COVID-19 What you need to know…..

The myaware medical committee have recently put together an interview with Bethan Peach (chair of the myaware medical committee) covering all the frequently asked questions regarding Coronavirus and the vaccines. There is also a transcript of the interview to read.

You can read a full transcript of the interview here.

Information on Covid-19 Vaccines

COVID-19 vaccine - information for patients with myasthenia gravis or related autoimmune conditions

COVID-19 vaccines are becoming available, and myasthenia patients will be offered it at a certain point depending on their priority in relation to age and vulnerability.
The vaccines that are (or will soon be) available are not live and are therefore thought to be safe in people on immunosuppression or other type of immune deficiency.

There are unknowns: the degree of effectiveness of the vaccines in individuals across all ages, other illnesses or health conditions and treatments has not been fully studied. For example, it is not yet clear if patients on medications to suppress the immune system used to control the myasthenia or other autoimmune conditions will be able to respond well to the vaccine or not.

From the myasthenia point of view, e.g. any exacerbations following vaccination, we cannot anticipate any specific or relevant problem. However, doctors will be able to review patients if and when necessary, the same way as when patients have exacerbations of the disease in different circumstances.

Patients with myasthenia on immunosuppression, e.g. steroids, azathioprine, mycophenolate, methotrexate or cyclosporine are advised to continue their treatments (e.g, prior to and after receiving the vaccination). If patients are uncertain or have concerns about recent issues, such abnormal blood test results, they should speak to their doctors (GP and or neurologist).

Patients that have been on treatment with rituximab can be vaccinated; however, patients and their doctors need to find the ideal time for the vaccination, because the immune system will be, for some months, in between infusions, unable to respond well to the vaccine. Therefore, patients may need to adjust the time for the next rituximab infusion or the date of the vaccination. We recommend that the vaccine is received 3 or 4 months after the last rituximab infusion and at least 4 to 6 weeks before the next infusion.

We recommend that patients contact their GP if they have further concerns regarding the vaccination, either before or after receiving it. Patients are advised to seek medical attention locally if they experience side effects from the vaccine. Please, record the symptoms in a diary to report to doctors.

If patients experience new symptoms or exacerbations of myasthenia, they should contact their local neurology team and GP. It is very appropriate that local teams get in touch with the respective myasthenia centre where patients are regularly followed-up so their neurologist can advise on myasthenia management.

Myaware Medical Committee
23rd December 2020

NHS Vaccine information

Some of our members have received a letter from the National Hospital of Neurology and Neurosurgery regarding coronavirus vaccines, please click below for more information and to read the letter.

NHNN letter

Myaware endeavours to inform our members of information regarding vaccine developments at the earliest possible opportunity. However, at this time we need to wait and trust that there will be expert advice on the best vaccines for different groups of patients, including those with autoimmune disorders and people who are in immunosuppressant therapy.

What is Coronavirus/COVID-19?

COVID-19 is a disease caused by a new coronavirus that affects the lungs and airways. It is related to viruses that cause the common cold. Unlike the common cold, this virus is new, so nobody has immunity to it.  The entire population is therefore at risk of catching it.  It is estimated that as many as 80% of people who catch the virus may experience relatively mild or no symptoms but are able to pass on the infection to others.  People who do develop symptoms are at risk of passing it on to others for up around 7 days before symptoms emerge. The commonest symptoms are high fever, cough, or shortness of breath. 

People aged over 70, with long-term conditions or a weakened immune system are at risk of developing complications of the infection, including secondary lung infections or damaging excess activity of the immune system.

Some patients with particular neurological conditions, who receive certain treatments for neurological conditions, or who also have other non- neurological conditions are at increased risk of complications of COVID-19.

What are the new National Restrictions for Covid 19?

Please also see additional specific guidance for England, Scotland, Wales and Northern Ireland.

You can sign up to receive updates on government advice here:

Click to Register

Clinically Extremely Vulnerable People

There is updated guidance for anyone who has been identified as clinically extremely vulnerable. If you are in this group, you will previously have received a letter from the NHS or from your GP telling you this. You may have been advised to shield in the past.

Criteria used to identify patients who are at high risk of contracting COVID 19 

For guidance for clinically extremely vulnerable individuals follow these links for more information where you live in Scotland, Wales, Northern Ireland and England

Find coronavirus help in your local area

Find out what help you might be able to get from your local council if you’re affected by coronavirus (COVID-19).

NHS England has recruited an amazing team of volunteers to help people in England to stay safe during coronavirus (COVID-19).
Our volunteers help people:
• Avoid busy places by collecting their shopping, medicines and other important items
• Have regular contact with other people by making regular friendly phone calls
• Get to medical appointments by giving lifts.

Employment

Workers across the United Kingdom will benefit from increased support with a five-month extension of the furlough scheme into Spring 2021.

Advice on staying COVID safe in the workplace

General information:

Here you can find out some general information about changes to myaware support and information from the Association of British Neurologists.

For specialist guidance on Benefits, Welfare, Education, Employment, Motoring and much more see our Benefits and Welfare advice page or contact Steve Bradshaw, myaware’s Benefits and Welfare Officer at [email protected] or on 01332 290219.

Living with myasthenia