacing was developed as an energy management strategy for ME-patients in the [[United Kingdom|UK]] in the 1980s.<ref name=":8">{{Cite journal | last = Goudsmit | first = Ellen M. | last2 = Nijs | first2 = Jo | last3 = Jason | first3 = Leonard A. | 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|pmc=|quote= | author-link = Ellen Goudsmit | authorlink2 = Jo Nijs|access-date= | authorlink3 = Leonard Jason | authorlink4 = | authorlink5 = |via=}}</ref> Health psychologist [[Ellen Goudsmit]] had suffered from post viral syndrome herself<ref name=":16" /> the decade before and noticed how patients had to learn through trial and error how to pace themselves. Patients were forced to discover through their own frustrating experience how to stay as active as possible within the limits the disease had imposed upon them. This resulted in many unnecessary relapses. In order to prevent these, Goudsmit worked out her own approach into an advice that could be used by others. In the 1990s pacing was promoted in factsheets by various ME-groups in the UK.<ref name=":9">{{Cite news | url=https://www.prohealth.com/library/pacing-for-me-cfs-the-facts-23836| title = Pacing for ME/CFS: The Facts - Prohealth| date = 2007-01-17|work=Prohealth|access-date=2018-08-19|language=en-US}}</ref> Around the same time, [[Leonard Jason]], a professor of psychology at the University of Chicago who also suffered from a post-viral fatigue syndrome,<ref>{{Cite web|url=http://www.northbynorthwestern.com/story/arrested-development/| title = Feeling fatigued: studying CFS at Northwestern|website=northbynorthwestern.com|language=en|access-date=2018-08-19}}</ref> developed the [[Energy Envelope Theory|envelope theory]] along the same principles of energy conservation.<ref>{{Cite journal | last= Jason | first = L. A. | last2 = Melrose | first2 = H. | last3 = Lerman | first3 = A. | last4 = Burroughs | first4 = V. | last5 = Lewis | first5 = K. | last6 = King | first6 = C.P. | last7 = Frankenberry | first7 = E.L. | date=Jan 1999| title = Managing chronic fatigue syndrome: overview and case study|url=https://www.ncbi.nlm.nih.gov/pubmed/10205371|journal=AAOHN journal: official journal of the American Association of Occupational Health Nurses|volume=47|issue=1|pages=17–21|issn=0891-0162|pmid=10205371}}</ref> A decade earlier ME-expert Melvin Ramsay had written about the benefits of implementing sufficient rest periods: <blockquote>"One can hold out no specific cure for the illness but advice should immediately be given that they adapt their lives to a quieter tempo and take adequate periods of complete rest after physical exertion." </blockquote>

=== In other conditions ===
The term pacing has a longer history in the management of other chronic conditions, though its meaning is ambiguous. Two main traditions exist.<ref>{{Cite journal | last = Nielson | first = Warren R. | last2 = Jensen | first2 = Mark P. | last3 = Karsdorp | first3 = Petra A. | last4 = Vlaeyen | first4 = Johannes W.S. | date = May 2013| title = Activity pacing in chronic pain: concepts, evidence, and future directions|url=https://www.ncbi.nlm.nih.gov/pubmed/23247005|journal=The Clinical Journal of Pain|volume=29|issue=5 | pages = 461–468|doi=10.1097/AJP.0b013e3182608561|issn=1536-5409|pmid=23247005}}</ref> In the first, pacing is used in the context of energy conservation, a common element in the treatment of autoimmune and neurological disorders such as rheumatoid arthritis<ref>{{Cite journal | last = Furst | first = G. P. | last2 = Gerber | first2 = L.H. | last3 = Smith | first3 = C.C. | last4 = Fisher | first4 = S. | last5 = Shulman | first5 = B. | date = Feb 1987| title = A program for improving energy conservation behaviors in adults with rheumatoid arthritis|url=https://www.ncbi.nlm.nih.gov/pubmed/3565525|journal=The American Journal of Occupational Therapy: Official Publication of the American Occupational Therapy Association|volume=41|issue=2|pages=102–111|issn=0272-9490|pmid=3565525}}</ref> or [[Multiple sclerosis|MS.]]<ref>{{Cite journal | last = Mathiowetz | first = Virgil G. | last2 = Finlayson | first2 = Marcia L. | last3 = Matuska | first3 = Kathleen M. | last4 = Chen | first4 = Hua Yun | last5 = Luo | first5 = Ping| date = Oct 2005| title = Randomized controlled trial of an energy conservation course for persons with multiple sclerosis|url=https://www.ncbi.nlm.nih.gov/pubmed/16193899|journal=Multiple Sclerosis (Houndmills, Basingstoke, England)|volume=11|issue=5 | pages = 592–601|doi=10.1191/1352458505ms1198oa|issn=1352-4585|pmid=16193899}}</ref> Energy conservation includes balancing activity and rest, setting priorities, delegating tasks and using assistive devices such a wheelchair. This form of energy management is similar to the principles of pacing used in ME/CFS.

Pacing is however more frequently used in the context of chronic pain where it has a background in operant conditioning. First described by Wilbert Fordyce in 1976,<ref>Fordyce WE. Behavioural methods for chronic pain and illness. Mosby: St. Louis; 1976</ref> pacing referred to a time-contingent and gradual increase of activity levels. Fordyce’s main idea was that chronic pain patients shouldn’t be directed by their symptoms but by plans, goals and targets. In this context, pacing referred to the careful planned route, based on positive reinforcements instead of the fear of pain, to reach those goals.<ref>{{Cite journal | last = Gill | first = Joanna R. | last2 = Brown | first2 = Cary A. | date = Feb 2009| title = A structured review of the evidence for pacing as a chronic pain intervention | url =https://www.ncbi.nlm.nih.gov/pubmed/18448368|journal=European Journal of Pain (London, England)|volume=13|issue=2|pages=214–216|doi=10.1016/j.ejpain.2008.03.011|issn=1532-2149|pmid=18448368}}</ref> Often a task was broken up into manageable parts or quotas so the patient can go forward step by step with breaks in between. Although the principles of operant conditioning are no longer central, in the chronic pain literature pacing still frequently refers to a planned and gradual increase of activity levels. Pacing means doing things “slow but steady”,<ref>{{Cite journal | last = Nielson | first = W.R. | last2 = Jensen | first2 = M.P. | last3 = Hill | first3 = M.L. | date=Jan 2001| title = An activity pacing scale for the chronic pain coping inventory: development in a sample of patients with fibromyalgia syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/11166466|journal=Pain|volume=89|issue=2-3|pages=111–115|issn=0304-3959|pmid=11166466}}</ref> by splitting up activities in smaller parts, and without discontinuation if the patient is having a bad day. This form of pacing is quite dissimilar and sometimes even contrary to the form of pacing used in ME/CFS.

{| class="wikitable"
! colspan="5" |Definitions of pacing used in the chronic pain literature
|-
|Kavanagh (1995)<ref>Kavanagh J (1995) Management of chronic pain using the cognitive-behavioural approach. British Journal of Therapy and Rehabilitation, 2(8), 413-18</ref>
|Birkholtz & Aylwin (2000)<ref>Birkholtz M, Aylwin L (2000) OT in chronic pain management: a specialist area. Occupational Therapy News, 8(11), 26-27.</ref>
|Strong et al. (2002)<ref>Strong J, Unruh AM, Baxter GD. Pain: a textbook for therapists. Toronto: Churchill Livingstone; 2002.</ref>
|Nielson et al. (2013)<ref>{{Cite journal | last = Nielson | first = Warren R. | last2 = Jensen | first2 = Mark P. | last3 = Karsdorp | first3 = Petra A. | last4 = Vlaeyen | first4 = Johannes W.S. | date = May 2013| title = Activity pacing in chronic pain: concepts, evidence, and future directions|url=https://www.ncbi.nlm.nih.gov/pubmed/23247005|journal=The Clinical Journal of Pain|volume=29|issue=5 | pages = 461–468|doi=10.1097/AJP.0b013e3182608561|issn=1536-5409|pmid=23247005}}</ref>
|Jamieson-Lega et al. (2013)<ref>{{Cite journal | last= Jamieson-Lega | first = Kathryn | last2 = Berry | first2 = Robyn | last3 = Brown | first3 = Cary A| date = 2013 | title = Pacing: A concept analysis of a chronic pain intervention | url =https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3812193/|journal=Pain Research & Management : The Journal of the Canadian Pain Society|volume=18|issue=4|pages=207–213|issn=1203-6765|pmc=3812193|pmid=23717825}}</ref>
|-
|“Pacing involves breaking down activities into smaller steps, resting between steps and doing small amounts regularly rather than a large amount of activity in one go.”
|“Activity pacing consists of (a) changing position to time, (b) taking frequent short rests, (c) breaking tasks into manageable bits, (d) alternating positions and tasks frequently, (e) slowing down, and (f) increasing activity amounts gradually.”
|“introducing tasks in a graded manner, in order for the client to build skills, confidence and tolerance for the activity, so that activity levels can be increased”
|“Activity pacing is the regulation of activity level and/or rate in the service of an adaptive goal or goals.”
|“Pacing is an active self-management strategy whereby individuals learn to balance time spent on activity and rest for the purpose of achieving increased function and participation in meaningful activities.”
|}

== The principles of pacing ==

=== Stop before you overdo it ===
The aim of pacing in ME/CFS is to remain as active as possible while avoiding the relapses resulting from overexertion.<ref name=":0">{{Cite journal|last = Goudsmit | first = EM | authorlink = Ellen Goudsmit | last2 =Howes | first2 =S|url = http://www.axfordsabode.org.uk/me/pacing.htm| title = Pacing: a strategy to improve energy management in chronic fatigue syndrome|journal =Health Psychol Update | date = 2008|volume =17|pages =46–52}}</ref> This requires an understanding of the relationship between symptoms and exertion. Patients have to learn to recognize symptoms of [[post-exertional malaise]] and reduce their activities in time, in order to avoid relapses. This can mean that activities have to be limited and structured per day such as washing one day and cooking the next. It also means activities have to be stopped (sometimes abruptly) before they are completed, which can be frustrating and difficult to master.

=== No plans or targets but internal cues ===
In contrast to graded exercise therapy, pacing does not rely on plans, targets or goals, but on how patients feel. As one writer poetically described it: “pacing is not a static decision but necessarily fluctuates with the monitoring of the physiological imperative.”<ref>Wiener CL. The burden of rheumatoid arthritis. In: Straus AL, Corbin J, Fagerhaugh S, Glaser BG, Maines D, Suczek B, Wiener CL, editors. Chronic illness and the quality of life. 2nd ed. St. Louis: The CV Mosby Company; 1984. p 94.</ref> Rest is advised at the first signs of muscle weakness. According to [[Ellen Goudsmit|Goudsmit]] & [[Sandra Howes|Howes]] cognitive tasks form the major exception where a time-contingent approach might be more helpful.<ref name=":0" /> Because cognitive activities such as reading provide few internal cues to detect overexertion, it might be useful to use a timer to restrict energy expenditure.

=== Switching ===
A component that has been added to pacing is called switching. This refers to changing activities in order to avoid tiring specific muscles.<ref name=":9" /> As Goudsmit explains: <blockquote>“For instance, if you've been reading for a while, stop before your eye muscles get tired and do something which involves a different muscle group, e.g. walking, washing clothes, eating, talking. Do that for a while (stop before you reach your limit), and then switch again (you can even go back to reading).”<ref name=":1">[http://www.wames.org.uk/pacingweb.pdf Pacing for ME and CFS: a guide for patients by Dr Ellen Goudsmit]. Wames. May 2005. </ref></blockquote>Rest periods can be inserted between each change of activity.

=== Use of a diary or activity tracker ===
Another advice that is often part of pacing is to keep a diary where information about activity levels, stressful events and symptom flare-ups can be recorded. This might help patients to understand the relation between overexertion and symptoms. Abbreviations and scoring systems can be used to limit the energy needed to fill in the diary. Other patients find it helpful to use an activity tracker<ref>{{Cite web|url=http://cfsrecovery.blogspot.com/2013/01/me-cfs-cfids-and-activity-monitoring.html| title = Come with M.E. on a journey: ME CFS CFIDS and activity monitoring | last = Beauts| date = 2013-01-05 | website = Come with M.E. on a journey|access-date=2018-08-19}}</ref> to obtain more reliable information on the amount of energy they’ve spent each day and how this corresponds with their state of health.

=== Increase activity when you are ready ===
Pacing is about figuring out how much one can do without triggering a relapse. If patients feel their health has stabilized or improved and they no longer experience setbacks, it might be helpful to gradually increase activities to see how it goes. In a consensus document about pacing, [[Ellen Goudsmit|Goudsmit]] & [[Leonard Jason|Jason]] wrote: <blockquote>“If increases in activity do not result in symptom flare-ups for three months and patients feel that they are close to about 60 to 70% of their former functioning, they may wish to change to a gentle form of graded exercise therapy (GET), starting at a low level and increasing incrementally in duration and intensity to further increase their fitness and tolerance thresholds.”<ref name=":8" /></blockquote>One of the other authors of this consensus document, Karen Wallman, tested a symptom-contingent form of graded exercise in a randomized controlled trial in 2004. Patients were allowed to stop or do less if their symptoms became worse while increases in exercise were only advised if patients felt they were coping with the current activity level. After 12 weeks of 'graded exercise with pacing', patients showed improvement on objective outcome measures such as blood lactate production and performance on a Stroop colour word test.<ref>{{Cite journal | last = Wallman | first = Karen E. | last2 = Morton | first2 = Alan R. | last3 = Goodman | first3 = Carmel | last4 = Grove | first4 = Robert | last5 = Guilfoyle | first5 = Andrew M. | date = 2004-05-03| title = Randomised controlled trial of graded exercise in chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/15115421|journal=The Medical Journal of Australia|volume=180|issue=9 | pages = 444–448|issn=0025-729X|pmid=15115421}}</ref>

=== Not a Therapy ===
Pacing often is a helpful coping strategy for patients with ME/CFS, but it is not a therapy. It does not claim to alleviate the many symptoms of ME/CFS such as sore throat or light sensitivity. Pacing is not so much a treatment as a way of energy management for patients with ME/CFS. It is usually one component of a multidisciplinary program for ME/CFS patients that may also include information about the disease, emotional support or advice on nutrition. Because pacing does not require specialist training, its basic principles can be counseled by a GP or nurse.<ref name=":8" />
== Scientific evidence ==

===In ME/CFS ===
Pacing has been used in several multi-component treatment trials. In 1996 Goudsmit conducted a controlled trial for patients with post-infectious fatigue syndrome. Pacing was one component of a multidisciplinary treatment protocol prescribed by Darrel O. Ho-Yen<ref>Ho-Yen DO. Better recovery from viral illnesses. 3rd ed. Inverness: Dodona Books, 1993.</ref> which also included medical care, emotional support and advice on avoiding stress. More than 80% of patients reported feeling better. At 6 months there was a significant difference between controls on outcome measures such as fatigue or self-efficacy. Twenty-three percent of the patients had improved to such a degree that they were discharged.<ref name=":2" /><ref name=":3" />

In 2004 [[Renee Taylor]] offered a similar multidisciplinary program to 47 ME/CFS-patients in a randomized clinical trial.<ref name=":4" /> This study was part of the Chronic Fatigue Syndrome Empowerment project, a federally funded research project designed to develop and evaluate the effects of a consumer-driven rehabilitation program for individuals with chronic fatigue syndrome. Participants received four months of illness management groups followed by seven month one-on-one self-advocacy training. Besides pacing the program focused on economic self-sufficiency, coping skills and nutritional advice. Results indicated that overall quality of life had significant improved in the treatment group – a remarkable finding, since trials on cognitive behavioral therapy or graded exercise therapy, often fail to improve quality of life in ME/CFS patients.<ref>{{Cite book | url =https://www.ncbi.nlm.nih.gov/books/NBK379582/| title = July 2016 Addendum | last = Smith | first = M. E. Beth | last2 = Nelson | first2 = Heidi D. | last3 = Haney | first3 = Elizabeth | last4 = Pappas | first4 = Miranda | last5 = Daeges | first5 = Monica | last6 = Wasson | first6 = Ngoc | last7 = McDonagh | first7 = Marian | date = Dec 2014|publisher=Agency for Healthcare Research and Quality (US)|language=en}}</ref>

Further evidence supporting pacing, comes from research on the [[Energy Envelope Theory|envelope theory]], an energy management strategy developed by Leonard Jason which is based on similar principles. Patients are advised to stay within the envelope; meaning the limits the disease has imposed upon them. Patients who over-exert themselves are advised to cut back while those who have been inactive for a long time are encouraged to gradually increase their activity. An analysis of the activity pattern of 144 ME/CFS patients showed that those who extend their activities beyond their energy envelope, experience more disability.<ref>{{Cite journal | last= Jason | first = Leonard | last2 = Muldowney | first2 = Kathleen | last3 = Torres-Harding | first3 = Susan | date = May 2008| title = The Energy Envelope Theory and myalgic encephalomyelitis/chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/18578185|journal=AAOHN journal: official journal of the American Association of Occupational Health Nurses|volume=56|issue=5|pages=189–195|issn=0891-0162|pmid=18578185}}</ref> These results were confirmed in a larger 2017 study involving 429 patients from different locations.<ref name=":10">{{Cite journal | last = O'Connor | first = Kelly | last2 = Sunnquist | first2 = Madison | last3 = Nicholson | first3 = Laura | last4 = Jason | first4 = Leonard A. | last5 = Newton | first5 = Julia L. | last6 = Strand | first6 = Elin B. | date = 2017-01-01| title = Energy envelope maintenance among patients with myalgic encephalomyelitis and chronic fatigue syndrome: Implications of limited energy reserves|url=https://www.ncbi.nlm.nih.gov/pubmed/29231037|journal=Chronic Illness|pages=1742395317746470|doi=10.1177/1742395317746470|issn=1745-9206|pmc=5750135|pmid=29231037}}</ref> Furthermore, a prospective study of 44 patients who were part of a study on nonpharmacological interventions in ME/CFS, showed that “those who were within their energy envelope before treatment showed more improvement in physical functioning and fatigue compared to those outside of their energy envelope."<ref name=":11">{{Cite journal | last = Brown | first = Molly | last2 = Khorana | first2 = Neha | last3 = Jason | first3 = Leonard A. | date = Mar 2011| title = The Role of Changes in Activity as a Function of Perceived Available and Expended Energy in Non-Pharmacological Treatment Outcomes for ME/CFS|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3164291/|journal=Journal of clinical psychology|volume=67|issue=3|pages=253–260|doi=10.1002/jclp.20744|issn=0021-9762|pmc=3164291|pmid=21254053}}</ref>

In several large patient surveys, respondents indicated they’ve found pacing to be helpful in managing ME/CFS. A 1999 survey (n = 820) by the CFIDS Association of America (now Solve ME/CFS initiative) showed that 71% of patients rated pacing as helpful.<ref name=":5" /> In a survey conducted by Action for ME (n = 2338) in 2001, 89% of the respondents found pacing to be helpful.<ref name=":6" /> These results were confirmed in a follow-up study by Action for ME in 2008.<ref>{{Cite web|url=https://afme.wordpress.com/category/survey-2008/| title = Survey 2008 « Action for M.E.|website=afme.wordpress.com|language=en|access-date=2018-08-19}}</ref>

{| class="wikitable"
! colspan="7" |Action for M.E.’s survey results on treatments in 2001 and 2008<ref name=":12">[https://www.actionforme.org.uk/uploads/pdfs/pacing-for-people-with-me-booklet.pdf Pacing for people with ME]. Action for ME. December 2013.</ref>
|-
!
! colspan="2" |Helpful
! colspan="2" |No change
! colspan="2" |Made Worse
|-
|
|2001 survey
|2008 survey
|2001 survey
|2008 survey
|2001 survey
|2008 survey
|-
|Pacing
|89%
|82%
|9%
|15%
|2%
|3%
|-
|CBT
|7%
|50%
|67%
|38%
|26%
|12%
|-
|GET
|34%
|45%
|16%
|21%
|50%
|34%
|}
Another large survey set up by the ME Association (n =1428) showed patients preferred pacing over CBT or GET and judged this approach to be more appropriate to their needs. The survey concluded: <blockquote>“Pacing was consistently shown to be the most effective, safe, acceptable and preferred form of activity management for people with ME/CFS and should therefore be a key component of any illness management programme […]The benefit of Pacing may relate to helping people cope and adapt to their illness rather than contributing to a significant improvement in functional status.”<ref name=":7" /> </blockquote>

=== In the treatment of chronic pain ===
While pacing is a highly endorsed clinical strategy in the treatment of chronic pain, empirical evidence to support its effectiveness is currently lacking. Raichel et al. for example found that pacing was correlated with higher levels of pain interference in 157 patients with spinal cord injury.<ref>{{Cite journal | last = Raichle | first = Katherine A. | last2 = Hanley | first2 = Marisol | last3 = Jensen | first3 = Mark P. | last4 = Cardenas | first4 = Diana D. | date = Sep 2007| title = Cognitions, Coping and Social Environment Predict Adjustment to Pain in Spinal Cord Injury|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2045649/|journal=The journal of pain : official journal of the American Pain Society|volume=8|issue=9 | pages = 718–729|doi=10.1016/j.jpain.2007.05.006|issn=1526-5900|pmc=2045649|pmid=17611163}}</ref> In a study by Ersek et al. pacing was positively associated with physical disability and pain intensity in the elderly.<ref>{{Cite journal | last = Ersek | first = Mary | last2 = Turner | first2 = Judith A. | last3 = Kemp | first3 = Carol A. | date = Nov 2006| title = Use of the chronic pain coping inventory to assess older adults' pain coping strategies|url=https://www.ncbi.nlm.nih.gov/pubmed/17074625|journal=The Journal of Pain: Official Journal of the American Pain Society|volume=7|issue=11 | pages = 833–842|doi=10.1016/j.jpain.2006.04.002|issn=1526-5900|pmid=17074625}}</ref> Kindermans et al. reported a correlation between pacing and higher levels of disability and symptoms of depression. According to the authors, “this seems to suggest that pacing, as it is currently measured, might reflect a (hidden) form of avoidance behavior.”<ref>{{Cite journal | last = Kindermans | first = Hanne P. J. | last2 = Roelofs | first2 = Jeffrey | last3 = Goossens | first3 = Marielle E. J.B. | last4 = Huijnen | first4 = Ivan P.J. | last5 = Verbunt | first5 = Jeanine A. | last6 = Vlaeyen | first6 = Johan W.S. | date = Oct 2011| title = Activity patterns in chronic pain: underlying dimensions and associations with disability and depressed mood | url =https://www.ncbi.nlm.nih.gov/pubmed/21704568|journal=The Journal of Pain: Official Journal of the American Pain Society|volume=12|issue=10|pages=1049–1058|doi=10.1016/j.jpain.2011.04.009|issn=1528-8447|pmid=21704568}}</ref> Using accelerometers to track activity levels, Cuperus et al. were able to demonstrate in a more objective manner that pacing was associated with lower activity. This led the authors to conclude that “activity pacing might not only be ineffective, it might even be potentially harmful, as inactivity-related comorbidities increase the risk for mortality and negatively influence quality of life.”<ref>{{Cite journal | last = Cuperus | first = Nienke | last2 = Hoogeboom | first2 = Thomas J. | last3 = Neijland | first3 = Yvette | last4 = van den Ende | first4 = Cornelia Hm | last5 = Keijsers | first5 = Noël Lw| date = Nov 2012| title = Are people with rheumatoid arthritis who undertake activity pacing at risk of being too physically inactive?|url=https://www.ncbi.nlm.nih.gov/pubmed/22327885|journal=Clinical Rehabilitation|volume=26|issue=11|pages=1048–1052|doi=10.1177/0269215512437417|issn=1477-0873|pmid=22327885}}</ref> In a 2012 review Andrews et al. concluded that “pacing was generally linked to better psychological functioning but more pain and disability.”<ref>{{Cite journal | last = Andrews | first = Nicole E. | last2 = Strong | first2 = Jenny | last3 = Meredith | first3 = Pamela J. | date = Nov 2012| title = Activity pacing, avoidance, endurance, and associations with patient functioning in chronic pain: a systematic review and meta-analysis|url=https://www.ncbi.nlm.nih.gov/pubmed/22728699|journal=Archives of Physical Medicine and Rehabilitation|volume=93|issue=11|pages=2109–2121.e7|doi=10.1016/j.apmr.2012.05.029|issn=1532-821X|pmid=22728699}}</ref>

Since then, several explanations have been put forward to explain these bleak results. Susan Murphy argued that there might be a difference between how patients and clinicians view pacing. According to Murphy patients' intrinsic view on pacing is mostly symptom-contingent and directed at reducing pain, while those of clinicians is time-contingent and aimed at increasing activity levels.<ref>{{Cite journal | last = Murphy | first = Susan Lynn | last2 = Kratz | first2 = Anna Louise | date = Dec 2014| title = Activity pacing in daily life: A within-day analysis|url=https://www.ncbi.nlm.nih.gov/pubmed/25267209|journal=Pain|volume=155|issue=12|pages=2630–2637|doi=10.1016/j.pain.2014.09.028|issn=1872-6623|pmc=4353388|pmid=25267209}}</ref> An appropriate assessment of pacing should thus occur after instructions by a clinician, to account for these differences.<ref>{{Cite journal | last = Murphy | first = Susan L. | last2 = Clauw | first2 = Daniel J. | date = Jun 2010| title = Activity pacing: what are we measuring and how does that relate to intervention?|url=https://www.ncbi.nlm.nih.gov/pubmed/20381246|journal=Pain|volume=149|issue=3 | pages = 582–583|doi=10.1016/j.pain.2010.03.031|issn=1872-6623|pmid=20381246}}</ref> Murphy also suggested pacing should be tailored to the individual patient by using physiological measures obtained during an exercise test, as targets.<ref>{{Cite journal | last = Murphy | first = Susan L. | last2 = Lyden | first2 = Angela K. | last3 = Smith | first3 = Dylan M. | last4 = Dong | first4 = Qian | last5 = Koliba | first5 = Jessica F. | date = Nov 2010| title = Effects of a tailored activity pacing intervention on pain and fatigue for adults with osteoarthritis|url=https://www.ncbi.nlm.nih.gov/pubmed/21218677|journal=The American Journal of Occupational Therapy: Official Publication of the American Occupational Therapy Association|volume=64|issue=6 | pages = 869–876|issn=0272-9490|pmc=3655423|pmid=21218677}}</ref> Her ideas were tested in a large trial of 193 patients with osteoarthritis, but once again results were disappointing. Both the general and tailored pacing group, were worse off than the patient group receiving usual care.<ref>{{Cite journal | last = Murphy | first = Susan L. | last2 = Kratz | first2 = Anna L. | last3 = Kidwell | first3 = Kelley | last4 = Lyden | first4 = Angela K. | last5 = Geisser | first5 = Michael E. | last6 = Williams | first6 = David A. | date = Jul 2016| title = Brief time-based activity pacing instruction as a singular behavioral intervention was not effective in participants with symptomatic osteoarthritis|url=https://www.ncbi.nlm.nih.gov/pubmed/26963847|journal=Pain|volume=157|issue=7|pages=1563–1573|doi=10.1097/j.pain.0000000000000549|issn=1872-6623|pmc=4912409|pmid=26963847}}</ref>

Because some studies<ref>{{Cite journal | last = Nielson | first = Warren R. | last2 = Jensen | first2 = Mark P. | date = Jun 2004| title = Relationship between changes in coping and treatment outcome in patients with Fibromyalgia Syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/15157683|journal=Pain|volume=109|issue=3|pages=233–241|doi=10.1016/j.pain.2004.01.002|issn=0304-3959|pmid=15157683}}</ref><ref>{{Cite journal | last = Cane | first = Douglas | last2 = Nielson | first2 = Warren R. | last3 = McCarthy | first3 = Mary | last4 = Mazmanian | first4 = Dwight | date = May 2013| title = Pain-related activity patterns: measurement, interrelationships, and associations with psychosocial functioning | url =https://www.ncbi.nlm.nih.gov/pubmed/23247000|journal=The Clinical Journal of Pain|volume=29|issue=5 | pages = 435–442|doi=10.1097/AJP.0b013e31825e452f|issn=1536-5409|pmid=23247000}}</ref> did find positive results for pacing in the treatment of chronic pain conditions, Deborah Antcliff argued that the term pacing, denotes several different aspects. In the Activity Pacing Questionnaire (APQ), the questionnaire she helped develop, 5 factors were differentiated: activity adjustment, activity consistency, activity progression, activity planning, and activity acceptance.<ref>{{Cite journal | last = Antcliff | first = Deborah | last2 = Campbell | first2 = Malcolm | last3 = Woby | first3 = Steve | last4 = Keeley | first4 = Philip| date = Sep 2015 | title = Assessing the Psychometric Properties of an Activity Pacing Questionnaire for Chronic Pain and Fatigue|url=https://www.ncbi.nlm.nih.gov/pubmed/25908522|journal=Physical Therapy|volume=95|issue=9|pages=1274–1286|doi=10.2522/ptj.20140405|issn=1538-6724|pmc=4556956|pmid=25908522}}</ref> Research by Antcliff suggested that adjustment, acceptance and progression were associated with worsened symptoms, while consistency was correlated with improved symptoms.<ref>Antcliff DC. (2014). [https://www.escholar.manchester.ac.uk/api/datastream?publicationPid=uk-ac-man-scw:227500&datastreamId=FULL-TEXT.PDF The development of an activity pacing questionnaire for chronic pain and fatigue.] Phd thesis. Faculty of Medical and Human Sciences, University of Manchester. </ref> This has pushed Antcliff to promote the use of a time-contingent graded increase in activity levels, as an essential element in the definition of pacing.<ref>{{Cite journal | last = Antcliff | first = Deborah | last2 = Keeley | first2 = Philip | last3 = Campbell | first3 = Malcolm | last4 = Woby | first4 = Steve | last5 = Keenan | first5 = Anne-Maree | last6 = McGowan | first6 = Linda | date = Jul 2018| title = Activity pacing: moving beyond taking breaks and slowing down | url =https://www.ncbi.nlm.nih.gov/pubmed/29396652|journal=Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation|volume=27|issue=7|pages=1933–1935|doi=10.1007/s11136-018-1794-7|issn=1573-2649|pmc=5997723|pmid=29396652}}</ref>

== Other forms of pacing used in ME/CFS ==

=== Energy Envelope Theory ===
{{Main article|page_name=Energy Envelope Theory}}<div role="note" class="hatnote navigation-not-searchable">{{Main article|page_name=Energy Envelope Theory}}</div>

[[Leonard Jason]]'s [[Energy Envelope Theory|energy envelope theory]] is very similar to pacing. Patients are advised to stay within their envelope; meaning the limits the disease has imposed upon them. According to Jason: "the phrase, 'staying within the envelope' is used to designate a comfortable range of energy expenditure, in which an individual avoids both over-exertion and under-exertion, maintaining an optimal level of activity over time.”<ref>{{Cite journal | last= Jason | first = Leonard | last2 = Benton | first2 = Mary | date = Nov 2009| title = The Impact of Energy Modulation on Physical Functioning and Fatigue Severity among Patients with ME/CFS|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2767446/|journal=Patient education and counseling|volume=77|issue=2|pages=237–241|doi=10.1016/j.pec.2009.02.015|issn=0738-3991|pmc=2767446|pmid=19356884}}</ref> Research has shown that ME/CFS patients who go beyond their envelope and spent more energy than they estimate to have, experience more symptoms over time.<ref name=":10" /><ref name=":11" />

===Adaptive pacing therapy (APT) ===
A modified form of pacing is called adapative pacing therapy (APT). This version was promoted by [[Action for ME]]<ref name=":12" /> and was used in the [[PACE trial]]<ref>Cox et al. (2004) [https://www.qmul.ac.uk/wolfson/media/wolfson/current-projects/2.apt-participant-manual.pdf Manual for participants Adaptive Pacing Therapy for CFS/ME.] </ref> as an alternative to [[cognitive behavioral therapy]], [[graded exercise therapy]] and specialist medical care. There are some major differences between APT and the original form of pacing advocated by Goudsmit. The former for example stresses splitting up activities, while this is not necessarily an advice used in the latter. APT seems more influenced by chronic pain literature as it gives more weight to planning and building up activities. A booklet on pacing, produced by Action for ME explains to patients: “you are likely to notice a temporary increase in stiffness or fatigue when increasing your activity levels. This is normal and your body will need a few days to adjust and adapt.”<ref name=":12" /> No such advice is given in the pacing, developed by Goudsmit or Jason as this may not be adequate in the treatment of patients with ME/CFS. One of the (anonymous) participants in the 2015 ME association survey, for example, complained that pacing put too much emphasis on increasing activity:<blockquote>"It taught me to listen to my body and not ignore symptoms and I gradually began to see the link between exercise/activity and delayed fatigue, which I hadn't done beforehand. That was crucial in slowing down my deterioration. But I wish someone had said 'if you are experiencing symptoms you should rest' – the message was, 'you can get worse briefly but symptoms should then go again'. I kept waiting for them to go and they never did. Then I had a massive relapse which I have not recovered from. Pacing is not very satisfactory – it is full of confusing contradictory messages […] I felt the emphasis was too heavily on increasing activity – I should have been told to rest.”<ref name=":7" /></blockquote>These criticisms seem to apply to APT, and not to pacing.

Another major difference is that APT promotes the use of preemptive rest. In the [[PACE trial]] for example patients were advised to follow the 70%-rule, meaning they shouldn’t go beyond 70% of their perceived energy. This is also not an element in the writings of Goudsmit or Jason, where patients are advised to correctly balance perceived energy and energy expenditure. Telling ME/CFS patients to do even less than their perceived energy limit might have negative consequences, as was noticed by Leonard Jason: “By doing less than what patients have the energy to do, and the resulting preemptive rest, this intervention could even have the unwitting effects of increasing social isolation.”<ref name=":13">{{Cite journal | last= Jason | first = Leonard A| date = 2017-08-01| title = The PACE trial missteps on pacing and patient selection | url =https://doi.org/10.1177/1359105317695801|journal=Journal of Health Psychology|language=en|volume=22|issue=9|pages=1141–1145|doi=10.1177/1359105317695801|issn=1359-1053}}</ref> This was what Goudsmit found in the clinical trial where the protocol of Ho Yen was tested. The treatment arm also included preemptive rest and some patients said they felt isolated as a result of the prescribed reduction in activity.<ref name=":2" />

Finally, APT proposes pacing as a therapy, while Goudsmit has emphasized the opposite. She explicitly warned that: “both the rationale behind pacing and the findings from controlled trials do not support the promotion by some patient groups of pacing as a “therapy” for CFS. […] given the lack of evidence that this strategy can alleviate a range of symptoms and promote healing, descriptions of pacing as a form of therapy may be construed as misleading.”<ref name=":0" />

The findings of the PACE-trial, analyzed according to the original protocol, did not find a significant difference between APT, specialist medical care, graded exercise therapy or cognitive behavioral therapy. Jason remarked that the label APT, included much more than pacing: “It is important to note that APT (Cox et al., 2004) also included advice on stress management, sleep, and so on, and this makes it difficult to determine what was effective or ineffective if one cannot separate the effects […] the authors evaluated APT, not solely pacing.”<ref name=":13" /> According to Goudsmit and Howes, “the differences between APT and pacing almost certainly explain the discrepancy between the results relating to the former, and the research as well as positive experiences of pacing reported by patients in surveys conducted by support groups.”<ref>{{Cite journal | last = Goudsmit | first = Ellen | last2 = Howes | first2 = Sandra | date = 2017-08-01| title = Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment|url=https://doi.org/10.1177/1359105317707216|journal=Journal of Health Psychology|language=en|volume=22|issue=9|pages=1159–1167|doi=10.1177/1359105317707216|issn=1359-1053}}</ref>
=== Activity pacing-self management ===
Another form of pacing, Activity Pacing Self-Management (APSM) is promoted by the Belgian research group of [[Jo Nijs]], one of the authors of the 2012 consensus document on pacing. His version of pacing is more in line with the tradition of operant conditioning in the chronic pain literature, and less with the principles of energy conservation. According to Nijs, the PACE authors made a mistake by placing pacing and [[Graded exercise therapy|GET]] in opposition to each other, as it is more effective to use both strategies in the treatment of ME/CFS.<ref name=":14">{{Cite journal | last = Kos | first = Daphne | last2 = van Eupen | first2 = Inge | last3 = Meirte | first3 = Jill | last4 = Van Cauwenbergh | first4 = Deborah | last5 = Moorkens | first5 = Greta | last6 = Meeus | first6 = Mira | last7 = Nijs | first7 = Jo| date = Sep 2015 | title = Activity Pacing Self-Management in Chronic Fatigue Syndrome: A Randomized Controlled Trial|url=https://www.ncbi.nlm.nih.gov/pubmed/26356665|journal=The American Journal of Occupational Therapy: Official Publication of the American Occupational Therapy Association|volume=69|issue=5 | pages = 6905290020|doi=10.5014/ajot.2015.016287|issn=1943-7676|pmc=4564796|pmid=26356665}}</ref> Nuñes (2011) also used a pacing approach to physical activity and exercise, with positive results.<ref name="Nunes2011" /> In APSM patients first learn to pace themselves to find a baseline of activity that doesn’t result in relapses. Only if they’ve managed to stabilize their condition - and this might take several weeks - can they proceed to the next phase which aims to gradually increase activities according to time-contingent scheme. In APSM pacing is thus used a stepping stone to graded exercise therapy.

Nijs' research group tested the APSM approach in a 2015 randomized control trial in which the control group received relaxation therapy.<ref name=":14" /> The results were favorable for APSM, though no objective performance measures were used. The study was also rather small as only 16 ME/CFS patients were involved in the experimental group, of which 4 (25%) stopped the treatment prematurely.

{{See also|Graded exercise therapy}}

=== Pacing for chronic pain patients: ===
In 2018, Thomson et al., a research team at the University of Manchester, studied pacing in 114 ME/CFS patients using the Chronic Pain Coping Inventory (CPCI).<ref name=":15">{{Cite journal | last = Thompson | first = D. P. | last2 = Antcliff | first2 = D. | last3 = Woby | first3 = S.R. | date = Mar 2018| title = Symptoms of chronic fatigue syndrome/myalgic encephalopathy are not determined by activity pacing when measured by the chronic pain coping inventory|url=https://www.ncbi.nlm.nih.gov/pubmed/28843450|journal=Physiotherapy|volume=104|issue=1|pages=129–135|doi=10.1016/j.physio.2017.07.005|issn=1873-1465|pmid=28843450}}</ref> In 2001, Nielson et al. had added six questions to this questionnaire to assess the use of pacing.<ref>{{Cite journal | last = Nielson | first = W.R. | last2 = Jensen | first2 = M.P. | last3 = Hill | first3 = M.L. | date=Jan 2001| title = An activity pacing scale for the chronic pain coping inventory: development in a sample of patients with fibromyalgia syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/11166466|journal=Pain|volume=89|issue=2-3|pages=111–115|issn=0304-3959|pmid=11166466}}</ref> As the CPCI was designed for patients with chronic pain, the added pacing section focuses on doing things “slow and steady” and breaking up tasks into manageable pieces, instead on listening to symptom-flare ups and balancing energy expenditure. This form of pacing thus differs significantly form the version promoted by Goudsmit and Jason.

Thomson et al. searched for cross-sectional associations between pacing and levels of pain, disability and fatigue, but made a remarkable choice in outcome measures. For fatigue they used the [[Chalder fatigue scale|Chalder Fatigue Scale]] with Likert score, despite detailed criticism of this method.<ref>{{Cite news | url=https://www.s4me.info/threads/s4me-submission-to-the-public-review-on-common-data-elements-for-me-cfs-problems-with-the-chalder-fatigue-questionnaire.2065/| title = S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire|work=Science for ME|access-date=2018-08-20|language=en-US}}</ref> Disability was assessed using the Fibromyalgia Impact Questionnaire (FIQ) physical impairment subscale, on the basis that ME/CFS- and fibromyalgia patients share many symptoms.

Using these outcome measures, Thompson et al. found no significant associations between pacing and levels of pain, fatigue or disability. In the second part of the study, a smaller sample of 35 ME/CFS patients followed a graded exercise program. Although participants reported significant reductions in fatigue, these improvements were not explained by pacing as measured with the CPCI. According to the authors “It would therefore seem that factors other than pacing were more important determinants of improvements following treatment.”<ref name=":15" />
== Criticism ==

===Focus on symptoms? ===
Some have argued that close monitoring of symptoms might aggravate distress and disability.<ref>{{Cite journal | last = Heins | first = Marianne | last2 = Knoop | first2 = Hans | last3 = Nijs | first3 = Jo | last4 = Feskens | first4 = Remco | last5 = Meeus | first5 = Mira | last6 = Moorkens | first6 = Greta | last7 = Bleijenberg | first7 = Gijs| date = Jun 2013| title = Influence of symptom expectancies on stair-climbing performance in chronic fatigue syndrome: effect of study context|url=https://www.ncbi.nlm.nih.gov/pubmed/22865100|journal=International Journal of Behavioral Medicine|volume=20|issue=2|pages=213–218|doi=10.1007/s12529-012-9253-2|issn=1532-7558|pmid=22865100}}</ref><ref>Dittner, A., & Chalder, T. (2003). Measuring symptoms and fatigue severity. In L.A. Jason., P.A. Fennell., & R.R. Taylor (Eds.), Handbook of chronic fatigue syndrome (pp. 363-383). New Jersey: John Wiley & Sons.</ref> According to Goudsmit & Howes, however “it is important to differentiate between responding to symptoms as one becomes aware of them, an inherent part of pacing, and constant monitoring, which is unnecessary and should be discouraged.”<ref name=":0" />
===Trapped in the envelope?===
Others have argued that pacing might hamper recovery as it lets symptoms of pain and fatigue determine the amount of activity patients do. According to [[Peter White]]: the theoretical risk of pacing is that the patient remains trapped by their symptoms in the envelope of ill health".<ref>{{Cite journal | last = White | first = P. D. | date = Aug 2002| title = Chronic unexplained fatigue|url=https://www.ncbi.nlm.nih.gov/pubmed/12185213|journal=Postgraduate Medical Journal|volume=78|issue=922 | pages = 445–446|issn=0032-5473|pmc=1742445|pmid=12185213}}</ref> Pacing however does not limit the activity of patients, as long as they feel they are up to it. Goudsmit wrote: “my concept of pacing means responding to your symptoms so if you feel OK, there's no reason to stop. If you want to increase your activity levels, you are free to do so as long as you don't over-exert yourself in the process.”<ref name=":1" />
=== Reliance on subjective symptoms instead of objective limits ===
Researchers from the [[Workwell Foundation]] have argued that self-managed pacing puts too much emphasis on the subjective experience of symptoms and that objective limits to avoid relapse are preferable. In 2010 [[Todd Davenport|Davenport]] et al. wrote: <blockquote>“To date, recommendations for pacing self-management in people with CFS/ME have been made on the basis of symptom acuity and irritability. Although these criteria seem to be intuitive, they may fail to account for the rapid changes in function that are characteristic of CFS/ ME. An impaired perception of effort in people with CFS/ME may interfere with the optimal maintenance of symptom-free activity levels if pacing self-management criteria that are based solely on symptomatology are used.”<ref>{{Cite journal | last = Davenport | first = Todd E. | last2 = Stevens | first2 = Staci R. | last3 = VanNess | first3 = Mark J. | last4 = Snell | first4 = Christopher R. | last5 = Little | first5 = Tamara | date = Apr 2010| title = Conceptual model for physical therapist management of chronic fatigue syndrome/myalgic encephalomyelitis|url=https://www.ncbi.nlm.nih.gov/pubmed/20185614|journal=Physical Therapy|volume=90|issue=4 | pages = 602–614|doi=10.2522/ptj.20090047|issn=1538-6724|pmid=20185614}}</ref> </blockquote>As an alternative the authors propose to [[Activity management based on 2-day cardiopulmonary exercise testing results|use a cardiopulmonary exercise test (CPET) to gather information about the patient’s physiology]]. The [[anaerobic threshold]] (AT) in particular can be seen as the boundary where exercise becomes harmful for ME/CFS patients. Davenport et al. suggest that a 10% margin below the estimated heart rate at the AT should be used as an exercise limit. Patients can set a heart rate monitor to make an alarm noise, each time the heart rate exceeds this limit. This might provide more reliable feedback to avoid relapses than the mere perception of muscle weakness originally used in pacing.
A case study by Stevens and Davenport (2010) describes the use of pacing in a patient with CFS using a heart rate set to below the patient's anaerobic threshold; this resulted in significant improvements and reduced periods of over-exertion.<ref name="HRpacing2010" />

===Too much activity? ===
Instead of advising too little activity, some have argued that pacing actually instructs patients to do too much. ME advocate [[Gabby Klein]], for example wrote: “My treating physician - Dr. [[Derek Enlander|Enlander]] - always told me to do 50% of what I think I can do. It was the best advice I got. There is much more potential harm from activity/exercise than from rest.”<ref>{{Cite news | url=https://twitter.com/GabbyKlein1/status/1026561377828306947| title = Gabby Klein on Twitter|work=Twitter|access-date=2018-08-20|language=en}}</ref> ME blogger Sally Burch argued that ME/CFS patients will usually do too much activity, so that the best advice a physician can give, is preemptive rest.<ref>{{Cite news | url=https://twitter.com/KeelaToo/status/1026727305585074176| title = Sally Burch on Twitter|work=Twitter|access-date=2018-08-20|language=en}}</ref> According to Goudsmit and Jason however, advising patients to do less than they could without exacerbating symptoms, might impede them from engaging in meaningful activities such as contact with friends and family. As such, preemptive rest might increase distress and disability.<ref name=":13" />

== Learn more and Pacing Guides ==

=== Factsheets and information ===
*[https://www.meaction.net/resource/pacing-and-management-guide/ Pacing and Management Guide] - MEAction (English, Swedish and Italian versions)
* [http://www.wames.org.uk/pacingweb.pdf Pacing for ME and CFS: a guide for patients by Dr Ellen Goudsmit. Welsh Association of ME & CFS support (WAMES), May 2005.]
* [https://www.prohealth.com/library/pacing-for-me-cfs-the-facts-23836 Pacing for ME/CFS: The Facts. Prohealth.com, January 2007.]
* [http://www.axfordsabode.org.uk/me/pacing.htm Pacing: An additional strategy to manage fatigue in chronic fatigue syndrome] - Ellen M. Goudsmit and Sandra Howes
== Worksheets==
*[https://pacinginfo.weebly.com/worksheets.html Pacing Worksheets] from [[Classic Pacing for a Better Life with ME]], Ingebjørg Midsem Dahl

=== Blogs and articles: ===
* [http://solvecfs.org/wp-content/uploads/2013/06/080505.pdf Solve ME/CFS Initiative - Managing Your Energy Envelope by Bruce Campbell (pdf)]
* [http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope Pacing by Numbers: Using Your Heart Rate To Stay Inside the Energy Envelope by Bruce Campbell.]
* Bruce Campbell, PhD, has included the Envelope Theory in chapter 7 of his manual, ''Recovery from Chronic Fatigue Syndrome: One Person's Story''<ref>http://www.recoveryfromcfs.org/chapter7.htm</ref>
* [[Just ME]] blogger, Sally Burch, has written about self-pacing and the energy envelope in a post called ''"[http://sallyjustme.blogspot.com/2014/09/play-up-and-lay-up.html Play-Up & Lay-Up" not "Boom & Bust"]''.<ref>[http://sallyjustme.blogspot.co.uk/2014/09/play-up-and-lay-up.html "Play-Up & Lay-Up not Boom & Bust]</ref>
* [http://www.healthrising.org/blog/2013/05/17/coping-works-in-chronic-fatigue-syndrome-except-when-it-doesnt-study-suggests-large-group-gets-no-help/ Health Rising - Coping vs Energy Envelope in CFS]
* [https://longcovid.physio/pacing LongCovid.physio article on pacing]

== Books==
*[[Classic Pacing for a Better Life with ME]] - Ingebjørg Midsem Dahl
:Translations into Norweigan and Islandic also available

== Notable studies: ==
* Jason et al. (2008). The Energy Envelope Theory and myalgic encephalomyelitis/chronic fatigue syndrome - [https://www.researchgate.net/publication/5276419_The_Energy_Envelope_Theory_and_myalgic_encephalomyelitischronic_fatigue_syndrome (Full text)]
* Stevens et al. (2010). Functional outcomes of anaerobic rehabilitation in an individual with chronic fatigue syndrome: case report with 1-year follow-up.<ref name="HRpacing2010">{{Cite journal| title = Functional outcomes of anaerobic rehabilitation in an individual with chronic fatigue syndrome: case report with 1-year follow-up|url = http://workwellfoundation.org/wp-content/uploads/2019/07/Functional-Outcomes-of-Anaerobic-Rehabilitation-in-a-Patient-With-Chronic-Fatigue-Syndrome.-Case-Report-With-1-Year-Follow-Up.pdf|journal=Bulletin of the IACFS/ME | date = 2010 | volume =18|issue=3 | pages = 93-98 | last = Stevens | first = Todd E | authorlink = Staci Stevens | last2 = Davenport | authorlink2 = Todd Davenport}}</ref> - [http://workwellfoundation.org/wp-content/uploads/2019/07/Functional-Outcomes-of-Anaerobic-Rehabilitation-in-a-Patient-With-Chronic-Fatigue-Syndrome.-Case-Report-With-1-Year-Follow-Up.pdf (Full text)]
::Pacing using a HR monitor to avoid most over-exertion.
* Nuñez et al (2011). Health-related quality of life in patients with chronic fatigue syndrome: group [[Cognitive behavioral therapy|cognitive behavioural therapy]] and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up<ref name="Nunes2011">{{Cite journal | last = Núñez | first = Montserrat | authorlink = Montserrat Núñez | last2 = Fernández-Solà | first2 = Joaquim | authorlink2 = Joaquim Fernández-Solà | last3 = Nuñez | first3 = Esther | author-link3 = Esther Nuñez | last4 = Fernández-Huerta | first4 = José-Manuel | author-link4 = José-Manuel Fernández-Huerta | last5 = Godás-Sieso | first5 = Teresa | author-link5 = Teresa Godás-Sieso | last6 = Gomez-Gil | first6 = Esther | authorlink6 = Esther Gomez-Gil| date = Mar 2011| title = Health-related quality of life in patients with chronic fatigue syndrome: group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up | url =http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.467.4965&rep=rep1&type=pdf|journal=Clinical Rheumatology|volume=30|issue=3|pages=381–389|doi=10.1007/s10067-010-1677-y|issn=1434-9949|pmid=21234629|quote=|via=}}</ref> - [http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.467.4965&rep=rep1&type=pdf (Full Text)]
* Goudsmit et al. (2012). Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document<ref name=":8" /> - [https://www.researchgate.net/publication/51900061_Pacing_as_a_strategy_to_improve_energy_management_in_myalgic_encephalomyelitischronic_fatigue_syndrome_A_consensus_document (Full text)]
::''Describing graded exercise in comparison with symptom-contingent graded exercise therapy or pacing''
* O'Connor et al. (2017). Energy envelope maintenance among patients with myalgic encephalomyelitis and chronic fatigue syndrome: Implications of limited energy reserves - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5750135/ (Full text)].

==See also==
*[[Activity management based on 2-day cardiopulmonary exercise testing results]]
*[[Bed rest]]
*[[Spoon theory]]
*[[Graded exercise therapy]]
*[[Mindfulness]]
*[[Meditation]]
*[[Pacing with a heart rate monitor]]
*[[Post-exertional malaise]]

== References ==
{{Reflist}}

[[Category:Potential treatments]]
[[Category:Management strategies]]

Pacing

2025-05-13T15:23:32Z

Yakov:/* Blogs and articles: */ Add longcovid.physio page

[[File:What-is-pacing-ME-CFS.png|alt=Pacing is • an activity management strategy • to help ME/CFS patients limit relapses/crashes • while remaining as active as possible|thumb]]
'''Pacing''' is an activity management strategy to help [[ME/CFS]] patients limit the number and severity of relapses while remaining as active as possible. First described by health psychologist [[Ellen Goudsmit]] in 1989,<ref>{{Cite web|url=http://www.axfordsabode.org.uk/me/pacing.htm| title = Pacing: An additional strategy to manage fatigue in chronic fatigue syndrome | last = Goudsmit | first = Ellen M. | authorlink = Ellen Goudsmit | last2 = Howes | first2 = Sandra | authorlink2 = Sandra Howes| date = |website=axfordsabode.org|archive-url=|archive-date=|url-status=|access-date=2019-11-15}}</ref> it gives patients the advice to: “do as much as you can within your limits”.<ref name=":16">{{Cite web|url=http://www.wames.org.uk/pacingweb.pdf| title = Pacing for ME and CFS: a guide for patients | last = Ellen Goudsmit | first = Ellen | authorlink=Ellen Goudsmit | date = May 2005 | website = WAMES|archive-url=|archive-date=|url-status=|access-date=2019-11-15}}</ref> Pacing recognizes research showing an abnormal metabolic and immunological response to exercise in ME/CFS and offers patients a middle ground between [[post-exertional malaise]] and the negative consequences of inactivity.

Pacing has been used as a management strategy in multi-component treatment trials<ref name=":2">Goudsmit, E.M. (1996). The psychological aspects and management of chronic fatigue syndrome. PhD thesis. Department of Psychology. Brunel University, Uxbridge, UK.</ref><ref name=":3">{{Cite journal | last = Goudsmit | first = Ellen M. | last2 = Ho-Yen | first2 = Darrel O. | last3 = Dancey | first3 = Christine P. | date = Nov 2009| title = Learning to cope with chronic illness. Efficacy of a multi-component treatment for people with chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/19576714|journal=Patient Education and Counseling|volume=77|issue=2|pages=231–236|doi=10.1016/j.pec.2009.05.015|issn=1873-5134|pmid=19576714}}</ref><ref name=":4">{{Cite journal | last = Taylor | first = Renée R. | date = Jan 2004| title = Quality of life and symptom severity for individuals with chronic fatigue syndrome: findings from a randomized clinical trial|url=https://www.ncbi.nlm.nih.gov/pubmed/14763634|journal=The American Journal of Occupational Therapy: Official Publication of the American Occupational Therapy Association|volume=58|issue=1|pages=35–43|issn=0272-9490|pmid=14763634 | last2 = | first2 = |doi=|pmc=|quote= | author-link = Renee Taylor | authorlink2 = |access-date=|via=}}</ref> and in several large patient surveys the majority of respondents found pacing to be helpful.<ref name=":5">1999 Chronicle Reader Survey. Charlotte, NC: CFIDS Association of America. CFIDS Chronicle. 1999;12(4):9.</ref><ref name=":6">Action for M.E. Severely Neglected: M.E. in the UK—Membership Survey. London: Action for M.E.; 2001.</ref><ref name=":7">ME Association. [https://www.meassociation.org.uk/wp-content/uploads/2015-ME-Association-Illness-Management-Report-No-decisions-about-me-without-me-30.05.15.pdf “No decisions about me without me”. ME/CFS illness management survey results, part 1.] Gawcott, Bucks (England), (2015).</ref> Pacing has been suggested by the CDC<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/treatment/index.html| title = Treatment {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-05-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-08-19}}</ref> and 2007 NICE guidelines<ref>National Institute for Health and Care Excellence. [https://www.nice.org.uk/guidance/cg53/resources/chronic-fatigue-syndromemyalgic-encephalomyelitis-or-encephalopathy-diagnosis-and-management-pdf-975505810885 Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management Clinical guideline (CG53).] August 2007.</ref> as an effective component in the treatment of patients with ME/CFS.

== History ==

===In ME/CFS ===
Pacing was developed as an energy management strategy for ME-patients in the [[United Kingdom|UK]] in the 1980s.<ref name=":8">{{Cite journal | last = Goudsmit | first = Ellen M. | last2 = Nijs | first2 = Jo | last3 = Jason | first3 = Leonard A. | 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|pmc=|quote= | author-link = Ellen Goudsmit | authorlink2 = Jo Nijs|access-date= | authorlink3 = Leonard Jason | authorlink4 = | authorlink5 = |via=}}</ref> Health psychologist [[Ellen Goudsmit]] had suffered from post viral syndrome herself<ref name=":16" /> the decade before and noticed how patients had to learn through trial and error how to pace themselves. Patients were forced to discover through their own frustrating experience how to stay as active as possible within the limits the disease had imposed upon them. This resulted in many unnecessary relapses. In order to prevent these, Goudsmit worked out her own approach into an advice that could be used by others. In the 1990s pacing was promoted in factsheets by various ME-groups in the UK.<ref name=":9">{{Cite news | url=https://www.prohealth.com/library/pacing-for-me-cfs-the-facts-23836| title = Pacing for ME/CFS: The Facts - Prohealth| date = 2007-01-17|work=Prohealth|access-date=2018-08-19|language=en-US}}</ref> Around the same time, [[Leonard Jason]], a professor of psychology at the University of Chicago who also suffered from a post-viral fatigue syndrome,<ref>{{Cite web|url=http://www.northbynorthwestern.com/story/arrested-development/| title = Feeling fatigued: studying CFS at Northwestern|website=northbynorthwestern.com|language=en|access-date=2018-08-19}}</ref> developed the [[Energy Envelope Theory|envelope theory]] along the same principles of energy conservation.<ref>{{Cite journal | last= Jason | first = L. A. | last2 = Melrose | first2 = H. | last3 = Lerman | first3 = A. | last4 = Burroughs | first4 = V. | last5 = Lewis | first5 = K. | last6 = King | first6 = C.P. | last7 = Frankenberry | first7 = E.L. | date=Jan 1999| title = Managing chronic fatigue syndrome: overview and case study|url=https://www.ncbi.nlm.nih.gov/pubmed/10205371|journal=AAOHN journal: official journal of the American Association of Occupational Health Nurses|volume=47|issue=1|pages=17–21|issn=0891-0162|pmid=10205371}}</ref> A decade earlier ME-expert Melvin Ramsay had written about the benefits of implementing sufficient rest periods: <blockquote>"One can hold out no specific cure for the illness but advice should immediately be given that they adapt their lives to a quieter tempo and take adequate periods of complete rest after physical exertion." </blockquote>

=== In other conditions ===
The term pacing has a longer history in the management of other chronic conditions, though its meaning is ambiguous. Two main traditions exist.<ref>{{Cite journal | last = Nielson | first = Warren R. | last2 = Jensen | first2 = Mark P. | last3 = Karsdorp | first3 = Petra A. | last4 = Vlaeyen | first4 = Johannes W.S. | date = May 2013| title = Activity pacing in chronic pain: concepts, evidence, and future directions|url=https://www.ncbi.nlm.nih.gov/pubmed/23247005|journal=The Clinical Journal of Pain|volume=29|issue=5 | pages = 461–468|doi=10.1097/AJP.0b013e3182608561|issn=1536-5409|pmid=23247005}}</ref> In the first, pacing is used in the context of energy conservation, a common element in the treatment of autoimmune and neurological disorders such as rheumatoid arthritis<ref>{{Cite journal | last = Furst | first = G. P. | last2 = Gerber | first2 = L.H. | last3 = Smith | first3 = C.C. | last4 = Fisher | first4 = S. | last5 = Shulman | first5 = B. | date = Feb 1987| title = A program for improving energy conservation behaviors in adults with rheumatoid arthritis|url=https://www.ncbi.nlm.nih.gov/pubmed/3565525|journal=The American Journal of Occupational Therapy: Official Publication of the American Occupational Therapy Association|volume=41|issue=2|pages=102–111|issn=0272-9490|pmid=3565525}}</ref> or [[Multiple sclerosis|MS.]]<ref>{{Cite journal | last = Mathiowetz | first = Virgil G. | last2 = Finlayson | first2 = Marcia L. | last3 = Matuska | first3 = Kathleen M. | last4 = Chen | first4 = Hua Yun | last5 = Luo | first5 = Ping| date = Oct 2005| title = Randomized controlled trial of an energy conservation course for persons with multiple sclerosis|url=https://www.ncbi.nlm.nih.gov/pubmed/16193899|journal=Multiple Sclerosis (Houndmills, Basingstoke, England)|volume=11|issue=5 | pages = 592–601|doi=10.1191/1352458505ms1198oa|issn=1352-4585|pmid=16193899}}</ref> Energy conservation includes balancing activity and rest, setting priorities, delegating tasks and using assistive devices such a wheelchair. This form of energy management is similar to the principles of pacing used in ME/CFS.

Pacing is however more frequently used in the context of chronic pain where it has a background in operant conditioning. First described by Wilbert Fordyce in 1976,<ref>Fordyce WE. Behavioural methods for chronic pain and illness. Mosby: St. Louis; 1976</ref> pacing referred to a time-contingent and gradual increase of activity levels. Fordyce’s main idea was that chronic pain patients shouldn’t be directed by their symptoms but by plans, goals and targets. In this context, pacing referred to the careful planned route, based on positive reinforcements instead of the fear of pain, to reach those goals.<ref>{{Cite journal | last = Gill | first = Joanna R. | last2 = Brown | first2 = Cary A. | date = Feb 2009| title = A structured review of the evidence for pacing as a chronic pain intervention | url =https://www.ncbi.nlm.nih.gov/pubmed/18448368|journal=European Journal of Pain (London, England)|volume=13|issue=2|pages=214–216|doi=10.1016/j.ejpain.2008.03.011|issn=1532-2149|pmid=18448368}}</ref> Often a task was broken up into manageable parts or quotas so the patient can go forward step by step with breaks in between. Although the principles of operant conditioning are no longer central, in the chronic pain literature pacing still frequently refers to a planned and gradual increase of activity levels. Pacing means doing things “slow but steady”,<ref>{{Cite journal | last = Nielson | first = W.R. | last2 = Jensen | first2 = M.P. | last3 = Hill | first3 = M.L. | date=Jan 2001| title = An activity pacing scale for the chronic pain coping inventory: development in a sample of patients with fibromyalgia syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/11166466|journal=Pain|volume=89|issue=2-3|pages=111–115|issn=0304-3959|pmid=11166466}}</ref> by splitting up activities in smaller parts, and without discontinuation if the patient is having a bad day. This form of pacing is quite dissimilar and sometimes even contrary to the form of pacing used in ME/CFS.

{| class="wikitable"
! colspan="5" |Definitions of pacing used in the chronic pain literature
|-
|Kavanagh (1995)<ref>Kavanagh J (1995) Management of chronic pain using the cognitive-behavioural approach. British Journal of Therapy and Rehabilitation, 2(8), 413-18</ref>
|Birkholtz & Aylwin (2000)<ref>Birkholtz M, Aylwin L (2000) OT in chronic pain management: a specialist area. Occupational Therapy News, 8(11), 26-27.</ref>
|Strong et al. (2002)<ref>Strong J, Unruh AM, Baxter GD. Pain: a textbook for therapists. Toronto: Churchill Livingstone; 2002.</ref>
|Nielson et al. (2013)<ref>{{Cite journal | last = Nielson | first = Warren R. | last2 = Jensen | first2 = Mark P. | last3 = Karsdorp | first3 = Petra A. | last4 = Vlaeyen | first4 = Johannes W.S. | date = May 2013| title = Activity pacing in chronic pain: concepts, evidence, and future directions|url=https://www.ncbi.nlm.nih.gov/pubmed/23247005|journal=The Clinical Journal of Pain|volume=29|issue=5 | pages = 461–468|doi=10.1097/AJP.0b013e3182608561|issn=1536-5409|pmid=23247005}}</ref>
|Jamieson-Lega et al. (2013)<ref>{{Cite journal | last= Jamieson-Lega | first = Kathryn | last2 = Berry | first2 = Robyn | last3 = Brown | first3 = Cary A| date = 2013 | title = Pacing: A concept analysis of a chronic pain intervention | url =https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3812193/|journal=Pain Research & Management : The Journal of the Canadian Pain Society|volume=18|issue=4|pages=207–213|issn=1203-6765|pmc=3812193|pmid=23717825}}</ref>
|-
|“Pacing involves breaking down activities into smaller steps, resting between steps and doing small amounts regularly rather than a large amount of activity in one go.”
|“Activity pacing consists of (a) changing position to time, (b) taking frequent short rests, (c) breaking tasks into manageable bits, (d) alternating positions and tasks frequently, (e) slowing down, and (f) increasing activity amounts gradually.”
|“introducing tasks in a graded manner, in order for the client to build skills, confidence and tolerance for the activity, so that activity levels can be increased”
|“Activity pacing is the regulation of activity level and/or rate in the service of an adaptive goal or goals.”
|“Pacing is an active self-management strategy whereby individuals learn to balance time spent on activity and rest for the purpose of achieving increased function and participation in meaningful activities.”
|}

== The principles of pacing ==

=== Stop before you overdo it ===
The aim of pacing in ME/CFS is to remain as active as possible while avoiding the relapses resulting from overexertion.<ref name=":0">{{Cite journal|last = Goudsmit | first = EM | authorlink = Ellen Goudsmit | last2 =Howes | first2 =S|url = http://www.axfordsabode.org.uk/me/pacing.htm| title = Pacing: a strategy to improve energy management in chronic fatigue syndrome|journal =Health Psychol Update | date = 2008|volume =17|pages =46–52}}</ref> This requires an understanding of the relationship between symptoms and exertion. Patients have to learn to recognize symptoms of [[post-exertional malaise]] and reduce their activities in time, in order to avoid relapses. This can mean that activities have to be limited and structured per day such as washing one day and cooking the next. It also means activities have to be stopped (sometimes abruptly) before they are completed, which can be frustrating and difficult to master.

=== No plans or targets but internal cues ===
In contrast to graded exercise therapy, pacing does not rely on plans, targets or goals, but on how patients feel. As one writer poetically described it: “pacing is not a static decision but necessarily fluctuates with the monitoring of the physiological imperative.”<ref>Wiener CL. The burden of rheumatoid arthritis. In: Straus AL, Corbin J, Fagerhaugh S, Glaser BG, Maines D, Suczek B, Wiener CL, editors. Chronic illness and the quality of life. 2nd ed. St. Louis: The CV Mosby Company; 1984. p 94.</ref> Rest is advised at the first signs of muscle weakness. According to [[Ellen Goudsmit|Goudsmit]] & [[Sandra Howes|Howes]] cognitive tasks form the major exception where a time-contingent approach might be more helpful.<ref name=":0" /> Because cognitive activities such as reading provide few internal cues to detect overexertion, it might be useful to use a timer to restrict energy expenditure.

=== Switching ===
A component that has been added to pacing is called switching. This refers to changing activities in order to avoid tiring specific muscles.<ref name=":9" /> As Goudsmit explains: <blockquote>“For instance, if you've been reading for a while, stop before your eye muscles get tired and do something which involves a different muscle group, e.g. walking, washing clothes, eating, talking. Do that for a while (stop before you reach your limit), and then switch again (you can even go back to reading).”<ref name=":1">[http://www.wames.org.uk/pacingweb.pdf Pacing for ME and CFS: a guide for patients by Dr Ellen Goudsmit]. Wames. May 2005. </ref></blockquote>Rest periods can be inserted between each change of activity.

=== Use of a diary or activity tracker ===
Another advice that is often part of pacing is to keep a diary where information about activity levels, stressful events and symptom flare-ups can be recorded. This might help patients to understand the relation between overexertion and symptoms. Abbreviations and scoring systems can be used to limit the energy needed to fill in the diary. Other patients find it helpful to use an activity tracker<ref>{{Cite web|url=http://cfsrecovery.blogspot.com/2013/01/me-cfs-cfids-and-activity-monitoring.html| title = Come with M.E. on a journey: ME CFS CFIDS and activity monitoring | last = Beauts| date = 2013-01-05 | website = Come with M.E. on a journey|access-date=2018-08-19}}</ref> to obtain more reliable information on the amount of energy they’ve spent each day and how this corresponds with their state of health.

=== Increase activity when you are ready ===
Pacing is about figuring out how much one can do without triggering a relapse. If patients feel their health has stabilized or improved and they no longer experience setbacks, it might be helpful to gradually increase activities to see how it goes. In a consensus document about pacing, [[Ellen Goudsmit|Goudsmit]] & [[Leonard Jason|Jason]] wrote: <blockquote>“If increases in activity do not result in symptom flare-ups for three months and patients feel that they are close to about 60 to 70% of their former functioning, they may wish to change to a gentle form of graded exercise therapy (GET), starting at a low level and increasing incrementally in duration and intensity to further increase their fitness and tolerance thresholds.”<ref name=":8" /></blockquote>One of the other authors of this consensus document, Karen Wallman, tested a symptom-contingent form of graded exercise in a randomized controlled trial in 2004. Patients were allowed to stop or do less if their symptoms became worse while increases in exercise were only advised if patients felt they were coping with the current activity level. After 12 weeks of 'graded exercise with pacing', patients showed improvement on objective outcome measures such as blood lactate production and performance on a Stroop colour word test.<ref>{{Cite journal | last = Wallman | first = Karen E. | last2 = Morton | first2 = Alan R. | last3 = Goodman | first3 = Carmel | last4 = Grove | first4 = Robert | last5 = Guilfoyle | first5 = Andrew M. | date = 2004-05-03| title = Randomised controlled trial of graded exercise in chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/15115421|journal=The Medical Journal of Australia|volume=180|issue=9 | pages = 444–448|issn=0025-729X|pmid=15115421}}</ref>

=== Not a Therapy ===
Pacing often is a helpful coping strategy for patients with ME/CFS, but it is not a therapy. It does not claim to alleviate the many symptoms of ME/CFS such as sore throat or light sensitivity. Pacing is not so much a treatment as a way of energy management for patients with ME/CFS. It is usually one component of a multidisciplinary program for ME/CFS patients that may also include information about the disease, emotional support or advice on nutrition. Because pacing does not require specialist training, its basic principles can be counseled by a GP or nurse.<ref name=":8" />
== Scientific evidence ==

===In ME/CFS ===
Pacing has been used in several multi-component treatment trials. In 1996 Goudsmit conducted a controlled trial for patients with post-infectious fatigue syndrome. Pacing was one component of a multidisciplinary treatment protocol prescribed by Darrel O. Ho-Yen<ref>Ho-Yen DO. Better recovery from viral illnesses. 3rd ed. Inverness: Dodona Books, 1993.</ref> which also included medical care, emotional support and advice on avoiding stress. More than 80% of patients reported feeling better. At 6 months there was a significant difference between controls on outcome measures such as fatigue or self-efficacy. Twenty-three percent of the patients had improved to such a degree that they were discharged.<ref name=":2" /><ref name=":3" />

In 2004 [[Renee Taylor]] offered a similar multidisciplinary program to 47 ME/CFS-patients in a randomized clinical trial.<ref name=":4" /> This study was part of the Chronic Fatigue Syndrome Empowerment project, a federally funded research project designed to develop and evaluate the effects of a consumer-driven rehabilitation program for individuals with chronic fatigue syndrome. Participants received four months of illness management groups followed by seven month one-on-one self-advocacy training. Besides pacing the program focused on economic self-sufficiency, coping skills and nutritional advice. Results indicated that overall quality of life had significant improved in the treatment group – a remarkable finding, since trials on cognitive behavioral therapy or graded exercise therapy, often fail to improve quality of life in ME/CFS patients.<ref>{{Cite book | url =https://www.ncbi.nlm.nih.gov/books/NBK379582/| title = July 2016 Addendum | last = Smith | first = M. E. Beth | last2 = Nelson | first2 = Heidi D. | last3 = Haney | first3 = Elizabeth | last4 = Pappas | first4 = Miranda | last5 = Daeges | first5 = Monica | last6 = Wasson | first6 = Ngoc | last7 = McDonagh | first7 = Marian | date = Dec 2014|publisher=Agency for Healthcare Research and Quality (US)|language=en}}</ref>

Further evidence supporting pacing, comes from research on the [[Energy Envelope Theory|envelope theory]], an energy management strategy developed by Leonard Jason which is based on similar principles. Patients are advised to stay within the envelope; meaning the limits the disease has imposed upon them. Patients who over-exert themselves are advised to cut back while those who have been inactive for a long time are encouraged to gradually increase their activity. An analysis of the activity pattern of 144 ME/CFS patients showed that those who extend their activities beyond their energy envelope, experience more disability.<ref>{{Cite journal | last= Jason | first = Leonard | last2 = Muldowney | first2 = Kathleen | last3 = Torres-Harding | first3 = Susan | date = May 2008| title = The Energy Envelope Theory and myalgic encephalomyelitis/chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/18578185|journal=AAOHN journal: official journal of the American Association of Occupational Health Nurses|volume=56|issue=5|pages=189–195|issn=0891-0162|pmid=18578185}}</ref> These results were confirmed in a larger 2017 study involving 429 patients from different locations.<ref name=":10">{{Cite journal | last = O'Connor | first = Kelly | last2 = Sunnquist | first2 = Madison | last3 = Nicholson | first3 = Laura | last4 = Jason | first4 = Leonard A. | last5 = Newton | first5 = Julia L. | last6 = Strand | first6 = Elin B. | date = 2017-01-01| title = Energy envelope maintenance among patients with myalgic encephalomyelitis and chronic fatigue syndrome: Implications of limited energy reserves|url=https://www.ncbi.nlm.nih.gov/pubmed/29231037|journal=Chronic Illness|pages=1742395317746470|doi=10.1177/1742395317746470|issn=1745-9206|pmc=5750135|pmid=29231037}}</ref> Furthermore, a prospective study of 44 patients who were part of a study on nonpharmacological interventions in ME/CFS, showed that “those who were within their energy envelope before treatment showed more improvement in physical functioning and fatigue compared to those outside of their energy envelope."<ref name=":11">{{Cite journal | last = Brown | first = Molly | last2 = Khorana | first2 = Neha | last3 = Jason | first3 = Leonard A. | date = Mar 2011| title = The Role of Changes in Activity as a Function of Perceived Available and Expended Energy in Non-Pharmacological Treatment Outcomes for ME/CFS|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3164291/|journal=Journal of clinical psychology|volume=67|issue=3|pages=253–260|doi=10.1002/jclp.20744|issn=0021-9762|pmc=3164291|pmid=21254053}}</ref>

In several large patient surveys, respondents indicated they’ve found pacing to be helpful in managing ME/CFS. A 1999 survey (n = 820) by the CFIDS Association of America (now Solve ME/CFS initiative) showed that 71% of patients rated pacing as helpful.<ref name=":5" /> In a survey conducted by Action for ME (n = 2338) in 2001, 89% of the respondents found pacing to be helpful.<ref name=":6" /> These results were confirmed in a follow-up study by Action for ME in 2008.<ref>{{Cite web|url=https://afme.wordpress.com/category/survey-2008/| title = Survey 2008 « Action for M.E.|website=afme.wordpress.com|language=en|access-date=2018-08-19}}</ref>

{| class="wikitable"
! colspan="7" |Action for M.E.’s survey results on treatments in 2001 and 2008<ref name=":12">[https://www.actionforme.org.uk/uploads/pdfs/pacing-for-people-with-me-booklet.pdf Pacing for people with ME]. Action for ME. December 2013.</ref>
|-
!
! colspan="2" |Helpful
! colspan="2" |No change
! colspan="2" |Made Worse
|-
|
|2001 survey
|2008 survey
|2001 survey
|2008 survey
|2001 survey
|2008 survey
|-
|Pacing
|89%
|82%
|9%
|15%
|2%
|3%
|-
|CBT
|7%
|50%
|67%
|38%
|26%
|12%
|-
|GET
|34%
|45%
|16%
|21%
|50%
|34%
|}
Another large survey set up by the ME Association (n =1428) showed patients preferred pacing over CBT or GET and judged this approach to be more appropriate to their needs. The survey concluded: <blockquote>“Pacing was consistently shown to be the most effective, safe, acceptable and preferred form of activity management for people with ME/CFS and should therefore be a key component of any illness management programme […]The benefit of Pacing may relate to helping people cope and adapt to their illness rather than contributing to a significant improvement in functional status.”<ref name=":7" /> </blockquote>

=== In the treatment of chronic pain ===
While pacing is a highly endorsed clinical strategy in the treatment of chronic pain, empirical evidence to support its effectiveness is currently lacking. Raichel et al. for example found that pacing was correlated with higher levels of pain interference in 157 patients with spinal cord injury.<ref>{{Cite journal | last = Raichle | first = Katherine A. | last2 = Hanley | first2 = Marisol | last3 = Jensen | first3 = Mark P. | last4 = Cardenas | first4 = Diana D. | date = Sep 2007| title = Cognitions, Coping and Social Environment Predict Adjustment to Pain in Spinal Cord Injury|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2045649/|journal=The journal of pain : official journal of the American Pain Society|volume=8|issue=9 | pages = 718–729|doi=10.1016/j.jpain.2007.05.006|issn=1526-5900|pmc=2045649|pmid=17611163}}</ref> In a study by Ersek et al. pacing was positively associated with physical disability and pain intensity in the elderly.<ref>{{Cite journal | last = Ersek | first = Mary | last2 = Turner | first2 = Judith A. | last3 = Kemp | first3 = Carol A. | date = Nov 2006| title = Use of the chronic pain coping inventory to assess older adults' pain coping strategies|url=https://www.ncbi.nlm.nih.gov/pubmed/17074625|journal=The Journal of Pain: Official Journal of the American Pain Society|volume=7|issue=11 | pages = 833–842|doi=10.1016/j.jpain.2006.04.002|issn=1526-5900|pmid=17074625}}</ref> Kindermans et al. reported a correlation between pacing and higher levels of disability and symptoms of depression. According to the authors, “this seems to suggest that pacing, as it is currently measured, might reflect a (hidden) form of avoidance behavior.”<ref>{{Cite journal | last = Kindermans | first = Hanne P. J. | last2 = Roelofs | first2 = Jeffrey | last3 = Goossens | first3 = Marielle E. J.B. | last4 = Huijnen | first4 = Ivan P.J. | last5 = Verbunt | first5 = Jeanine A. | last6 = Vlaeyen | first6 = Johan W.S. | date = Oct 2011| title = Activity patterns in chronic pain: underlying dimensions and associations with disability and depressed mood | url =https://www.ncbi.nlm.nih.gov/pubmed/21704568|journal=The Journal of Pain: Official Journal of the American Pain Society|volume=12|issue=10|pages=1049–1058|doi=10.1016/j.jpain.2011.04.009|issn=1528-8447|pmid=21704568}}</ref> Using accelerometers to track activity levels, Cuperus et al. were able to demonstrate in a more objective manner that pacing was associated with lower activity. This led the authors to conclude that “activity pacing might not only be ineffective, it might even be potentially harmful, as inactivity-related comorbidities increase the risk for mortality and negatively influence quality of life.”<ref>{{Cite journal | last = Cuperus | first = Nienke | last2 = Hoogeboom | first2 = Thomas J. | last3 = Neijland | first3 = Yvette | last4 = van den Ende | first4 = Cornelia Hm | last5 = Keijsers | first5 = Noël Lw| date = Nov 2012| title = Are people with rheumatoid arthritis who undertake activity pacing at risk of being too physically inactive?|url=https://www.ncbi.nlm.nih.gov/pubmed/22327885|journal=Clinical Rehabilitation|volume=26|issue=11|pages=1048–1052|doi=10.1177/0269215512437417|issn=1477-0873|pmid=22327885}}</ref> In a 2012 review Andrews et al. concluded that “pacing was generally linked to better psychological functioning but more pain and disability.”<ref>{{Cite journal | last = Andrews | first = Nicole E. | last2 = Strong | first2 = Jenny | last3 = Meredith | first3 = Pamela J. | date = Nov 2012| title = Activity pacing, avoidance, endurance, and associations with patient functioning in chronic pain: a systematic review and meta-analysis|url=https://www.ncbi.nlm.nih.gov/pubmed/22728699|journal=Archives of Physical Medicine and Rehabilitation|volume=93|issue=11|pages=2109–2121.e7|doi=10.1016/j.apmr.2012.05.029|issn=1532-821X|pmid=22728699}}</ref>

Since then, several explanations have been put forward to explain these bleak results. Susan Murphy argued that there might be a difference between how patients and clinicians view pacing. According to Murphy patients' intrinsic view on pacing is mostly symptom-contingent and directed at reducing pain, while those of clinicians is time-contingent and aimed at increasing activity levels.<ref>{{Cite journal | last = Murphy | first = Susan Lynn | last2 = Kratz | first2 = Anna Louise | date = Dec 2014| title = Activity pacing in daily life: A within-day analysis|url=https://www.ncbi.nlm.nih.gov/pubmed/25267209|journal=Pain|volume=155|issue=12|pages=2630–2637|doi=10.1016/j.pain.2014.09.028|issn=1872-6623|pmc=4353388|pmid=25267209}}</ref> An appropriate assessment of pacing should thus occur after instructions by a clinician, to account for these differences.<ref>{{Cite journal | last = Murphy | first = Susan L. | last2 = Clauw | first2 = Daniel J. | date = Jun 2010| title = Activity pacing: what are we measuring and how does that relate to intervention?|url=https://www.ncbi.nlm.nih.gov/pubmed/20381246|journal=Pain|volume=149|issue=3 | pages = 582–583|doi=10.1016/j.pain.2010.03.031|issn=1872-6623|pmid=20381246}}</ref> Murphy also suggested pacing should be tailored to the individual patient by using physiological measures obtained during an exercise test, as targets.<ref>{{Cite journal | last = Murphy | first = Susan L. | last2 = Lyden | first2 = Angela K. | last3 = Smith | first3 = Dylan M. | last4 = Dong | first4 = Qian | last5 = Koliba | first5 = Jessica F. | date = Nov 2010| title = Effects of a tailored activity pacing intervention on pain and fatigue for adults with osteoarthritis|url=https://www.ncbi.nlm.nih.gov/pubmed/21218677|journal=The American Journal of Occupational Therapy: Official Publication of the American Occupational Therapy Association|volume=64|issue=6 | pages = 869–876|issn=0272-9490|pmc=3655423|pmid=21218677}}</ref> Her ideas were tested in a large trial of 193 patients with osteoarthritis, but once again results were disappointing. Both the general and tailored pacing group, were worse off than the patient group receiving usual care.<ref>{{Cite journal | last = Murphy | first = Susan L. | last2 = Kratz | first2 = Anna L. | last3 = Kidwell | first3 = Kelley | last4 = Lyden | first4 = Angela K. | last5 = Geisser | first5 = Michael E. | last6 = Williams | first6 = David A. | date = Jul 2016| title = Brief time-based activity pacing instruction as a singular behavioral intervention was not effective in participants with symptomatic osteoarthritis|url=https://www.ncbi.nlm.nih.gov/pubmed/26963847|journal=Pain|volume=157|issue=7|pages=1563–1573|doi=10.1097/j.pain.0000000000000549|issn=1872-6623|pmc=4912409|pmid=26963847}}</ref>

Because some studies<ref>{{Cite journal | last = Nielson | first = Warren R. | last2 = Jensen | first2 = Mark P. | date = Jun 2004| title = Relationship between changes in coping and treatment outcome in patients with Fibromyalgia Syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/15157683|journal=Pain|volume=109|issue=3|pages=233–241|doi=10.1016/j.pain.2004.01.002|issn=0304-3959|pmid=15157683}}</ref><ref>{{Cite journal | last = Cane | first = Douglas | last2 = Nielson | first2 = Warren R. | last3 = McCarthy | first3 = Mary | last4 = Mazmanian | first4 = Dwight | date = May 2013| title = Pain-related activity patterns: measurement, interrelationships, and associations with psychosocial functioning | url =https://www.ncbi.nlm.nih.gov/pubmed/23247000|journal=The Clinical Journal of Pain|volume=29|issue=5 | pages = 435–442|doi=10.1097/AJP.0b013e31825e452f|issn=1536-5409|pmid=23247000}}</ref> did find positive results for pacing in the treatment of chronic pain conditions, Deborah Antcliff argued that the term pacing, denotes several different aspects. In the Activity Pacing Questionnaire (APQ), the questionnaire she helped develop, 5 factors were differentiated: activity adjustment, activity consistency, activity progression, activity planning, and activity acceptance.<ref>{{Cite journal | last = Antcliff | first = Deborah | last2 = Campbell | first2 = Malcolm | last3 = Woby | first3 = Steve | last4 = Keeley | first4 = Philip| date = Sep 2015 | title = Assessing the Psychometric Properties of an Activity Pacing Questionnaire for Chronic Pain and Fatigue|url=https://www.ncbi.nlm.nih.gov/pubmed/25908522|journal=Physical Therapy|volume=95|issue=9|pages=1274–1286|doi=10.2522/ptj.20140405|issn=1538-6724|pmc=4556956|pmid=25908522}}</ref> Research by Antcliff suggested that adjustment, acceptance and progression were associated with worsened symptoms, while consistency was correlated with improved symptoms.<ref>Antcliff DC. (2014). [https://www.escholar.manchester.ac.uk/api/datastream?publicationPid=uk-ac-man-scw:227500&datastreamId=FULL-TEXT.PDF The development of an activity pacing questionnaire for chronic pain and fatigue.] Phd thesis. Faculty of Medical and Human Sciences, University of Manchester. </ref> This has pushed Antcliff to promote the use of a time-contingent graded increase in activity levels, as an essential element in the definition of pacing.<ref>{{Cite journal | last = Antcliff | first = Deborah | last2 = Keeley | first2 = Philip | last3 = Campbell | first3 = Malcolm | last4 = Woby | first4 = Steve | last5 = Keenan | first5 = Anne-Maree | last6 = McGowan | first6 = Linda | date = Jul 2018| title = Activity pacing: moving beyond taking breaks and slowing down | url =https://www.ncbi.nlm.nih.gov/pubmed/29396652|journal=Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation|volume=27|issue=7|pages=1933–1935|doi=10.1007/s11136-018-1794-7|issn=1573-2649|pmc=5997723|pmid=29396652}}</ref>

== Other forms of pacing used in ME/CFS ==

=== Energy Envelope Theory ===
{{Main article|page_name=Energy Envelope Theory}}<div role="note" class="hatnote navigation-not-searchable">{{Main article|page_name=Energy Envelope Theory}}</div>

[[Leonard Jason]]'s [[Energy Envelope Theory|energy envelope theory]] is very similar to pacing. Patients are advised to stay within their envelope; meaning the limits the disease has imposed upon them. According to Jason: "the phrase, 'staying within the envelope' is used to designate a comfortable range of energy expenditure, in which an individual avoids both over-exertion and under-exertion, maintaining an optimal level of activity over time.”<ref>{{Cite journal | last= Jason | first = Leonard | last2 = Benton | first2 = Mary | date = Nov 2009| title = The Impact of Energy Modulation on Physical Functioning and Fatigue Severity among Patients with ME/CFS|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2767446/|journal=Patient education and counseling|volume=77|issue=2|pages=237–241|doi=10.1016/j.pec.2009.02.015|issn=0738-3991|pmc=2767446|pmid=19356884}}</ref> Research has shown that ME/CFS patients who go beyond their envelope and spent more energy than they estimate to have, experience more symptoms over time.<ref name=":10" /><ref name=":11" />

===Adaptive pacing therapy (APT) ===
A modified form of pacing is called adapative pacing therapy (APT). This version was promoted by [[Action for ME]]<ref name=":12" /> and was used in the [[PACE trial]]<ref>Cox et al. (2004) [https://www.qmul.ac.uk/wolfson/media/wolfson/current-projects/2.apt-participant-manual.pdf Manual for participants Adaptive Pacing Therapy for CFS/ME.] </ref> as an alternative to [[cognitive behavioral therapy]], [[graded exercise therapy]] and specialist medical care. There are some major differences between APT and the original form of pacing advocated by Goudsmit. The former for example stresses splitting up activities, while this is not necessarily an advice used in the latter. APT seems more influenced by chronic pain literature as it gives more weight to planning and building up activities. A booklet on pacing, produced by Action for ME explains to patients: “you are likely to notice a temporary increase in stiffness or fatigue when increasing your activity levels. This is normal and your body will need a few days to adjust and adapt.”<ref name=":12" /> No such advice is given in the pacing, developed by Goudsmit or Jason as this may not be adequate in the treatment of patients with ME/CFS. One of the (anonymous) participants in the 2015 ME association survey, for example, complained that pacing put too much emphasis on increasing activity:<blockquote>"It taught me to listen to my body and not ignore symptoms and I gradually began to see the link between exercise/activity and delayed fatigue, which I hadn't done beforehand. That was crucial in slowing down my deterioration. But I wish someone had said 'if you are experiencing symptoms you should rest' – the message was, 'you can get worse briefly but symptoms should then go again'. I kept waiting for them to go and they never did. Then I had a massive relapse which I have not recovered from. Pacing is not very satisfactory – it is full of confusing contradictory messages […] I felt the emphasis was too heavily on increasing activity – I should have been told to rest.”<ref name=":7" /></blockquote>These criticisms seem to apply to APT, and not to pacing.

Another major difference is that APT promotes the use of preemptive rest. In the [[PACE trial]] for example patients were advised to follow the 70%-rule, meaning they shouldn’t go beyond 70% of their perceived energy. This is also not an element in the writings of Goudsmit or Jason, where patients are advised to correctly balance perceived energy and energy expenditure. Telling ME/CFS patients to do even less than their perceived energy limit might have negative consequences, as was noticed by Leonard Jason: “By doing less than what patients have the energy to do, and the resulting preemptive rest, this intervention could even have the unwitting effects of increasing social isolation.”<ref name=":13">{{Cite journal | last= Jason | first = Leonard A| date = 2017-08-01| title = The PACE trial missteps on pacing and patient selection | url =https://doi.org/10.1177/1359105317695801|journal=Journal of Health Psychology|language=en|volume=22|issue=9|pages=1141–1145|doi=10.1177/1359105317695801|issn=1359-1053}}</ref> This was what Goudsmit found in the clinical trial where the protocol of Ho Yen was tested. The treatment arm also included preemptive rest and some patients said they felt isolated as a result of the prescribed reduction in activity.<ref name=":2" />

Finally, APT proposes pacing as a therapy, while Goudsmit has emphasized the opposite. She explicitly warned that: “both the rationale behind pacing and the findings from controlled trials do not support the promotion by some patient groups of pacing as a “therapy” for CFS. […] given the lack of evidence that this strategy can alleviate a range of symptoms and promote healing, descriptions of pacing as a form of therapy may be construed as misleading.”<ref name=":0" />

The findings of the PACE-trial, analyzed according to the original protocol, did not find a significant difference between APT, specialist medical care, graded exercise therapy or cognitive behavioral therapy. Jason remarked that the label APT, included much more than pacing: “It is important to note that APT (Cox et al., 2004) also included advice on stress management, sleep, and so on, and this makes it difficult to determine what was effective or ineffective if one cannot separate the effects […] the authors evaluated APT, not solely pacing.”<ref name=":13" /> According to Goudsmit and Howes, “the differences between APT and pacing almost certainly explain the discrepancy between the results relating to the former, and the research as well as positive experiences of pacing reported by patients in surveys conducted by support groups.”<ref>{{Cite journal | last = Goudsmit | first = Ellen | last2 = Howes | first2 = Sandra | date = 2017-08-01| title = Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment|url=https://doi.org/10.1177/1359105317707216|journal=Journal of Health Psychology|language=en|volume=22|issue=9|pages=1159–1167|doi=10.1177/1359105317707216|issn=1359-1053}}</ref>
=== Activity pacing-self management ===
Another form of pacing, Activity Pacing Self-Management (APSM) is promoted by the Belgian research group of [[Jo Nijs]], one of the authors of the 2012 consensus document on pacing. His version of pacing is more in line with the tradition of operant conditioning in the chronic pain literature, and less with the principles of energy conservation. According to Nijs, the PACE authors made a mistake by placing pacing and [[Graded exercise therapy|GET]] in opposition to each other, as it is more effective to use both strategies in the treatment of ME/CFS.<ref name=":14">{{Cite journal | last = Kos | first = Daphne | last2 = van Eupen | first2 = Inge | last3 = Meirte | first3 = Jill | last4 = Van Cauwenbergh | first4 = Deborah | last5 = Moorkens | first5 = Greta | last6 = Meeus | first6 = Mira | last7 = Nijs | first7 = Jo| date = Sep 2015 | title = Activity Pacing Self-Management in Chronic Fatigue Syndrome: A Randomized Controlled Trial|url=https://www.ncbi.nlm.nih.gov/pubmed/26356665|journal=The American Journal of Occupational Therapy: Official Publication of the American Occupational Therapy Association|volume=69|issue=5 | pages = 6905290020|doi=10.5014/ajot.2015.016287|issn=1943-7676|pmc=4564796|pmid=26356665}}</ref> Nuñes (2011) also used a pacing approach to physical activity and exercise, with positive results.<ref name="Nunes2011" /> In APSM patients first learn to pace themselves to find a baseline of activity that doesn’t result in relapses. Only if they’ve managed to stabilize their condition - and this might take several weeks - can they proceed to the next phase which aims to gradually increase activities according to time-contingent scheme. In APSM pacing is thus used a stepping stone to graded exercise therapy.

Nijs' research group tested the APSM approach in a 2015 randomized control trial in which the control group received relaxation therapy.<ref name=":14" /> The results were favorable for APSM, though no objective performance measures were used. The study was also rather small as only 16 ME/CFS patients were involved in the experimental group, of which 4 (25%) stopped the treatment prematurely.

{{See also|Graded exercise therapy}}

=== Pacing for chronic pain patients: ===
In 2018, Thomson et al., a research team at the University of Manchester, studied pacing in 114 ME/CFS patients using the Chronic Pain Coping Inventory (CPCI).<ref name=":15">{{Cite journal | last = Thompson | first = D. P. | last2 = Antcliff | first2 = D. | last3 = Woby | first3 = S.R. | date = Mar 2018| title = Symptoms of chronic fatigue syndrome/myalgic encephalopathy are not determined by activity pacing when measured by the chronic pain coping inventory|url=https://www.ncbi.nlm.nih.gov/pubmed/28843450|journal=Physiotherapy|volume=104|issue=1|pages=129–135|doi=10.1016/j.physio.2017.07.005|issn=1873-1465|pmid=28843450}}</ref> In 2001, Nielson et al. had added six questions to this questionnaire to assess the use of pacing.<ref>{{Cite journal | last = Nielson | first = W.R. | last2 = Jensen | first2 = M.P. | last3 = Hill | first3 = M.L. | date=Jan 2001| title = An activity pacing scale for the chronic pain coping inventory: development in a sample of patients with fibromyalgia syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/11166466|journal=Pain|volume=89|issue=2-3|pages=111–115|issn=0304-3959|pmid=11166466}}</ref> As the CPCI was designed for patients with chronic pain, the added pacing section focuses on doing things “slow and steady” and breaking up tasks into manageable pieces, instead on listening to symptom-flare ups and balancing energy expenditure. This form of pacing thus differs significantly form the version promoted by Goudsmit and Jason.

Thomson et al. searched for cross-sectional associations between pacing and levels of pain, disability and fatigue, but made a remarkable choice in outcome measures. For fatigue they used the [[Chalder fatigue scale|Chalder Fatigue Scale]] with Likert score, despite detailed criticism of this method.<ref>{{Cite news | url=https://www.s4me.info/threads/s4me-submission-to-the-public-review-on-common-data-elements-for-me-cfs-problems-with-the-chalder-fatigue-questionnaire.2065/| title = S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire|work=Science for ME|access-date=2018-08-20|language=en-US}}</ref> Disability was assessed using the Fibromyalgia Impact Questionnaire (FIQ) physical impairment subscale, on the basis that ME/CFS- and fibromyalgia patients share many symptoms.

Using these outcome measures, Thompson et al. found no significant associations between pacing and levels of pain, fatigue or disability. In the second part of the study, a smaller sample of 35 ME/CFS patients followed a graded exercise program. Although participants reported significant reductions in fatigue, these improvements were not explained by pacing as measured with the CPCI. According to the authors “It would therefore seem that factors other than pacing were more important determinants of improvements following treatment.”<ref name=":15" />
== Criticism ==

===Focus on symptoms? ===
Some have argued that close monitoring of symptoms might aggravate distress and disability.<ref>{{Cite journal | last = Heins | first = Marianne | last2 = Knoop | first2 = Hans | last3 = Nijs | first3 = Jo | last4 = Feskens | first4 = Remco | last5 = Meeus | first5 = Mira | last6 = Moorkens | first6 = Greta | last7 = Bleijenberg | first7 = Gijs| date = Jun 2013| title = Influence of symptom expectancies on stair-climbing performance in chronic fatigue syndrome: effect of study context|url=https://www.ncbi.nlm.nih.gov/pubmed/22865100|journal=International Journal of Behavioral Medicine|volume=20|issue=2|pages=213–218|doi=10.1007/s12529-012-9253-2|issn=1532-7558|pmid=22865100}}</ref><ref>Dittner, A., & Chalder, T. (2003). Measuring symptoms and fatigue severity. In L.A. Jason., P.A. Fennell., & R.R. Taylor (Eds.), Handbook of chronic fatigue syndrome (pp. 363-383). New Jersey: John Wiley & Sons.</ref> According to Goudsmit & Howes, however “it is important to differentiate between responding to symptoms as one becomes aware of them, an inherent part of pacing, and constant monitoring, which is unnecessary and should be discouraged.”<ref name=":0" />
===Trapped in the envelope?===
Others have argued that pacing might hamper recovery as it lets symptoms of pain and fatigue determine the amount of activity patients do. According to [[Peter White]]: the theoretical risk of pacing is that the patient remains trapped by their symptoms in the envelope of ill health".<ref>{{Cite journal | last = White | first = P. D. | date = Aug 2002| title = Chronic unexplained fatigue|url=https://www.ncbi.nlm.nih.gov/pubmed/12185213|journal=Postgraduate Medical Journal|volume=78|issue=922 | pages = 445–446|issn=0032-5473|pmc=1742445|pmid=12185213}}</ref> Pacing however does not limit the activity of patients, as long as they feel they are up to it. Goudsmit wrote: “my concept of pacing means responding to your symptoms so if you feel OK, there's no reason to stop. If you want to increase your activity levels, you are free to do so as long as you don't over-exert yourself in the process.”<ref name=":1" />
=== Reliance on subjective symptoms instead of objective limits ===
Researchers from the [[Workwell Foundation]] have argued that self-managed pacing puts too much emphasis on the subjective experience of symptoms and that objective limits to avoid relapse are preferable. In 2010 [[Todd Davenport|Davenport]] et al. wrote: <blockquote>“To date, recommendations for pacing self-management in people with CFS/ME have been made on the basis of symptom acuity and irritability. Although these criteria seem to be intuitive, they may fail to account for the rapid changes in function that are characteristic of CFS/ ME. An impaired perception of effort in people with CFS/ME may interfere with the optimal maintenance of symptom-free activity levels if pacing self-management criteria that are based solely on symptomatology are used.”<ref>{{Cite journal | last = Davenport | first = Todd E. | last2 = Stevens | first2 = Staci R. | last3 = VanNess | first3 = Mark J. | last4 = Snell | first4 = Christopher R. | last5 = Little | first5 = Tamara | date = Apr 2010| title = Conceptual model for physical therapist management of chronic fatigue syndrome/myalgic encephalomyelitis|url=https://www.ncbi.nlm.nih.gov/pubmed/20185614|journal=Physical Therapy|volume=90|issue=4 | pages = 602–614|doi=10.2522/ptj.20090047|issn=1538-6724|pmid=20185614}}</ref> </blockquote>As an alternative the authors propose to [[Activity management based on 2-day cardiopulmonary exercise testing results|use a cardiopulmonary exercise test (CPET) to gather information about the patient’s physiology]]. The [[anaerobic threshold]] (AT) in particular can be seen as the boundary where exercise becomes harmful for ME/CFS patients. Davenport et al. suggest that a 10% margin below the estimated heart rate at the AT should be used as an exercise limit. Patients can set a heart rate monitor to make an alarm noise, each time the heart rate exceeds this limit. This might provide more reliable feedback to avoid relapses than the mere perception of muscle weakness originally used in pacing.
A case study by Stevens and Davenport (2010) describes the use of pacing in a patient with CFS using a heart rate set to below the patient's anaerobic threshold; this resulted in significant improvements and reduced periods of over-exertion.<ref name="HRpacing2010" />

===Too much activity? ===
Instead of advising too little activity, some have argued that pacing actually instructs patients to do too much. ME advocate [[Gabby Klein]], for example wrote: “My treating physician - Dr. [[Derek Enlander|Enlander]] - always told me to do 50% of what I think I can do. It was the best advice I got. There is much more potential harm from activity/exercise than from rest.”<ref>{{Cite news | url=https://twitter.com/GabbyKlein1/status/1026561377828306947| title = Gabby Klein on Twitter|work=Twitter|access-date=2018-08-20|language=en}}</ref> ME blogger Sally Burch argued that ME/CFS patients will usually do too much activity, so that the best advice a physician can give, is preemptive rest.<ref>{{Cite news | url=https://twitter.com/KeelaToo/status/1026727305585074176| title = Sally Burch on Twitter|work=Twitter|access-date=2018-08-20|language=en}}</ref> According to Goudsmit and Jason however, advising patients to do less than they could without exacerbating symptoms, might impede them from engaging in meaningful activities such as contact with friends and family. As such, preemptive rest might increase distress and disability.<ref name=":13" />

== Learn more and Pacing Guides ==

=== Factsheets and information ===
*[https://www.meaction.net/resource/pacing-and-management-guide/ Pacing and Management Guide] - MEAction (English, Swedish and Italian versions)
* [http://www.wames.org.uk/pacingweb.pdf Pacing for ME and CFS: a guide for patients by Dr Ellen Goudsmit. Welsh Association of ME & CFS support (WAMES), May 2005.]
* [https://www.prohealth.com/library/pacing-for-me-cfs-the-facts-23836 Pacing for ME/CFS: The Facts. Prohealth.com, January 2007.]
* [http://www.axfordsabode.org.uk/me/pacing.htm Pacing: An additional strategy to manage fatigue in chronic fatigue syndrome] - Ellen M. Goudsmit and Sandra Howes
== Worksheets==
*[https://pacinginfo.weebly.com/worksheets.html Pacing Worksheets] from [[Classic Pacing for a Better Life with ME]], Ingebjørg Midsem Dahl

=== Blogs and articles: ===
* [http://solvecfs.org/wp-content/uploads/2013/06/080505.pdf Solve ME/CFS Initiative - Managing Your Energy Envelope by Bruce Campbell (pdf)]
* [http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope Pacing by Numbers: Using Your Heart Rate To Stay Inside the Energy Envelope by Bruce Campbell.]
* Bruce Campbell, PhD, has included the Envelope Theory in chapter 7 of his manual, ''Recovery from Chronic Fatigue Syndrome: One Person's Story''<ref>http://www.recoveryfromcfs.org/chapter7.htm</ref>
* [[Just ME]] blogger, Sally Burch, has written about self-pacing and the energy envelope in a post called ''"[http://sallyjustme.blogspot.com/2014/09/play-up-and-lay-up.html Play-Up & Lay-Up" not "Boom & Bust"]''.<ref>[http://sallyjustme.blogspot.co.uk/2014/09/play-up-and-lay-up.html "Play-Up & Lay-Up not Boom & Bust]</ref>
* [http://www.healthrising.org/blog/2013/05/17/coping-works-in-chronic-fatigue-syndrome-except-when-it-doesnt-study-suggests-large-group-gets-no-help/ Health Rising - Coping vs Energy Envelope in CFS]
* [https://longcovid.physio/pacing]

== Books==
*[[Classic Pacing for a Better Life with ME]] - Ingebjørg Midsem Dahl
:Translations into Norweigan and Islandic also available

== Notable studies: ==
* Jason et al. (2008). The Energy Envelope Theory and myalgic encephalomyelitis/chronic fatigue syndrome - [https://www.researchgate.net/publication/5276419_The_Energy_Envelope_Theory_and_myalgic_encephalomyelitischronic_fatigue_syndrome (Full text)]
* Stevens et al. (2010). Functional outcomes of anaerobic rehabilitation in an individual with chronic fatigue syndrome: case report with 1-year follow-up.<ref name="HRpacing2010">{{Cite journal| title = Functional outcomes of anaerobic rehabilitation in an individual with chronic fatigue syndrome: case report with 1-year follow-up|url = http://workwellfoundation.org/wp-content/uploads/2019/07/Functional-Outcomes-of-Anaerobic-Rehabilitation-in-a-Patient-With-Chronic-Fatigue-Syndrome.-Case-Report-With-1-Year-Follow-Up.pdf|journal=Bulletin of the IACFS/ME | date = 2010 | volume =18|issue=3 | pages = 93-98 | last = Stevens | first = Todd E | authorlink = Staci Stevens | last2 = Davenport | authorlink2 = Todd Davenport}}</ref> - [http://workwellfoundation.org/wp-content/uploads/2019/07/Functional-Outcomes-of-Anaerobic-Rehabilitation-in-a-Patient-With-Chronic-Fatigue-Syndrome.-Case-Report-With-1-Year-Follow-Up.pdf (Full text)]
::Pacing using a HR monitor to avoid most over-exertion.
* Nuñez et al (2011). Health-related quality of life in patients with chronic fatigue syndrome: group [[Cognitive behavioral therapy|cognitive behavioural therapy]] and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up<ref name="Nunes2011">{{Cite journal | last = Núñez | first = Montserrat | authorlink = Montserrat Núñez | last2 = Fernández-Solà | first2 = Joaquim | authorlink2 = Joaquim Fernández-Solà | last3 = Nuñez | first3 = Esther | author-link3 = Esther Nuñez | last4 = Fernández-Huerta | first4 = José-Manuel | author-link4 = José-Manuel Fernández-Huerta | last5 = Godás-Sieso | first5 = Teresa | author-link5 = Teresa Godás-Sieso | last6 = Gomez-Gil | first6 = Esther | authorlink6 = Esther Gomez-Gil| date = Mar 2011| title = Health-related quality of life in patients with chronic fatigue syndrome: group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up | url =http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.467.4965&rep=rep1&type=pdf|journal=Clinical Rheumatology|volume=30|issue=3|pages=381–389|doi=10.1007/s10067-010-1677-y|issn=1434-9949|pmid=21234629|quote=|via=}}</ref> - [http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.467.4965&rep=rep1&type=pdf (Full Text)]
* Goudsmit et al. (2012). Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document<ref name=":8" /> - [https://www.researchgate.net/publication/51900061_Pacing_as_a_strategy_to_improve_energy_management_in_myalgic_encephalomyelitischronic_fatigue_syndrome_A_consensus_document (Full text)]
::''Describing graded exercise in comparison with symptom-contingent graded exercise therapy or pacing''
* O'Connor et al. (2017). Energy envelope maintenance among patients with myalgic encephalomyelitis and chronic fatigue syndrome: Implications of limited energy reserves - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5750135/ (Full text)].

==See also==
*[[Activity management based on 2-day cardiopulmonary exercise testing results]]
*[[Bed rest]]
*[[Spoon theory]]
*[[Graded exercise therapy]]
*[[Mindfulness]]
*[[Meditation]]
*[[Pacing with a heart rate monitor]]
*[[Post-exertional malaise]]

== References ==
{{Reflist}}

[[Category:Potential treatments]]
[[Category:Management strategies]]

Corticosteroids given during acute viral infection may trigger myalgic encephalomyelitis

2025-05-07T18:49:36Z

Yakov:Add March 2025 Chinese study finding corticosteroids increase long covid

{{Cleanup|reason=The page title is a complete sentence, not a topic. consider moving page content to a page on "corticosteroids", instead of having a separate page. (if kept as a separate page, it would need a category.) | date = 22 December 2019}}

==Acute viral infection plus corticosteroids may cause ME/CFS ==
[[John Chia|Dr John Chia]] has observed that corticosteroids inadvertently prescribed during an acute viral infection substantially increase the risk of developing myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) from that infection. Via his meticulous investigations into patients' medical histories, Dr Chia discovered that hundreds of his ME/CFS patients were given corticosteroids precisely during the time that they came down with a flu-like illness, gastrointestinal upset or other viral infection.<ref>{{Cite web | url = http://www.investinme.org/IIMEC5.shtml | title = Dr John Chia: Enterovirus Infection in ME/CFS. Presentation at the Invest in ME International ME Conference, London 2010 (available on DVD). Timecodes: 07:31 and 28:00. | last = | first = | authorlink = | date = | website = | archive-url = | archive-date = |url-status = | access-date=|quote=VIDEO TIMECODE 07:31 — If the patient already had chickenpox before and they then develop flu-like illness with chickenpox-like rashes that's enterovirus until proven otherwise. But the rash could look like measles, German measles, it could look like hives. So very often people travel, eat some shellfish, and develop this hives, all over. Went to the emergency room, the emergency room doctor will say, 'Oh well, you ate lobster, you must be allergic to shellfish.' So what's the next thing they get? They get some prednisone, steroids, and that disease never ended. They develop chronic fatigue syndrome after that. We hear this hundreds of times. VIDEO TIMECODE 28:00 — Glucocorticoids: if the patient developed a viral infection, and with symptoms suggestive of asthma, they are often given steroids, because it's the mainstay of therapy. That can shift the immune response to Th2, not to mention you'll drop the T-lymphocytes down to practically zero.}}</ref> Thus there appears to be a causal equation of:

'''Acute infection + corticosteroids = ME/CFS'''

Dr Chia says one reason corticosteroids can be inadvertently prescribed during an acute enteroviral infection is because an [[enterovirus]] rash can look like [[Urticaria|hives]], so if a doctor questions what the patient ate, and they happened to eat shellfish recently, the doctor may incorrectly assume the rash is a hives rash, resulting from allergy to shellfish. So the doctor may then put the patient on a course of corticosteroids such as prednisone, as this is the normal treatment for hives.

Thus the patient has an acute enterovirus infection, and needs a strong immune response to fight this infection, yet receives immunosuppressing corticosteroids, because the viral rash was misdiagnosed as hives.

Similarly, if a patient comes down with an acute viral infection and its symptoms are suggestive of asthma, they may also be inappropriately prescribed corticosteroids, because that is how [[asthma]] is treated.

A study from China on health outcomes after a covid infection<ref>{{Cite journal | last1 = Hui | first1 = Zhang | last2 = Peng | first2 = Yang | last3 = Xiaoying | first3 = Gu | last4 = Ying | first4 = Sun | last5 = Rongling | first5 = Zhang | last6 = Daitao | first6 = Zhang | last7 = Jiaojiao | first7 = Zhang | last8 = Yeming | first8 = Wang | last9 = Chunna | first9 = Ma | last10 = Min | first10 = Liu | last11 = Jiaxin | first11 = Ma | last12 = Aili | first12 = Li | last13 = Yingying | first13 = Wang | last14 = Xiao | first14 = Ma | last15 = Xiaojing | first15 = Cui | last16 = Yimin | first16 = Wang | last17 = Zhibo | first17 = Liu | last18 = Wei | first18 = Wang | last19 = Zhi | first19 = Zheng | last20 = Yong | first20 = Li | last21 = Jin | first21 = Wu | last22 = Quanyi | first22 = Wang | last23 = Bin | first23 = Cao | title = Health outcomes one year after Omicron infection among 12,789 adults: a community-based cross-sectional study | url = https://www.thelancet.com/journals/lanwpc/article/PIIS2666-6065(25)00044-6/fulltext | doi = 10.1016/j.lanwpc.2025.101507 | issn = 2666-6065 | date = March 2025 | volume = 56 | journal = The Lancet Regional Health – Western Pacific}}</ref> finds that use of corticosteroids during acute phase is associated with a 153% higher risk of getting [[Long covid]].

== Immunosuppression by corticosteroids and chronic stress ==
Corticosteroids suppress the Th1 antiviral/intracellular immune response, up-regulate the antibacterial Th2 response,<ref>{{Cite journal | last = Elenkov|first = Ilia J. | date = Jun 2004 | title = Glucocorticoids and the Th1/Th2 balance | url =https://www.ncbi.nlm.nih.gov/pubmed/15265778|journal=Annals of the New York Academy of Sciences|volume=1024 | pages = 138–146|doi=10.1196/annals.1321.010|issn=0077-8923|pmid=15265778}}</ref> and suppresses T-cell function.<ref>{{Cite journal | last = Davis | first = Trevor E | last2 = Kis-Toth | first2 = Katalin | last3 = Szanto | first3 = Attila | last4 = Tsokos | first4 = George C. | date = Jul 2013 | title = Glucocorticoids suppress T cell function by upregulating microRNA 98 | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3713788/|journal=Arthritis and rheumatism|volume=65 | issue = 7 | pages = 1882–1890|doi=10.1002/art.37966|issn=0004-3591|pmc=3713788|pmid=23575983}}</ref> In the [[International Consensus Criteria|international consensus criteria]] for ME/CFS, under the list of environmental events leading to ME/CFS, it is recognised that "steroids before or during acute respiratory illness can turn immune response to Th2 and suppress T cell numbers".<ref name="ICP2011primer">{{citation | last1 = Carruthers | first1 = BM | authorlink1 = Bruce Carruthers | last2 = van de Sande | first2 = MI | authorlink2 = Marjorie van de Sande | last3 = De Meirleir | first3 = KL | authorlink3 = Kenny de Meirleir | last4 = Klimas | first4 = NG | authorlink4 = Nancy Klimas | last5 = Broderick | first5 = G | authorlink5 = Gordon Broderick | last6 = Mitchell | first6 = T | authorlink6 = Terry Mitchell | last7 = Staines | first7 = D | authorlink7 = Donald Staines | last8 = Powles | first8 = ACP | authorlink8 = A C Peter Powles | last9 = Speight | first9 = N | authorlink9 = Nigel Speight | last10 = Vallings | first10 = R | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = L | authorlink11 = Lucinda Bateman | last12 = Bell | first12 = DS | authorlink12 = David Bell | last13 = Carlo-Stella | first13 = N | authorlink13 = Nicoletta Carlo-Stella | last14 = Chia | first14 = J | authorlink14 = John Chia | last15 = Darragh | first15 = A | authorlink15 = Austin Darragh | last16 = Gerken | first16 = A | authorlink16 = Anne Gerken | last17 = Jo | first17 = D | authorlink17 = Daehyun Jo | last18 = Lewis | first18 = DP | authorlink18 = Donald Lewis | last19 = Light | first19 = AR | authorlink19 = Alan Light | last20 = Light | first20 = KC | authorlink20 = Kathleen Light | last21 = Marshall-Gradisnik | first21 = S | authorlink21 = Sonya Marshall-Gradisnik | last22 = McLaren-Howard | first22 = J | authorlink22 = John McLaren-Howard | last23 = Mena | first23 = I | authorlink23 = Ismael Mena | last24 = Miwa | first24 = K | authorlink24 = Kunihisa Miwa | last25 = Murovska | first25 = M | authorlink25= Modra Murovska | last26 = Stevens | first26 = SR | authorlink26 = Staci Stevens | title = Myalgic encephalomyelitis: Adult & Paediatric: International Consensus Primer for Medical Practitioners | date = 2012
| isbn = 978-0-9739335-3-6 | url = http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf }}</ref>

Interestingly, ME/CFS is usually precipitated by viral infection, and several studies found it is common to experience major psychological chronic stress in the year prior to developing ME/CFS.<ref>{{Cite journal | last = Hatcher | first = Simon | last2 = House | first2 = Allan | date = Oct 2003 | title = Life events, difficulties and dilemmas in the onset of chronic fatigue syndrome: a case-control study | url = https://www.ncbi.nlm.nih.gov/pubmed/14580073|journal=Psychological Medicine|volume=33 | issue = 7 | pages = 1185–1192|doi=10.1017/s0033291703008274|issn=0033-2917|pmid=14580073}}</ref><ref>{{Cite journal | last = Theorell|first = T. | last2 = Blomkvist | first2 = V. | last3 = Lindh | first3 = G. | last4 = Evengård | first4 = B. | date = May 1999 | title = Critical life events, infections, and symptoms during the year preceding chronic fatigue syndrome (CFS): an examination of CFS patients and subjects with a nonspecific life crisis |url =https://www.ncbi.nlm.nih.gov/pubmed/10367610|journal=Psychosomatic Medicine|volume=61 | issue = 3 | pages = 304–310|issn=0033-3174|pmid=10367610}}</ref><ref>{{Cite journal | last = Salit | first = Irving E. | date = 1997-01-01 | title = Precipitating factors for the chronic fatigue syndrome | url =http://www.sciencedirect.com/science/article/pii/S0022395696000507|journal=Journal of Psychiatric Research|volume=31 | issue = 1 | pages = 59–65|doi=10.1016/S0022-3956(96)00050-7|issn=0022-3956}}</ref> Chronic psychological stress elevates cortisol which suppresses the Th1 antiviral/intracellular immune response,<ref>{{Cite journal | last = Dhabhar | first = Firdaus S | date = 2008-03-15 | title = Enhancing versus Suppressive Effects of Stress on Immune Function: Implications for Immunoprotection versus Immunopathology | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2869337/|journal=Allergy, Asthma, and Clinical Immunology : Official Journal of the Canadian Society of Allergy and Clinical Immunology|volume=4 | issue = 1 | pages = 2–11|doi=10.1186/1710-1492-4-1-2|issn=1710-1484|pmc=2869337|pmid=20525121}}</ref> and the T-cell response.<ref>{{Cite journal | last = Dhabhar | first = Firdaus S | date = 2008-03-15 | title = Enhancing versus Suppressive Effects of Stress on Immune Function: Implications for Immunoprotection versus Immunopathology | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2869337/|journal=Allergy, Asthma, and Clinical Immunology : Official Journal of the Canadian Society of Allergy and Clinical Immunology|volume=4 | issue = 1 | pages = 2–11|doi=10.1186/1710-1492-4-1-2|issn=1710-1484|pmc=2869337|pmid=20525121}}</ref> Thus immonologically, chronic stress has a similar effect to corticosteroid administration, and both these factors appear to increase the risk of development of ME/CFS from viral infection.

== See also ==
* [[Enterovirus]]
* [[Non-cytolytic enterovirus]]
* [[Stress]]
* [[John Chia]]

== References ==
{{Reflist}}