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McArdle Disease (GSD5)

Diagnosis & Follow up

It is usually a long and frustrating process to get diagnosed with this ultra rare disease, but once you are it opens the door to understanding and improvement.

COVID-19 and McArdle’s

From Andrew Wakelin, McArdle’s Coordinator

3 April 2020

The McArdle Clinic has written today to those attending the clinic to provide guidance regarding COVID-19 coronavirus. This provides very useful guidance and links. It offers further assistance, mainly by email, should it be needed. 

Please see the item dated 2 April on our COVID-19 page, where you can download a PDF of the letter.

The information and guidance in the letter will also be of interest to others in the UK who do not manage to attend the Clinic. However, please note that the individual further advice offered can only be provided to those who attend the clinic, and not to others in the UK or abroad.

From Andrew Wakelin, McArdle’s Coordinator

25 March 2020

It appears that letters of advice dated 21 March regarding Coronavirus have been issued to some (not all) people with McArdle’s advising them to stay at home for 12 weeks. They purport to come “From your GP surgery” and advise that the person is “at risk of severe illness if you catch Coronavirus”. We do not know why these have been issued to people with no other underlying health condition, only McArdle’s. It may be that McArdle’s (GSD5), which does not have respiratory involvement, has been confused with other GSDs which can have respiratory involvement.

The letter instructs the person not to leave their home, but it is not clear whether this applies to all recipients, or only to those who have developed symptoms of coronavirus. A person with McArdle’s who does not leave their home for 12 weeks will be at risk of losing a great deal of aerobic fitness, which is likely to be debilitating.

We can only suggest that you endeavour to contact your GP surgery to confirm whether they did send this letter, and if so what the basis of it was. If the concern is only about McArdle’s you may wish to challenge the 12 week isolation instruction.

If you do self-isolate for 12 weeks, I would recommend that you do all you can to maintain aerobic fitness with a daily execise routine.

From Andrew Wakelin, McArdle’s Coordinator

23 March 2020

Knowledge is very much still developing. However, my understanding at this time is that McArdle disease does not pose any particular additional risk to people with COVID-19.

Although McArdle’s is an underlying health condition, it is not the sort of condition that the doctors are concerned about when they use that phrase in regard to COVID-19. The concern seems to be primarily about the immune system, lung/chest and heart conditions.

The starting point for us all in the UK must be the government’s advice on this pandemic. In addition, there are some COVID-19 general notes on the IamGSD website.

Some viruses can cause rhabdomyolysis or make it worse. Although it is not known whether this applies with COVID-19, we should try, even more than usual, to avoid rhabdomyolysis and a visit to A&E where relevant care may be overloaded.

Repeated intense coughing can cause cramps in our abdominal muscles, and coughing is a symptom of COVID-19. It is probably a good idea for us to try, every few minutes, to suppress the cough for a break of at least 30 seconds.

As of today some people with McArdle’s and no other underlying condition have had government notices to self-isolate. Yet other people in the same position have not had the notice. It seems possible that the notices are being authorised by GPs and they are taking different views on the need. There does not appear to be any scientific evidence that such people should self-isolate.