This page is updated regularly as and when new information becomes available.

https://www.gov.uk/coronavirus

https://www.nhs.uk/conditions/coronavirus-covid-19/

Social distancing measures have recently been introduced in order to halt the spread of Coronavirus. Please note that social distancing measures apply to everyone in the UK, regardless of whether they have myasthenia or not.

Please read and follow the Government’s guidance on social distancing here: https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults

Myaware Head Office Due to updated advice from the Government regarding social distancing, we have taken the decision to temporarily close our Head Office. This should have limited impact on our telephone communication – if you call our Head Office number on 01332 290 219 between 9am-5pm Monday-Friday, you will still reach a member of our team. You can also email us at [email protected], or reach us on Facebook: www.facebook.com/myawareuk.

Support Group Get-Togethers & Conferences We have also taken the decision to cancel all upcoming support events until further notice. This is to protect members of the myaware community, the myaware team and all of our loved ones. You can still receive support by contacting our team using the details above or by contacting your local Support Worker, details of which are available here: https://www.myaware.org/Pages/FAQs/Category/our-team

Please remember that myaware members can access emotional support via our counselling service and advice on benefits and welfare totally free of charge by clicking on the links below:

https://www.myaware.org/welfare-advice

https://www.myaware.org/emotional-support

For more information on coronavirus support for employees, benefit claimant and businesses please visit:

https://www.gov.uk/government/news/coronavirus-support-for-employees-benefit-claimants-and-businesses 

https://www.gov.uk/government/publications/support-for-those-affected-by-covid-19/support-for-those-affected-by-covid-19

If you wish to renew your myaware membership you can do so online here: https://www.myaware.org/forms/join-myaware

If you would like to make a donation to support people living with myasthenia, you can donate here: https://www.myaware.org/appeal/donate

We understand this is an uncertain time for everyone, but we remain committed to supporting all people living with myasthenia. Updates regarding Coronavirus are being published as soon as we receive them here on our website and on our social media pages and groups.

Thank you all for your patience and understanding during this unprecedented time.

GUIDANCE FOR PATIENTS WITH MYASTHENIA OR LAMBERT-EATON MYASTHENIC SYNDROME IN REGARDS TO THE THREAT OF WIDESPREAD CORONAVIRUS INFECTION

By the members of the myaware medical committee

Background

There are uncertainties about the risk of the covid19 infection and its outcomes on the general population. The government and the Chief Medical Officer have acknowledged that the risk of widespread infection has raised and the numbers of those affected continues to increase. It is predicted that the duration of an epidemic in the UK, if it occurs, is 6 months.

Myasthenia and Lambert Eaton Myasthenic Syndrome (LEMS) may be at risk of more severe symptoms and outcome than healthy individuals. Factors that may contribute to estimate that risk include the patient’s age, type and severity of the disease, their treatments and co-existence of other health problems.

Majority of the Myasthenia or LEMS patients are currently over the age of 50 years. Myasthenia may affect muscles that are relevant in maintaining respiratory function, and this may deteriorate when patients have an infection, particularly of the chest. Many people with Myasthenia or LEMS are on medication to suppress the immune system. The additional risk that these treatments may cause is difficult to estimate, but it is possible that the risks of stopping such treatments are high. Some patients with Myasthenia may also have had a thymoma, which may contribute to depress the immune system.

Individuals living with CMS are at no greater risk of catching the infection because of immunosuppression, however any respiratory complications may well affect all patients. If you are admitted to hospital because of COVID-19, please ensure that you advise healthcare professionals of all underlying diagnosis.

General health advice

We aim to give general advice. This information will not replace your local doctors’ advice and local health institutions’ guidance. Follow also the government general advice, which you can find on the government and NHS official websites.

The following link provides relevant information to everyone, and it is regularly updated.

https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public

The nhs.uk site provides information about symptoms of coronavirus, how to reduce spread with hand washing and the number to phone if you have symptoms.

https://www.nhs.uk/conditions/coronavirus-covid-19/

 

Specific advice for patients with Myasthenia or LEMS

  1. If you are in remission or with only minimal symptoms and off medication, follow the general advice.
  2. As a general rule, patients on any treatment should not stop or alter their medication without discussion with GP or local neurology team.
  3. Symptomatic treatments such as Pyridostigmine (Mestinon) or 3,4 -Diaminopyridine do not affect the immune system and its ability to fight infections. Therefore, patients on those treatments are advised to continue taking them unless their doctor recommends otherwise.
  4. Patients taking any of the following medications (alone or in combination): steroids (prednisolone), azathioprine, mycophenolate mofetil, methotrexate, cyclosporin or tacrolimusplease continue to take your tablets as normal. There is no evidence that these medications might increase your risk of coronavirus infection and its complications, but it is possible that, at least in some patients, the risk is increased. However, in almost all cases, that risk is outweighed by the benefits of the medication in reducing the chance of deterioration of the Myasthenia or LEMS and its subsequent disease complications and including respiratory problems, hospital admission and acute treatments, such as high dose steroids, plasma exchange or intravenous immunoglobulin (IVIG)
  5. Myasthenia or LEMS patients receiving rituximabinfusions have a risk of viral infections moderately increased, so you may be more prone to coronavirus and its complications. However, the risk is balanced by the effectiveness of rituximab in keeping the illness stable and possibly in remission, depending on the cases. Therefore, the treatment may continue as normal in majority of the patients. The neurologists looking after such patients will assess the situation case by case. It is possible that, in some cases, the consultant may recommend delaying the infusion if appropriate, ensuring that the disease continues under good control and patient has the lowest possible risk of coronavirus infection or its complications.
  6. It is well recognised that older adults, particularly elderly people, and those with other health problems, such as recurrent and severe infections, diabetes, malignancy, respiratory / lung disease or heart problems, have higher risk of developing a more severe illness if they have coronavirus infection. Many patients with Myasthenia or LEMS have such problems. Therefore, and in addition to the general and specific recommendations above, older patients and or with other significant health conditions, should have easy access to their GP and neurology team.
  7. Any patients with Myasthenia or LEMS that are diagnosed with coronavirus infection are recommended to inform the health professionals about their illness/es and treatments. The team looking after acute patients will deal with the clinical situation accordingly as the clinical approach may differ on a case by case basis. Be reassured that a neurology team will also advise particularly in regards to the Myasthenia or LEMS.

Further advice for patients with Myasthenia or LEMS

All patients should have written information about their condition/s and the list of medications at hand to inform the health professionals either by phone or face to face, depending on the circumstances.  

At this time, decisions regarding whether or not people with Myasthenia or LEMS can travel, should be made by the individuals themselves. Considerations should include age, all health conditions and if the need to travel is necessary. For more information on places that are of increased risk please visit: https://www.bbc.co.uk/news/uk-51768274

If patients need to travel, they should take with them information about their Myasthenia or LEMS (as above). They are recommended to take with them enough prescribed medication to cover a longer period of time than they expect to be away, in case their return home is delayed because problems related to the widespread of coronavirus.

Advice for family members and caregivers

Family members and caregivers of people with myasthenia gravis should take appropriate precautions and take extra care to avoid bringing COVID-19 home. They should regularly monitor their loved ones. People who show symptoms of COVID-19 should avoid visiting their family members until the self-isolation period is complete.

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