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.
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Authors | Nicoline Løkken, Nicol C Voermans, Linda K Andersen, Walaa Karazi, Stacey L Reason, Heidi Zweers, Gustav Wilms, Alfredo Santalla, Edward Susanibar, Alejandro Lucia, John Vissing |
Journal | Nutrients
(Nutrients)
Vol. 15
Issue 4
(Feb 07 2023)
ISSN: 2072-6643 [Electronic] Switzerland |
PMID | 36839201
(Publication Type: Journal Article)
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Chemical References |
- Ketone Bodies
- Carbohydrates
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Topics |
- Humans
- Glycogen Storage Disease Type V
(drug therapy)
- Diet, Ketogenic
(methods)
- Diet, Carbohydrate-Restricted
(methods)
- Ketone Bodies
- Patient Reported Outcome Measures
- Carbohydrates
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