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Nutrients
Volume 15
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10.3390/nu15040843
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Article

Patient-Reported Experiences with a Low-Carbohydrate Ketogenic Diet: An International Survey in Patients with McArdle Disease

by
Nicoline Løkken
1,2,*,
Nicol C. Voermans
3,
Linda K. Andersen
1,
Walaa Karazi
3,
Stacey L. Reason
4,
Heidi Zweers
5,
Gustav Wilms
1,
Alfredo Santalla
6,
Edward Susanibar
1,
Alejandro Lucia
7,8 and
John Vissing
1,2
1
Copenhagen Neuromuscular Center, Department of Neurology, Copenhagen University Hospital, Rigshospitalet, DK-2100 Copenhagen, Denmark
2
Department of Clinical Medicine, University of Copenhagen, DK-2200 Copenhagen, Denmark
3
The Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Nijmegen Medical Centre, 6525 GA Nijmegen, The Netherlands
4
International Association for Muscle Glycogen Storage Disease, Torrance, CA 90505, USA
5
Department of Gastroenterology and Hepatology-Dietetics, Radboudumc, 6500 HB Nijmegen, The Netherlands
6
Department of Sport and Computer Science, Section of Physical Education and Sports, Faculty of Sport, Universidad Pablo de Olavide, 41013 Seville, Spain
7
Faculty of Sport Sciences, Universidad Europea de Madrid, 28670 Madrid, Spain
8
Physical Activity Health Research Group (PaHerg), Research Institute of Hospital 12 de Octubre (‘i+12’), 28040 Madrid, Spain
*
Author to whom correspondence should be addressed.
Nutrients 2023, 15(4), 843; https://doi.org/10.3390/nu15040843
Submission received: 16 January 2023 / Revised: 2 February 2023 / Accepted: 6 February 2023 / Published: 7 February 2023
(This article belongs to the Section Nutrition and Metabolism)
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Abstract

The low-carbohydrate ketogenic diet (LCKD) has attracted increased attention in recent years as a potential treatment option for individuals with McArdle disease (glycogen storage disease type V), and despite the absence of strong scientific evidence of the LCKD’s benefits, increased numbers of individuals with McArdle disease have tried a LCKD. The objective of this study was to collect patient-reported experiences with a LCKD. We aimed to estimate the immediate prevalence of individuals that had tried a LCKD in an international McArdle disease cohort, and we aimed to report on the patient-reported experiences with the diet, both positive and negative. A total of 183 responses were collected from individuals with McArdle disease from 18 countries. We found that one-third of the cohort had tried a LCKD, and almost 90% experienced some degree of positive effect, with the most prominent effects on McArdle disease-related core symptoms (e.g., activity intolerance, muscle pain, and muscle fatigue). Adverse effects were rare and generally rated as mild to moderate. These patient-reported findings underline the need for randomized clinical trials to decisively determine if a LCKD is a suitable nutritional strategy for patients with McArdle disease. The results from this study can prompt and contribute to the design of such a clinical trial.
Keywords: McArdle disease; ketogenic diet; low carbohydrate ketogenic diet; glycogen storage disease type V; survey; patient-reported experiences McArdle disease; ketogenic diet; low carbohydrate ketogenic diet; glycogen storage disease type V; survey; patient-reported experiences

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MDPI and ACS Style

Løkken, N.; Voermans, N.C.; Andersen, L.K.; Karazi, W.; Reason, S.L.; Zweers, H.; Wilms, G.; Santalla, A.; Susanibar, E.; Lucia, A.; et al. Patient-Reported Experiences with a Low-Carbohydrate Ketogenic Diet: An International Survey in Patients with McArdle Disease. Nutrients 2023, 15, 843. https://doi.org/10.3390/nu15040843

AMA Style

Løkken N, Voermans NC, Andersen LK, Karazi W, Reason SL, Zweers H, Wilms G, Santalla A, Susanibar E, Lucia A, et al. Patient-Reported Experiences with a Low-Carbohydrate Ketogenic Diet: An International Survey in Patients with McArdle Disease. Nutrients. 2023; 15(4):843. https://doi.org/10.3390/nu15040843

Chicago/Turabian Style

Løkken, Nicoline, Nicol C. Voermans, Linda K. Andersen, Walaa Karazi, Stacey L. Reason, Heidi Zweers, Gustav Wilms, Alfredo Santalla, Edward Susanibar, Alejandro Lucia, and et al. 2023. "Patient-Reported Experiences with a Low-Carbohydrate Ketogenic Diet: An International Survey in Patients with McArdle Disease" Nutrients 15, no. 4: 843. https://doi.org/10.3390/nu15040843

APA Style

Løkken, N., Voermans, N. C., Andersen, L. K., Karazi, W., Reason, S. L., Zweers, H., Wilms, G., Santalla, A., Susanibar, E., Lucia, A., & Vissing, J. (2023). Patient-Reported Experiences with a Low-Carbohydrate Ketogenic Diet: An International Survey in Patients with McArdle Disease. Nutrients, 15(4), 843. https://doi.org/10.3390/nu15040843

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