- A Letter from Allan Muir, Chair Pompe Support Network
Posted On: 26/11/2020
Late-Onset Pompe disease and Long Covid-19
Personal views of Allan Muir, Chair Pompe Support Network
26th November 2020
It is my understanding that the Covid-19 shielding advice for many adult Pompe patients is that they are at no greater risk from the virus in terms of symptoms, hospitalisation, ICU, and worse. However, I personally have grave concerns that the symptoms of LOPD would be severely exacerbated if their condition progressed to what has become known as Long-Covid; particularly, symptoms of muscle weakness, GI symptoms, brain fog, lethargy, fatigue, etc. I do worry that if anyone with LOPD and respiratory insufficiency was put on a ventilator, they would struggle to be weaned off again.
Whilst I would never suggest that people living with Pompe disease should ignore advice from their specialist medical teams, I do think that we should, as a community, be extra cautious during this pandemic; and indeed I do know that many are deciding to shield as “clinically extremely vulnerable” adults despite reassurances from the NHS.
We hear constant news of progress with vaccine developments, and I do hope that our community can be protected as soon as possible; but the timing is still unclear. So, until we all feel completely safe from Covid-19, there are some very interesting treatments in the pipeline that offer protection from the virus and, more importantly, its long-term effects.
One such treatment that has been shown to be safe for other conditions (MS, COPD, Asthma) is SNG001, being developed by a Southampton-based company, Synairgen plc (https://www.synairgen.com). The therapy is currently under study in the UK and soon to have trials approved by the FDA in the USA. So, should you be unfortunate enough to contract Covid-19, and be concerned about its long-term effects, you may like to discuss joining a clinical trial or accessing the treatment through its Managed Access Programme (MAP). The MAP involves extra paperwork for your doctor, but you would be sure of receiving the treatment; being part of a clinical trial would risk being part of the placebo arm for the initial stage.
There is currently a placebo-controlled home study trial that you could join, where you would only meet the study team through a video-link. You would need to be aged between 50 and 64 to take part; take a look at their Facebook page if you’re interested: www.facebook.com/covidtrialathome. Other phase 3 trials are due to take place around the UK and 20 countries around the world very soon.
If you would like to listen to an update from Professor Sir Stephen Holgate on this therapy, please follow this link. And for those interested in the science, the phase 2 study results were recently peer reviewed in the Lancet: “Safety and efficacy of inhaled nebulised interferon beta-1a (SNG001) for treatment of SARS-CoV-2 infection: a randomised, double-blind, placebo-controlled, phase 2 trial”, and can be accessed here.
I do hope that you all stay safe and have no need for such treatments, but they are worth discussing with your GP or specialist team if you are unfortunate and contract the Covid-19 virus.