Editorial: Humility & Acceptance: Working Within Our Limits With Long Covid & ME/CFS

May 17, 2021


This is a very welcome editorial, see below, which recognises the experiences of people with ME/CFS and how this can be applied to people with Long Covid.

MEA Booklet on Long Covid & ME/CFS

People with ME/CFS have built a wealth of knowledge and experience over many years on how best to deal with activity and energy limitations, and this can now be used to help people with Long covid.

While some people with Long Covid are being given helpful information and guidance on activity and energy management, many are receiving little or no guidance at all.

Some are being given guidance that is based on graded exercise therapy and incremental increases in activity rather than pacing and are being made worse as a result.

The editorial was driven by people living with Long Covid and with ME/CFS. Co-authors Sabrina Poirier, Christiane Garcia, and Scott Simpson are people living with ME/CFS. Darren Brown is both a clinician and a person living with Long Covid, and Michelle Bull is working with Physios4ME.

“Physical therapists and exercise clinicians worldwide are promoting their rehabilitation skills to people living with Long COVID. However, our enthusiasm may have been short-sighted and a disservice to patients' safety…”

Patients participated in drafting the narrative of the editorial, wrote sections, and reviewed and edited it. They wrote the final sentence and selected the title.

More information:

Editorial:

Humility and Acceptance: Working Within Our Limits With Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Authors: Simon Décary, PT, PhD, Isabelle Gaboury, PhD, Sabrina Poirier, Christiane Garcia Scott Simpson, BA, CWC, Michelle Bull, PhD Darren Brown, MSc, MRes Frédérique Daigle, MSc.

Journal of Orthopaedic & Sports Physical Therapy. Published Online: April 30, 2021 Volume 51 Issue 5 Pages197-200

Download the poster which was featured in the editorial

Abstract

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 impact their quality of life.

Patients with long COVID asked for rehabilitation. Many of them, including previously healthy and fit clinicians, tried to fight post-viral fatigue with exercise-based rehabilitation. We observed a growing number of patients with long COVID who experienced adverse effects from exercise therapy and symptoms strikingly 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 rehabilitation and share resources to improve care for those with post-viral illnesses.

Recommendations

  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 propose that clinicians use the validated 10-item DePaul Symptoms Questionnaire. This questionnaire helps clinicians describe the frequency and intensity of PEM. For clinicians involved in developing service pathways for long COVID, an extended form is also available and should be combined with additional assessment procedures, such as orthostatic intolerance testing.
  2. To all people living with long COVID and ME/CFS, promote the message “Stop. Rest. Pace.” This approach, proposed by the ME/CFS community, emphasizes that clinicians' 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 living with long COVID who experience relapses with exercise.

Dr Charles Shepherd, Hon. Medical Adviser, ME Association

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