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24.04.20 - ME Association : ME & corona

ME Association : ME & COVID19

We lezen in de onderstaande brief van de "ME Association" dat ME/cvs vaak getriggerd wordt door een acute infectie.
Een terugval of verergering van de aandoening wordt ook vaak veroorzaakt door infecties. Door de COVID19 pandemie dienen we uiterst bezorgd te zijn omwille van het verhoogde risico dat dit nieuwe virus met zich meebrengt voor ME/cvs-patiënten.

To whom it may concern,

MEA Statement: People with a diagnosis of M.E. should be regarded as vulnerable and are deserving of increased support where required 

We would be very grateful if you could provide additional help and support to people who are struggling to cope with myalgic encephalomyelitis (M.E.) at this very difficult time. 

M.E. is a complex multisystem disease involving abnormalities that affect the brain, muscle, and the immune system. It directly affects a person’s ability to function normally, restricts movement and participation in all aspects of daily living. 

M.E. (also known as chronic fatigue syndrome) is classified by the World Health Organisation as a neurological disease and recognised as such by the NHS in the SNOMED CT medical classification index. 

The disease is diagnosed in people of all ages and ethnicities. Around 265,000 people in the UK are thought to be affected. It is often triggered by an acute infection and can lead to loss of function and chronic illhealth for many years.
Relapses and exacerbations are also commonly caused by infections. With the Covid-19 pandemic, we are particularly concerned at the increased risk this new infection poses to people with M.E. 

Research into the quality of life of people with M.E. has found that it is just as disabling and has a greater impact on function and well-being than other chronic illnesses such as cancer and multiple sclerosis. 

Around 25% of people with M.E. are severely or very-severely affected – meaning that they are housebound or bedbound for all or most of the time, rely on others for care and support, and may experience swallowing and/or respiratory problems. 

In relation to COVID-19 infection, the Government has stated that anyone who is entitled to a flu vaccine on the NHS should be regarded as vulnerable, or at increased risk of infection, and needs to practice stringent social distancing measures. 

People with M.E. fit into this category and should be deserving of extra support where required. Because this disease affects a person’s ability to function, they will often be unable to access services and will be more dependent than before on the help of others. 

This extra help might be in the form of access to community initiatives, online shopping and home delivery of groceries and medications, and modifications at work or when working from home, if they are still able to work. 

There are also people with M.E. who have other health conditions that are included on the Government’s extremely vulnerable list. These people will be practising shielding (self-isolation) for at least 12 weeks and registering with the Government – if they haven’t already been registered – and should be entitled to additional help and support including home deliveries of groceries and medications.