COVID-19

This page provides recent informtion about the Coronavirus COVID-19 for the Pompe Community; we hope to keep it regularly updated.
Please keep in touch with the Pompe Support Network by letting us know your experiences and any difficulties where we may be able to help.

Vitamin D protection from the effects of COVID-19

A very recent study of 10,933 people from 25 trials conducted in 15 countries has shown how important Vitamin D is in protecting us from Acute Respiratory Infections (ARI), such as those resulting from seasonal flu and coronavirus infections.

Vitamin D supplementation is recommended for people who have low levels of the vitamin, such as those being denied sunshine by remaining indoors. For more information see the plain English summary and scientific paper here:

Vitamin D supplementation to prevent acute respiratory infections: individual participant data meta-analysis

Key results

"Overall, vitamin D supplements reduced the risk of having at least one ARI from 42% to 39%. We also showed that vitamin D had greater protective effects when it was given daily or weekly to people with the lowest vitamin D levels: the risk of having at least one ARI was reduced from 60% to 32% in these individuals. Vitamin D was not effective in protecting against ARIs when it was given in large, widely spaced doses. Taking vitamin D supplements was found to be safe."


Online Meeting to discuss COVID-19 and Pompe in the UK

On Friday 27th March 2020, Pompe Support Network held its first "Zoom into Pompe" online meeting to discuss the messages being received by the UK Pompe community and other issues arising from the epidemic. Allan Muir's notes of the meeting can be read here: 001 Pompe COVID Notes


New guidance from NHS LSD Clinical Centres

Two documents have been compiled by the LSD Collaborative with guidance from the Specialised Centres. These are PDF files that you may read online or print out for reference and to share with friends and family.

This is a useful guide from MIND to help us maintain our sanity throughout this difficult period:

Coronavirus (COVID-19) Advice (16th March 2020 Update)

We and the LSD Collaborative has helped to review the guidance below for people living with an Inherited Metabolic Disease (IMD), including Pompe disease. Please click the link to view:

Advice from the British Inherited Metabolic Disease Group (BIMDG)

COVID-19 is likely to be with us for some time, and so as well as the general advice to everyone, we would urge our vulnerable group to maintain a healthy immune system by following some of the guidelines given by the Harvard Medical School:

How to boost your immune system

In particular we would emphasise the following extracts:

  • Don't smoke.
  • Eat a diet high in fruits and vegetables.
  • Exercise regularly.
  • Maintain a healthy weight.
  • If you drink alcohol, drink only in moderation.
  • Get adequate sleep.
  • Take steps to avoid infection, such as washing your hands frequently and cooking meats thoroughly.
  • Try to minimise stress.

We hope that you all remain healthy throughout this difficult period, but if you have any particular questions, we would be very happy to pass them on to our national and international experts, please use the link at the foot of this page to contact us.

Online Meeting for UK Pompe Community

Friday March 27th, 11am (London time zone)

The Pompe Support Network is hosting this meeting to enable the UK Pompe community to share experiences and raise any issues that we may be able to help resolve together.

There is no fixed agenda, conversations will hopefully run freely and will doubtless cover some of these topics:

  • Mixed messages received from NHS, Specialist teams, Homecare staff, BBC, etc.
  • Homecare
  • Social distancing, Self-isolating and Shielding
  • Government help for vulnerable individuals
  • Drug holidays - Alternative strategies - diet and exercise
  • Maintaining sanity during isolation

Join the Zoom Meeting using a computer or mobile device, just click on the link below.

You can use your camera or just voice:

Click here to join - https://zoom.us/j/860542784

If you prefer to phone in (landline or mobile), you can use either of the dial-in numbers below.

Dial by your location
0208 080 6592 United Kingdom
0330 088 5830 United Kingdom

Meeting ID: 860 542 784 (enter numbers when requested)

One tap mobile:
02080806592,,860542784# United Kingdom
03300885830,,860542784# United Kingdom



COVID-19 Webinar Recording and Presentation Slides

A recording of the Webinar held on March 23rd 2020 is now available from the Facebook page of the LSD Collaborative.

Pompe Support Network is a proud and active member of the LSD Collaborative: The slides used in the presentation can be downloaded and shared separately. Please do encourage others within the community to view the presentation.

COVID-19 Webinar Recording

COVID-19 Webinar Presentation Slides