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Guest blog

M.E. and long-COVID

Jennifer Morris, Consultant

Jennifer Morris recalls her diagnosis of M.E. and as more and more people experience long-COVID, their similarities and impact on the world of work.  

Diagnosis of M.E.

When I was first diagnosed with Myalgic Encephalomyelitis (M.E.), I had mixed feelings about it. As a condition with no direct diagnostic ‘test’, it is identified via a process of exclusions, until the alternatives are ruled out. The diagnosis gave a name to what I was experiencing, which felt both liberating and condemning; I finally knew what was happening and there was no escaping it. At present, there is no known cure.

M.E. is a chronic, fluctuating, neurological condition, which is complex to understand and varies enormously between the individuals who live with it (approx. 250,000 people in the UK, around 17 million people worldwide, so we’re in good company!). Even the updated clinical guidance from NICE, which was due to be published in August, has been postponed due to conflicting views about how M.E. should be managed.

M.E. and long-COVID similarities

Now, in the wake of the COVID-19 pandemic, significant numbers of people are experiencing the debilitation of ‘long-COVID’. There are similarities being drawn between long-COVID and M.E., because they share a range of symptoms and are diagnosed by the absence of another explanation. As with M.E., people who are experiencing long-COVID are experiencing it differently, so it is complex to describe and to manage. And as with M.E. there are currently no drug treatments, so people have to focus on managing their symptoms and gradually increasing activity.

These two conditions are not the same, but there are sufficient similarities for us to be able to empathise with and support each other. So, on a personal note, here are some things I have learnt from living with M.E., which could be helpful to people living with long-COVID:

  • Tell the people you trust what you are experiencing, much of which will be non-visible to others. These are difficult conditions for people to understand from the outside, so it helps if you can give people the lowdown
  • Tell your manager and colleagues what is happening and how it is impacting the way you work – many of us spend more time with our colleagues than with anyone else, so treat these people as your ‘A Team’!
  • Find your tribe. Connect with support groups and your workplace disability network – whatever you are experiencing, you don’t have to go through it alone
  • Generally speaking, people will want to help, so ask them for what you need and tell them how they can support you
  • Friends and family may want to give you advice, but it can be exhausting to listen to. Be clear with people when their advice is unhelpful – if they want to do something useful, they can make you a lasagne!
  • Sometimes, when I feel at my worst, I give myself a little talking to and it goes like this: “you are not a failure, you are not lazy, you are not letting people down, you are not broken, and you are not going to feel better by fighting your own body. The world is not going to stop turning if you step off it for a while. You need to rest, you need to listen deeply to your body, and you need to treat yourself with the kindness, compassion and care that you would give to someone you love.”

You may find our COVID-19 toolkit helpful for your teams, employees and customers

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