[ editorial ]

SIMON DÉCARY, PT, PhD1 • ISABELLE GABOURY, PhD2 • SABRINA POIRIER3 • CHRISTIANE GARCIA4

SCOTT SIMPSON, BA, CWC5 • MICHELLE BULL, PhD6 • DARREN BROWN, MSc, MRes7 • FRÉDÉRIQUE DAIGLE, MSc1

Humility and Acceptance: Working

Within Our Limits With Long COVID
and Myalgic Encephalomyelitis/
Chronic Fatigue Syndrome
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L
ong COVID is the term coined by patients to describe the long- experience complex and debilitating
term consequences of COVID-19, the 2019 pandemic disease symptoms 6 months after the infection,
caused by the new severe acute respiratory syndrome corona- impacting return to work, return to
Copyright © 2021 Journal of Orthopaedic & Sports Physical Therapy®. All rights reserved.

school, and quality of life.3,6,9 Given con-

virus-2 (SARS-CoV-2).1 We define long COVID as the presence servative estimates that 10% of all cases
of signs and symptoms that develop during or following an infection will exhibit symptoms for a period of 12
consistent with COVID-19 and continue for 4 weeks or longer.10 The weeks or longer,5,13 one can infer that
term includes “postacute COVID-19” (4- Even mild cases of COVID-19 in the millions of people worldwide are suf-
12 weeks) and “post-COVID syndrome” community may lead to long COVID.3 fering, and will continue to suffer, from
(12 weeks or longer).10 Early reports of As many countries confront surging long-term disabilities from long COVID.
long-term sequelae focused on hospital- COVID-19 case numbers, new evidence Many people living with the disease
ized patients, which drove rehabilitation describes the prevalence of persistent were previously fit and healthy individu-
Journal of Orthopaedic & Sports Physical Therapy®

teams to apply exercise-based protocols
for patients who were deconditioned
during intensive-care hospital stays.11
U SYNOPSIS: The term long COVID was
coined by patients to describe the long-term
consequences of COVID-19. One year into the
pandemic, it was clear that all patients—those
hospitalized with COVID-19 and those who lived
with the disease in the community—were at risk
of developing debilitating sequelae that would im-
pact their quality of life. Patients with long COVID
asked for rehabilitation. Many of them, including
previously healthy and fit clinicians, tried to fight
postviral fatigue with exercise-based rehabilita-
tion. We observed a growing number of patients
with long COVID who experienced adverse effects
from exercise therapy and symptoms strikingly
symptoms of COVID-19 infection after
6 months.3,6 At least half of patients liv-
ing with long COVID will continue to
similar to those of myalgic encephalomyelitis
(ME). Community-based physical therapists,
including those in private practice, unaware of
safety issues, are preparing to help an influx of
patients with long COVID. In this editorial, we
expose growing concerns about long COVID and
ME. We issue safety recommendations for reha-
bilitation and share resources to improve care for
those with postviral illnesses. J Orthop Sports
Phys Ther 2021;51(5):197-200. doi:10.2519/
jospt.2021.0106
U KEY WORDS: COVID-19, ME/CFS, rehabilitation,
safety
als, including clinicians, who required
strong physical conditioning for their
work. Their inevitable response was to try
to accelerate recovery through exercise to
fight fatigue, prevent long-term disabili-
ties, and return to their previous level of
activity.8 Physical therapists and exercise
clinicians worldwide are promoting their
rehabilitation skills to people living with
long COVID. However, our enthusiasm
may have been shortsighted and a dis-
service to patients’ safety.
The Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome Community to the Rescue
One community that understands the im-
pact of living with prolonged debilitating

1
School of Rehabilitation, Faculty of Medicine and Health Sciences, Université de Sherbrooke, Sherbrooke, Canada. 2Department of Family and Emergency Medicine, Faculty
of Medicine and Health Sciences, Université de Sherbrooke, Sherbrooke, Canada. 3Patient research partner and individual living with myalgic encephalomyelitis. 4Association
Québécoise de l’Encéphalomyélite Myalgique, Montreal, Canada; postviral patient living with myalgic encephalomyelitis/chronic fatigue syndrome. 5Millions Missing Canada,
Ontario, Canada; patient living with myalgic encephalomyelitis. 6Physios for ME, Widnes, United Kingdom; family member of a person living with myalgic encephalomyelitis/
chronic fatigue syndrome. 7Therapy Department, Chelsea and Westminster Hospital National Health Service Foundation Trust, London, United Kingdom; person living with long
COVID. The authors certify that they have no affiliations with or financial involvement in any organization or entity with a direct financial interest in the subject matter or materials
discussed in the article. Address correspondence to Dr Simon Décary, Patient-Oriented Rehabilitation Lab, School of Rehabilitation, Faculty of Medicine and Health Sciences,
Université de Sherbrooke, 3001 Douzième Avenue Nord, Sherbrooke, QC J1H 5N4 Canada. E-mail: simon.decary@usherbrooke.ca t Copyright ©2021 JOSPT®, Inc

journal of orthopaedic & sports physical therapy | volume 51 | number 5 | may 2021 | 197


symptoms and multisystem dysfunction
from postviral illness is the myalgic en-
cephalomyelitis/chronic fatigue syn-
drome (ME/CFS) community. Myalgic
encephalomyelitis/chronic fatigue syn-
drome is a severe multisystemic disease
characterized by the hallmark symptom
of postexertional malaise (PEM), a dis-
abling and often delayed exhaustion dis-
proportionate to the effort exerted.2,3,14
Millions of patients live with ME/CFS,
and in 80% of them the illness followed
an infection. The scale of the COVID-19
pandemic concerns the ME/CFS com-
Downloaded from www.jospt.org at on June 12, 2021. For personal use only. No other uses without permission.
munity, because the postviral illness will
affect many.7 In response to the increas-
ing emphasis on exercise-based rehabili-
tation for long COVID, those in the ME/
CFS community have raised their voices
Copyright © 2021 Journal of Orthopaedic & Sports Physical Therapy®. All rights reserved.
to warn clinicians of the dangers of rec-
ommending such protocols.
The history of ME/CFS with exercise
is one of false hope.14 More than 3 decades
of trying exercise in this population can
be summed up in one sentence: exercise
can be harmful, sometimes life threat-
ening, and should be avoided. Postexer-
tional malaise manifests as an abnormal
Journal of Orthopaedic & Sports Physical Therapy®
physiological response to physical or
cognitive exertion.2 It can be triggered
after a daily activity, such as a shower,
and result in a severe combination of
flu-like and neurological symptoms and
crushing fatigue.2 In most patients, the
onset of PEM is often delayed by 24 to
72 hours, followed by unpredictable se-
verity of immune, neurological, cognitive,
and gastrointestinal symptoms that may
persist for days, weeks, or permanently.
Anecdotes of PEM are emerging from
people living with long COVID.
The organization Patient-Led Research
for COVID-19 describes PEM as a persis-
tent symptom of COVID-19.3 In an on-
line survey of 3762 people living with long
COVID, 89.1% of respondents experi-
enced “worsening or relapse of symptoms
after physical or mental activity during
COVID-19 recovery.”3 Postexertional mal-
aise was most often triggered by physi-
cal activities and exercise.3 Close to 75%
of people living with long COVID still
198  |  may 2021  |  volume 51  |  number 5  |  journal of orthopaedic & sports physical therapy
[ editorial
experienced PEM after 6 months.3 Even
accounting for sampling biases from this
online survey, this description of symp-
toms after the 6-month mark makes the
overlap between diagnoses of long COV-
ID and ME/CFS a serious possibility. The
potential global scale of people affected is
staggering.
First, Do No Harm
The beloved “exercise is medicine” maxim
is rooted in ancient Greek medicine,12 as
is the oath of “do no harm.” Clinicians
may be promoting a dangerous message
that could lead people with long COVID
down a path of endless cycles of over-
exertion and relapse. We propose 2 key,
immediate patient-safety actions for all
clinicians, including physical therapists
in private practices, who are involved in
delivering care for people with long CO-
VID and ME/CFS.
1. Screen and continuously monitor for
the presence or development of PEM
during follow-up of people living with
long COVID and ME/CFS. We pro-
pose that clinicians use the validated
10-item DePaul Symptoms Question-
naire (Appendix A in Cotler et al2).
FIGURE. The “Stop. Rest. Pace” approach to safely manage physical and cognitive activities while recovering from
long COVID.
]
This questionnaire helps clinicians de-
scribe the frequency and intensity of
PEM. For clinicians involved in devel-
oping service pathways for long COV-
ID, an extended form is also available
and should be combined with addi-
tional assessment procedures, such as
orthostatic intolerance testing.
2. To all people living with long CO-
VID and ME/CFS (FIGURE), promote
the message “Stop. Rest. Pace.” This
approach, proposed by the ME/CFS
community, emphasizes that clini-
cians’ main advice to patients should
be to avoid continuous overexertion
cycles of PEM and focus on rest and
energy pacing. Pacing is an approach
to activity management used within
ME/CFS to prevent triggering PEM
and may be acceptable for people liv-
ing with long COVID who experience
relapses with exercise.3,14
Few clinicians currently have the ex-
pertise to manage postviral illnesses, and
patients may have difficulty accessing
these services. We include links to on-
line resources to support clinicians and
people living with long COVID and ME/
CFS (TABLE).
STOP trying to push your limits.
Overexertion may be detrimental
to your recovery.
REST is your most important
management strategy. Do not wait
until you feel symptoms to rest.
PACE your daily physical and cognitive
activities. This is a safe approach to
navigate triggers of symptoms.
 A Call to Action
Long COVID is multidimensional and
unpredictable—a reality underappreciat-
ed in ME/CFS. We have highlighted only 1
symptom: PEM. The virus may trigger an
autoimmune and inflammatory response
that can damage organs such as the heart
and lungs.4 People living with long COVID
are looking for strategies to help them get
back to their previous lives and to man-
age symptoms. It is difficult to predict who
will succeed in returning safely to physical
activity, school, or employment.
In 2021 and beyond, we implore the
Downloaded from www.jospt.org at on June 12, 2021. For personal use only. No other uses without permission.
pandemic. Rehabilitation of long COVID
and ME/CFS needs to be safe, effective,
and integrated into care. We call for an
international coalition to develop safety
procedures and standards of care.
We, as clinicians, must humbly ac-
cept the limits of our profession. We
cannot succeed in every case, because
poor prognosis remains prevalent in
postviral illness. We need to use our
skills to advocate for the most impor-
tant patient needs in long COVID and
ME/CFS, to give patients time to re-
cover safely, and to develop strategies
STUDY DETAILS
AUTHOR CONTRIBUTIONS: All authors meet
the International Committee of Medical
Journal Editors criteria for authorship.
All authors significantly contributed to
the initial drafting of the editorial, wrote
and edited sections of the manuscript,
and revised the final version.
DATA SHARING: There are no data in this
editorial.
PATIENT AND PUBLIC INVOLVEMENT: This
editorial was driven by people living
with long COVID and myalgic encepha-
lomyelitis. Coauthors Sabrina Poirier,

international clinician community to
emphasize safety. Science has seen great
successes (eg, vaccines) and great fail-
ures (eg, hydroxychloroquine) during the
Copyright © 2021 Journal of Orthopaedic & Sports Physical Therapy®. All rights reserved.
to adapt to a different normal, one that Christiane Garcia, and Scott Simpson
includes chronic illness and permanent are people living with myalgic encepha-
disability in some patients, despite our lomyelitis, and Darren Brown is both a
best efforts. t clinician and a person living with long

TABLE Online Resources to Support People Living With Long COVID and ME/CFS

Organization/Topic Resource
Royal College of Occupational Therapists
“Recovering from COVID-19: post-viral fatigue and conserving energy” https://www.rcot.co.uk/recovering-covid-19-post-viral-fatigue-and-conserving-energy
“How to manage post-viral fatigue after COVID-19: practical advice https://www.rcot.co.uk/how-manage-post-viral-fatigue-after-covid-19
for people who have been treated in hospital”
Journal of Orthopaedic & Sports Physical Therapy®

“How to manage post-viral fatigue after COVID-19: practical advice https://www.rcot.co.uk/how-manage-post-viral-fatigue-after-covid-19-0

for people who have recovered at home”
“How to conserve your energy” https://www.rcot.co.uk/conserving-energy
Dialogues for ME/CFS
“Activity and energy management – pacing” https://www.dialogues-mecfs.co.uk/films/pacing/
Physios for M.E.
“Pacing” https://www.physiosforme.com/pacing
“Heart rate monitoring” https://www.physiosforme.com/heart-rate-monitoring
“Heart rate monitoring” podcast https://www.physiosforme.com/post/new-podcast-heart-rate-monitoring
#MEAction
“Pacing and management guide for ME/CFS” https://www.meaction.net/wp-content/uploads/2020/10/Pacing-and-Management-Guide-for-ME_CFS-8.pdf
Action for M.E.
“Pacing for people with M.E.: a detailed guide to managing energy, https://www.actionforme.org.uk/uploads/pdfs/Pacing-for-people-with-me-booklet-Feb-2020.pdf
rest and activity for adults with mild/moderate M.E.”
Emerge Australia
“Pacing” https://www.emerge.org.au/Handlers/Download.ashx?IDMF=2a2287ee-b84d-428f-b72e-00da812ddd7c
The ME Association
“MEA summary review: assessing PEM (post-exertional malaise)” https://meassociation.org.uk/wp-content/uploads/MEA-Research-Review-Assessing-PEM-in-MECFS-25.03.19.pdf
(page 6)
Long Covid Physio
“Resources” https://longcovid.physio/resources
Physiopedia
“Long COVID” https://www.physio-pedia.com/Long_COVID
“Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” https://physio-pedia.com/Myalgic_Encephalomyelitis/Chronic_Fatigue_Syndrome
Abbreviations: CFS, chronic fatigue syndrome; ME, myalgic encephalomyelitis; PEM, postexertional malaise.

journal of orthopaedic & sports physical therapy | volume 51 | number 5 | may 2021 | 199


COVID. Patients participated in draft-
ing the narrative of the editorial, wrote
sections, and reviewed and edited the
editorial. They wrote the final sentence
of the editorial and the selected title.
REFERENCES
1. Callard F, Perego E. How and why patients made
Long Covid. Soc Sci Med. 2021;268:113426.
https://doi.org/10.1016/j.socscimed.2020.113426
2. Cotler J, Holtzman C, Dudun C, Jason LA. A brief
questionnaire to assess post-exertional malaise.
Diagnostics (Basel). 2018;8:66. https://doi.org/
10.3390/diagnostics8030066
Downloaded from www.jospt.org at on June 12, 2021. For personal use only. No other uses without permission.
[ editorial ]
10.1038/s41584-020-0448-7
5. Greenhalgh T, Knight M, A’Court C, Buxton M,
Husain L. Management of post-acute covid-19 in
primary care. BMJ. 2020;370:m3026. https://
doi.org/10.1136/bmj.m3026
6. Huang C, Huang L, Wang Y, et al. 6-month conse-
quences of COVID-19 in patients discharged from
hospital: a cohort study. Lancet. 2021;397:220-232.
https://doi.org/10.1016/S0140-6736(20)32656-8
7. Komaroff AL, Bateman L. Will COVID-19 lead to
myalgic encephalomyelitis/chronic fatigue syn-
drome? Front Med (Lausanne). 2020;7:606824.
https://doi.org/10.3389/fmed.2020.606824
8. Ladds E, Rushforth A, Wieringa S, et al. Persistent
symptoms after Covid-19: qualitative study of 114
“long Covid” patients and draft quality criteria for
services [preprint]. medRxiv. 2020. https://doi.
COVID-19 Rapid Guideline: Managing the Long-
Term Effects of COVID-19. London, UK: National
Institute for Health and Care Excellence; 2020.
11. Negrini F, de Sire A, Andrenelli E, et al.
Rehabilitation and COVID-19: a rapid living sys-
tematic review 2020 by Cochrane Rehabilitation
Field. Update as of October 31st, 2020. Eur J
Phys Rehabil Med. 2021;57:166-170. https://doi.
org/10.23736/S1973-9087.20.06723-4
12. Nicholls D, Jachyra P, Gibson BE, Fusco C,
Setchell J. Keep fit: marginal ideas in contempo-
rary therapeutic exercise. Qual Res Sport Exerc
Health. 2018;10:400-411. https://doi.org/10.1080/
2159676X.2017.1415220
13. Office for National Statistics. The prevalence of
long COVID symptoms and COVID-19 complica-
tions. Available at: https://www.ons.gov.uk/news/

3. Davis HE, Assaf GS, McCorkell L, et al.
Characterizing long COVID in an international
cohort: 7 months of symptoms and their
impact [preprint]. medRxiv. 2020. https://doi.
org/10.1101/2020.12.24.20248802
4. Galeotti C, Bayry J. Autoimmune and inflam-
Copyright © 2021 Journal of Orthopaedic & Sports Physical Therapy®. All rights reserved.
org/10.1101/2020.10.13.20211854
9. Munblit D, Bobkova P, Spiridonova E, et al. Risk
factors for long-term consequences of COVID-
19 in hospitalised adults in Moscow using the
ISARIC Global follow-up protocol: StopCOVID
cohort study [preprint]. medRxiv. 2021. https://
statementsandletters/theprevalenceof­longcovid
symptomsandcovid19complications. Accessed
December 20, 2020.
14. Wormgoor MEA, Rodenburg SC. The evidence
base for physiotherapy in myalgic encephalomy-
elitis/chronic fatigue syndrome when considering
post-exertional malaise: a systematic review

matory diseases following COVID-19. Nat Rev doi.org/10.1101/2021.02.17.21251895 and narrative synthesis. J Transl Med. 2021;19:1.
Rheumatol. 2020;16:413-414. https://doi.org/ 10. National Institute for Health and Care Excellence. https://doi.org/10.1186/s12967-020-02683-4
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200  |  may 2021  |  volume 51  |  number 5  |  journal of orthopaedic & sports physical therapy