Hello and welcome to Believe in ME with Rhona Barton. This episode is the start of a short series for Organisations. The aim is to help educate leaders, managers and HR teams about ME & Long Covid. Please feel free to share this series with your organisation.
You can head to www.rhonabarton.co.uk/media for more information about me and my story.
Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts.
Ok, let’s jump straight in!
What is ME?
ME, or Myalgic Encephalomyelitis, is a long-term fluctuating, neurological condition that causes symptoms affecting many body systems. M.E. affects an estimated 250,000 people in the UK, and between 17 and 30 million people worldwide. It is anticipated that this figure will increase following the Coronavirus pandemic due to Long Covid.
The list of symptoms that people with ME can experience is wide and varied and, unfortunately, they don’t seem to fit a set pattern. We do know, however, that those with Long Covid show very similar symptoms.
People with M.E. experience severe, persistent fatigue associated with post exertional malaise. This is the body’s inability to recover after expending even small amounts of energy and can lead to a flare-up in symptoms.
Around a quarter of people with M.E. are severely affected, leaving them housebound and/or bed-bound for long periods. Those experiencing this level of symptom severity are unable to work.
Even in its mildest form, M.E. can have a significant impact on an individual’s life, and not just on their health. A lack of understanding and awareness about M.E. means patients can experience disbelief, and even discrimination, from friends, family, health and social care professionals and employers.
People who have M.E. often say that they, their employer and the people supporting them need more information about how to effectively manage M.E. at work. This podcast series is for anyone employing or managing someone with mild to moderate M.E. and outlines the advice to help you when recruiting and supporting people with M.E.
What are the overlaps between ME and Long Covid?
Both ME and Long Covid have a number of similar symptoms. I’ll cover a few of them here but it should be noted that people will experience their symptoms differently and may be impacted by some more than others. Severity and fluctuation of symptoms over time is something worth bearing in mind.
Post-exertional malaise - Severe and persistent fatigue or exhaustion most, or all of the time, is one of the main symptoms of both M.E. and Long Covid. This feels very different from ordinary tiredness. Simple physical or mental activities, or combinations of activities, can leave people feeling utterly debilitated. People can also experience an increase in other symptoms. The impact of this may be felt straightaway but it can typically take a day or two to kick in and is not significantly improved by resting.
Pain - Pain may manifest as aching muscles or joints, nerve pains or pins and needles, headache or migraine, twitching muscles or cramps. There may be abdominal pain, stomach or bowel problems.
Cognitive difficulties - This may include reduced attention span, short-term memory problems, word-finding difficulties, inability to plan or organise thoughts or loss of concentration – often described by people with M.E. as ‘brain fog.’
Other symptoms can include poor temperature control, loss of balance, dizziness on standing up, hyper-sensitivity to light, sound, odours, certain foods, some medications, alcohol and other substances. The fluctuating nature of these conditions can make it difficult to maintain a consistent level of working.
A task that is easily manageable one day may prove impossible the next. Even when a person’s condition appears to have stabilised, it is common for people to experience relapses or setbacks, when their health deteriorates again for a period of time. This is likely to happen if they have been pushing themselves too hard. Understanding more about the importance of energy management through pacing will help you make reasonable adjustments and provide support in the workplace.
The Impact on people
Whether it’s a member of your team who has been with you for a while or you have made an offer of employment to an individual, considering whether or not to disclose their diagnosis or their symptoms to you, can feel like a difficult decision. Who do they tell? When do they tell? How much do they share? What will this mean for their future? All of these could be playing on their mind and adding an additional layer of worry or stress. The answer to these will depend on their relationship with you.
Given the expectation of fluctuations and the need to be flexible, it will be helpful to schedule regular reviews, rather than only meeting to address problems that may occur. I recommend incorporating reviews into regular employee one-to-one processes in a proactive and supportive manner. This approach is more sustainable, less time-consuming and less costly for employers than reviews triggered by absence or poor performance.
As I’m sure you can imagine, the varying symptoms of these conditions can have quite an impact on individuals and their ability to work. They may need support and guidance from you, their employer, to help them overcome any difficulties they may experience. They may not be able to offer any solutions and rely on you to help them work out what’s possible. Please be open to their need to discuss and agree the best options for them and consider how you may meet it.
For example, you may be advised that commuting during rush hour steals so much energy from their working day. They may need to better manage how they spend their energy during each working day. A possible solution may be changing their working hours to avoid rush hour and doing more home working.
These discussions can be included in your regular review meetings.
That brings me to a few items I’d like you to take away from this episode:
1. Employees with ME & Long Covid may still be able to work depending on the severity of their condition but will require additional support and guidance.
2. The fluctuating nature of these conditions is not just frustrating for the employer but also the employee and their family and friends.
3. Having regular reviews is more sustainable and manageable than reviews that are triggered by absence or poor performance.
That’s it for today everybody. As I’ve mentioned, this episode is the start of a short series for Organisations. The aim is to help educate leaders, managers and HR teams about ME & Long Covid. Please feel free to share this series with your organisation.
You can head to www.rhonabarton.co.uk/media for more information about me and my story.
Thank you for listening. Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts.