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Testing a Personalised Dysautonomia Management Protocol in Patients with Orthostatic Intolerance and a Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or Long COVID
Julia Barr1,2,3,Lowri Marsden1,
Theshan Dassanayake1,
Norah Almutairi1,4,
Vikki McKeever5,
Tarek Gaber6,
Rachel Tarrant2,
Belinda Godfrey2,
Sharon Witton2 and
Manoj Sivan1,2,3,*
1
Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds LS7 4SA, UK
2
Leeds Community Healthcare, Leeds LS11 0DL, UK
3
Department of Rehabilitation Medicine, Leeds Teaching Hospitals NHS Trust, Leeds LS7 4SA, UK
4
Physical Therapy and Rehabilitation Department, College of Applied Medical Sciences, Majmaah University, Al Majma’ah 11952, Saudi Arabia
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J. Clin. Med.2026, 15(7), 2510;https://doi.org/10.3390/jcm15072510 (registering DOI)
This article belongs to the Special Issue POTS, ME/CFS and Long COVID: Recent Advances and Future Direction
Abstract
Background/Objectives:Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID (LC) are complex multisystem conditions with significant functional disability. Many patients experience symptoms of orthostatic intolerance, which can be captured in some cases as Orthostatic Hypotension (OH) or Postural orthostatic Tachycardia Syndrome (PoTS) on objective testing. Conservative treatments are recommended for first-line symptom management, but there is a lack of efficacy evidence. This study aims to assess the feasibility of an 8-week clinically supervised, personalised Dysautonomia Management Protocol (DMP) in a cohort of ME/CFS and LC patients with subjective and objective evidence of orthostatic intolerance (dysautonomia).
Methods:
ME/CFS and LC patients with objective dysautonomia on the 10 min active Lean Test (LT) were recruited to an 8-week DMP, with interventions introduced cumulatively every two weeks. Interventions included increasing daily fluid intake to 3 litres and salt intake to 10 g, pacing to avoid crashes and calf activation. Baseline and weekly data collection included the LT, Composite Autonomic Symptom Score questionnaire (COMPASS-31) and Yorkshire Rehabilitation Scale (YRS).
Results:
Sixteen participants completed the 8-week program, five discontinued during the program, and one was withdrawn following a severe crash. The COMPASS-31 improved by 7.7 points from week 1 to week 8 (p = 0.045), with a medium Cohen’s d effect size of 0.55. For the same period, there was a non-significant (p = 0.16) improvement in the YRS symptom severity score by 2 points. Comparing the final two weeks of the program with the first two weeks, mean heart rate during the LT decreased by 4.8 beats per minute (p = 0.032), with a medium Cohen’s d effect size of 0.44. Adherence to the interventions was highly variable, with none of the patients able to fully employ all four recommendations.
Conclusions:
The results suggest that targeted conservative interventions could influence autonomic function and symptom reduction. However, the magnitude of change was limited, and statistical significance might not necessarily relate to a clinically significant improvement in symptoms.
