Wellbeing | From Long Covid to ME/Chronic Fatigue Syndrome (CFS): Latest trends and employer support

From Long Covid to ME/Chronic Fatigue Syndrome (CFS): Latest trends and employer support

Around 2 million people in the UK alone have had Long Covid for more than 12 months, according to latest data from the Office for National Statistics. And the majority of these people are of working age. In other words, Long Covid is having an ever-growing impact on the workplace.

Reports are now suggesting that some people diagnosed with Long Covid for more than 12 months are having their diagnosis changed to Myalgic Encephalomyelitis (ME), or Chronic Fatigue Syndrome (CFS) for short; a long-term condition, also often triggered by an initial viral infection. ME/CFS would likely meet the definition of disability under the Equality Act 2010, unlike Long Covid, which doesn’t; not yet at least.

So, what should people watch out for when it comes to diagnosis? And what can employers do to help ensure work is viewed as part of recovery?

In our latest #Wellbeing360 podcast, our early intervention and rehabilitation expert Kay Needle puts these questions – and more – to Beverly Knops, Executive Manager and Specialist Occupational Therapist at Vitality360, a persistent pain and fatigue expert and one of Generali UK’s trusted early intervention partners. Here are some of the excerpts from that interview. For the full podcast, go here.

Kay: Can you give us an overview of the similarities and differences between Long Covid and ME/CFS?

Beverly: We’ve been seeing people for many years in our clinics with post viral fatigue syndromes or ME/CFS. So, let me describe these first. Around 50%-75% of people with ME/CFS will be suffering from debilitating fatigue. That’s fatigue that’s stopping them from doing their normal day-to-day activities. They’re usually also experiencing unrefreshing sleep. So, they may sleep but that sleep is likely to be disrupted in some way, so that when they wake up, they don’t feel like they’ve slept.

They’re also experiencing cognitive dysfunction, or cognitive fatigue. So, people could present physically quite well, but their brain function is impacted; their ability to memorise things, to recall and process information, to multi-task. These abilities might all be affected.

We’ve also seen people with something that’s called Post-Exertional Symptom Exacerbation. That means that whatever the exertion – be it physical, social, cognitive – other symptoms are exacerbated, and they feel worse afterwards. The fatigue might be worse, but some people also present with a flu-like illness.

There are lots of other potential symptoms too, from feeling light-headed, faint and nauseous to digestive issues.

We’re also seeing various combinations of all these symptoms in patients presenting with Long Covid.

The core differences are that people with Long Covid are more likely to still be presenting with breathing difficulties, even without any specific lung damage. They might be getting chest pain. And they might still have difficulties with their sense of smell and taste.

Kay: Is there a risk of misdiagnosis at the moment? Do you think it makes a difference in terms of the rehabilitation support that we’re offering? Or is it the case that because we’re focused on somebody’s ability to function – their ability to do their normal day to day activities – that we shouldn’t be too concerned about the diagnosis?

Beverly: I think it’s important if it matters to the client. But generally, amongst health professionals, our preference is to stick with Long Covid as a diagnosis, wherever possible. There does seem to be a greater degree of hope with that diagnosis, in that many people are getting back to normal functioning after Long Covid. And that’s why it’s so important that people get help at an early stage.

When you look at something like ME/CFS, sometimes it’s difficult to retain that sense of hope, because once you’ve got that diagnosis, everything is telling you that it’s a long-term health issue. I do see people getting better from ME/CFS, but the recovery statistics are low.

So, in answer to your question, I think that focusing on the individual – their specific symptoms and the impact of those symptoms on their functionality at home and at work – is more important than the diagnosis. It’s about really personalising the support.

Kay: Are there things that employers could be helping with to ensure the best possible recovery for people?

Beverly: Getting in early is key. Check in with people. If people are giving the impression of some lingering symptoms or they’re having recurrent absences, check in with them to find out what’s going on. Find out: how they are coping; whether work is contributing to the problem; whether there is a way that you can adapt the hours or the work duties to help get to a more sustainable level of activity, which is more likely to promote recovery.

One of the key things for employers is to take a holistic approach. By that, I mean a whole of health approach, looking in a joined-up way at the individual’s mental wellbeing, their physical wellbeing, their social wellbeing.

Kay: If you were to give employers advice about managing Long Covid in the workplace, what would be the key things they should be doing?

Beverly: Overall, I think it’s about looking at this positively all the time. Not what can’t the person do, but what can they do. Can they do two hours of work, even if that’s 40 minutes, then taking a break and doing another 40 minutes? What can they contribute in that time that’s useful, for their own recovery, for their confidence and for their employer.

So, on key things:

  • Communication – listening and understanding. Let the person explain what’s going on for them, because if you’ve never experienced Long Covid of ME/CFS – or don’t know someone who has – it’s hard to get your head around the fact that someone can look quite well some times and then be lying in a dark room at other times.

  • Support a very slow and gradual return to work. Most companies are used to a kind of full week graded return to work, which suits many health conditions. But with Long Covid and ME/CFS, you need to spread that out, so that people start on just a couple of hours and have time to build up their confidence and capacity. All the time assessing what’s working and what isn’t and making adjustments as necessary.

  • Have a setback plan. Consider upfront the ‘what ifs?’: what if symptoms increase and the individual has to take some time off etc? A return to work is unlikely to be a linear process. There are going to be a few bumps in the road. So, it’s important to plan for those, so the person knows how they should communicate that to their line manager or HR and what the outcome might be. It’s about not always thinking that extended time off is the answer, but for all parties to understand that the person might need to pull back for a day or two.

  • Help employees feel valued. It’s really important – and I know this through working with clients – that people are made to still feel they are valued employees; that they’re made to feel wanted to come back and that their skills and experience have not become lost. It’s important to help people feel there is some way of getting back, not just to a very junior role because of their perceived capacity, but to a role that’s in keeping with their experience. Feeling valued is really important.

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