Diet

• People with McArdle’s may have a problem with weight gain due to an aversion to exercise caused by their symptoms (page 7a).

• A healthy diet with an appropriate calorie intake to maintain ideal weight is recommended.

• Diet remains controversial, further research is required. Ketogenic diet is being investigated.

• A limited study in 2008 indicates that a carbohydrate-rich diet may be advantageous. (20% fat, 15% protein, 65% carbohydrate – using low glycemic index foods such as vegetables, fruits, pasta, rice, bread and low-fat cheese) [1].

• Some patients report doing better on a high protein diet, and yet others on high fat.

• It is important to keep hydrated during activity.

• 37 g of sucrose (143 calories, equivalent to 9 teaspoons of table sugar)†, in a drink 5 minutes before short-term intense activity (such as sexual intercourse) may ease symptoms in the first 15 minutes [2]. (Some risk of reactive hypoglycaemia.)

• Frequency of use of sucrose should be limited, to avoid the risk of weight gain, e.g. twice per week.

• To date, no nutritional treatments have been adequately proven to be effective [3] in the short or long term.

† Equivalent to a 12 oz (355 ml) can of Coca Cola.

[1] Carbohydrate- and protein-rich diets in McArdle Disease: Effects on exercise capacity. Andersen ST, Vissing J (2008) J. Neurol. Neurosurg. Psychiatry published online 5 Jun; https://doi:10.1136/jnnp.2008.146548.

[2] Effect of oral sucrose shortly before exercise on work capacity in McArdle Disease. Andersen ST, Haller RG and Vissing J (2008) Arch Neurol 65.

[3] Cochrane Review: Pharmacological and nutritional treatment for McArdle Disease. Quinlivan R, Martinuzzi A, Schoser B, (2014).