Episode 11 - Learn about ME and Occupational Therapy

In this, the eleventh episode in our Learn About ME podcast series, we discuss how Occupational Therapy can support people living with Long Covid and M.E. Our guests are Katie Davies, Occupational Therapy Team Lead in NHS Grampian; and Corinne, a patient with Long Covid.

 To avoid potential harms by energy management being wrongly applied, the 2021 NICE guideline for ME/CFS recommends that, “in specific circumstances, people with ME/CFS should be referred to a physiotherapist or Therapist (OT) in an ME/CFS specialist team.”

 OTs can uncover the relationship between the challenges people face, their environment and the daily activities they need and want to carry out.

 The podcast highlights the importance of taking a person-centred approach and being flexible from the beginning, with practical tips based on experience. 

 Corrine talks about the difference occupational therapy made to her, including supporting with pacing, while Katie highlights the need for OTs to understand post exertional malaise (PEM) and how it impacts in ME/CFS and Long Covid, triggered by the smallest amount of activity (physical, cognitive, emotional). 

 Any healthcare professional can learn more about ME/CFS and the vital adjustments the people may need in consultations and support services by taking Dr Nina Muirhead’s free 60-minute Learna CPD module.

Transcript

Clare: Hello and welcome to the Learn About ME podcast series. Thank you for tuning in today. I'm your host Claire Ogden and I work at Action for ME, a national charity supporting people of all ages with ME CFS. Today's episode is Learn About ME and Occupational Therapy, the latest in our series of podcasts.

All of our podcasts are available on Buzzsprout and Spotify. We are funded by the Scottish government to deliver a medical education project. This project aims to increase the confidence of health and social care professionals in diagnosing and supporting patients with the health condition, myalgic encephalomyelitis, known as ME or ME CFS.

Alongside developing a series of podcasts, we are encouraging medical and social care professionals to complete an online module. worth one CPD point to enhance their knowledge of ME. You can find out more and complete the module by visiting the Action for ME website at actionforme. org. uk. Please note this podcast does not offer any medical advice, so please contact your health professional if you need this.

If you need support to discuss ME with a GP, There are resources on our website that can help with this. ME is a long term, fluctuating neurological condition affecting an estimated 21, 000 adults and children in Scotland. This podcast is an introduction to how occupational therapists expertise and advice can improve the quality of life for someone with long COVID or ME.

An occupational therapist can help people to overcome challenges they have in completing everyday tasks or activities. They can examine the relationship between the activities that you do every day alongside the challenges you face and your environment. In this episode, we're also going to be talking about long COVID.

Long COVID is defined as COVID symptoms that last longer than 12 weeks. A proportion of people with long COVID have one or more of a cluster of symptoms, including post exertional malaise, that are consistent with a diagnosis of MEZFS. With me today is Katie Davies, Occupational Therapy Team Lead, NHS Grampian, and Corinne, bringing personal experience of using occupational therapy support for long COVID.

Corinne, welcome, and please can you tell us a bit about your experience of long COVID? 

Corrine: I got long COVID two years ago, and since then, it's been, I would say it's been a journey with lots of ups and downs. I have more ups now than downs, but it's been a, it's been a very long two years. Initially, it involved me not being able to even walk up the stairs without becoming totally breathless.

A shower would be the one activity I could do in the day. Dizziness, brain fog. I felt totally overwhelmed with any kind of busyness in the home and just the inexplicable exhaustion. And if you compare that to pre long COVID, I was working full time. I had grown up children living with me at home. I would see friends.

I've got dogs, busy life. You know, it just went from day to night, just really awful experience. I was bed bound for the first few weeks. And then, very slowly, I managed downstairs. But it was basically lying on the sofa for most of the day, um, and just, you know, building up, trying to even like, you know, make my own breakfast or, you know, get a shower and then come downstairs, but just a very, very slow process.

So it's, it's totally transformed my life. Um, and it's a life I don't recognize now, but I've just learned to adapt to my limitations. Why did you first decide to seek out occupational therapy? Well, I was quite fortunate in that I didn't really seek it. Um, my GP got in touch with me at the end of 22. So it was actually about eight months in to long COVID that there was nothing the GP could offer.

They hadn't found anything on blood tests or anything and they would just issue me with a sick line every one or two months. And then they got in touch with me and said, I wonder about an OT referral. And at that point I was happy to try anything. So I said, absolutely, you know, refer me if there's any advice they can give, I'm happy.

to accept that advice. 

Clare: What difference has being able to access occupational therapy made to you living with Long Covid? 

Corrine: So, how it helped me I would say, is that I was basically flying blind. I was You know, reading online, you know, joining Facebook groups, gleaning all the information I could, but not really knowing if there was any scientific backing for this.

Basically just trying to fumble my way through areas, different areas of support, trying different vitamins and things. but not really getting anywhere. And then by speaking to Katie, who was my, the OT I was referred to, I was able to have that platform then to discuss all these things with Katie. And obviously she had experience of ME and long COVID and she created this space where I was able to speak to her and she could advise me on different ways I could, you know, think about my life.

A big thing was, this is very important, Corinne, and you're important. And rather than sort of getting anxious about that fact I couldn't do anything, She gave me that feeling that it was okay, you know, and I could slow down, I could relax, and I could take my time getting well. And within that, she then, you know, gave me advice on sleep, on diet, on pacing my day out.

It was basically planning. I almost saw it as my new job. So rather than going to work each day, I would get up in the morning and I would plan, try and do a little plan for the day, which might, might not come to fruition, but I was able to plan and that could be just a matter of get up and shower, you know, feeling like that was a result at the end of the day rather than criticizing myself for not being able to do more all the time.

I just felt, found it very supportive. To have that person I could go to and also the invaluable advice she gave me. And I did, I took all the recommendations. The other good one for me was the boundary setting. You know, the, about people around you taking your energy. Your energy becomes the most precious thing you have.

And you've got to use it wisely. And it was just understanding that it's okay to say no to people. 

Clare: Is there something that might help others with Long Covid to access occupational therapy that you think would be helpful for them to 

Corrine: I sat for eight months basically, you know, in no man's land. And I would say, ask your GP as soon as possible to refer you to OT support.

The thing is, you're surrounded by experts in your family, your friends. They all think they know what it's like. You try and explain, but you can't explain the level of exhaustion that you feel. It's a very difficult thing to explain. So to have actually somebody who is an expert in this field, you know, And then to be able to say to these people, well actually, I've got a medical professional who's advised me to, you know, it's, it just, it gave me just that sense of security, sense of peace, it reduced my anxiety around it and allowed me to do.

to heal in my own time, in my body's own time. 

Clare: Katie, what's the most important thing you want to tell occupational therapists about supporting someone with longer Covid or ME? 

Katie: Okay, so I think the most important thing is needing to understand the condition and the impact that symptoms can have. So that actually has to happen before you even make that initial appointment.

So it might be a case that I would offer to go out and see somebody at home, which could be less tiring for them coming to a clinic, and it gives me a chance to see them in their own environment. But for some people that can be really exhausting, so we'll often actually offer a virtual appointment, which is how Corinne and I have communicated.

We've never actually met in person. So I always start the beginning of a session with also asking how, how long they think they'll be able to concentrate and cope with a routine.

So that I know to wind the conversation up before they start to, to feel fatigued. And that means that the sessions can sometimes only be 20 minutes and can take a number of sessions and appointments before I gather all the information that I actually need. And it's also sometimes useful to speak to family members and carers.

So that's something else that I would, And one of the things I like to do after a session is to email the person with a brief summary of all the points that we've discussed because I know that it's been tiring for them going through everything, but if they've come back to, you know, a summary of what we've discussed, that can be really helpful.

So obviously, what is really important is that we use a centred, a person centred approach. And that helps them realise that I'm there to support them. I always say I can't change your condition, but what I like to try and do is help you find ways that you can use your limited energy as effectively as possible, because that energy is really precious.

And so my assessment is often quite different to how it would be if I'm working with somebody else, you know, with a, for example, the longer term condition. And, you know, often I'll go out and see somebody in their own home and I would be asked them to carry out a task so I can observe how they manage.

I'm not going to do that with somebody with long COVID or ME. So obviously, I need to adapt my assessment and the questions that I'm asking according to that, So, for example, if they say to me they're struggling with sleep, that might be the main focus initially for the first few sessions. Or if they're struggling with concentration and cognitive tasks, often referred to as brain fog, then me asking them loads of questions is going to really drain the batteries.

So, we have to bear in mind, all of this before we start doing anything else. And the other, one of the other main things is that we can often, I can often be working with somebody for months, even years, there's no quick fix. You know, it's important that you take time, realize that if I'm giving somebody some suggestions that they need time to work on that.

So I'm not going to be going back three days later as I might do with the rest of the people that I'm seeing in my caseload. And, and as an OT, I think a lot of people just assume that we, you know, A large part of our role is providing equipment, which is not something I do that much for this client group.

Sometimes I do, but the main focus is not on helping them to become as independent as possible, not at this stage, or to save their energy by using equipment, but what I really think is important for OTs is to make sure that they understand that Their role is to help the person understand their fatigue and find ways to manage it through using different techniques such as pacing.

And so the O2 role can really vary according to each person throughout the various stages of their condition, but with the overall aim of trying to regulate their body systems, trying to achieve stability and making sure they balance activity with rest.

So post exertional malaise can be triggered by the smallest amount of activity, which could be physical, it could be cognitive, and it can be totally unpredictable and completely out of proportion to the amount of energy that's being used. So it's really important to understand this when working with someone with long COVID or ME CFS.

Um, so when someone has, they want to try and work out what maybe triggered it. Sometimes there's no obvious cause, and there could be a delay in their symptoms from 12, 48, even up to 72 hours. And although there's no cure, the data definitely indicates that people who learn to pace can have fewer symptoms.

So we talk about pacing, we hear that a lot, but what is pacing? And that is something that I find is a really difficult thing to, to get the hang of. And it takes a lot of practice. So pacing is about learning to balance activity with rest. But in order to do this, we need to know how long we can spend on each activity, how to alternate activity with rest, and also how to stick to a plan of what to do each day.

And doing this can help reduce that cycle, which often happens with someone when they maybe have a better day, they try and do a bit more. But we know with PEM that this can happen at any time, sometimes no obvious trigger. So the hardest part of managing that fatigue is working out a baseline, and this means working out a level of activity and rest that they can manage on a day, on a day to day basis, every day, without making their symptoms worse.

And that, as I said, takes time to work out. It's not the same for everyone. So what I'll often do is ask somebody to complete an activity diary every day. So we can see exactly how they're spending the day hour by hour and do that for a week. And then we'll go through that diary in detail looking at their activities or their occupations and that means any task that they're doing and that includes things like getting in and out of bed, thinking about what they're going to have for lunch or maybe chatting with friends.

And I also need to then try and work out how much energy each of those tasks needs. So, for example, if someone was walking, say, through to the kitchen, that would lose, use less energy than walking around the supermarket. But I also need to look at the types of activities, so not just the physical aspects, but as I've said, the cognitive tasks that use brain energy, such as concentration, learning a new skill, but also things that they're doing that are emotionally and socially demanding.

And also the environment they're doing that in. So it could be somewhere where there's bright lights, which are really, you know, draining them down as well. So when we go through the diary, it could be really helpful. I can look at whether they're resting or sleeping a lot during the day, and it might highlight certain aspects.

So I maybe need to look at their sleep and their diet, which are key ways of increasing energy. But people often find the diary can also be really helpful for them and help them to plan ahead and prioritize what they need to do. So we'll also look at rest to make sure that somebody's using rest regularly as well as looking at their activity because rest is really important and a lot of people see that as giving in and they think that maybe sitting, reading a book, watching TV is rest, but it's not.

They need to rest the brain as well as the body and getting that balance is really important. So I would say pacing for some people can be really difficult, you know, for somebody who's maybe got young children, somebody who lives on their own. Or even somebody who can't take time off work because they can't get sick pay.

So that is really challenging. So, I have to always bear in mind that, you know, the pacing can be helpful, but it can't, doesn't always work for somebody at that particular time and work alongside them at the level they're at. So hopefully, pacing will help them to feel better equipped to manage the situation and hopefully prevent triggers, but it's always just working alongside.

the person that particular time. 

Clare: Can you tell us what content in the learner CPD module you found useful and relevant for occupational therapists? 

Katie: Yes, so the, the module, I've actually done it a couple of times because I did it and it first came out and I thought I need to review this again because I'm all, we're always learning.

Um, so the questions relating to the, the, So diagnosis of ME criteria I found was really useful and would be really helpful for anybody starting off in this area. And there's also some references to long COVID as well, which I think is really important. And it would be really helpful for people. I've been using it with some staff during supervision and for training for, for, for other staff.

There was one question that I found really helpful and that was one about the great doctor who was struggling with fatigue. hadn't actually been diagnosed, but they'd been using their annual leave to rest because fatigue was a problem and they were keen to return to work. And the feedback in that question was really good because it also highlights the risks of pushing through and returning to work too early.

And I've often, you know, I have received quite a few referrals from people with long COVID asking, can you support them get back to work? And actually what we've found is that They're unable to manage the day to day tasks. So the thought of being able to get up in the morning, get washed, get dressed, get breakfast.

driving the car to get to work often highlights the fact that they're just not ready to go back to work. So that was one of the, one of the key aspects that I thought was really particularly helpful. 

Clare: How can people with ME and long COVID access occupational therapy support? 

Katie: Um, well, I suppose it depends where you live, um, as to what the pathways are.

And, as Corinna said, she was referred by her GP, but not all GPs will necessarily think about referring. So I think, I would definitely suggest that if you're, if anybody's wanting to make a referral, they either speak to their, to their GP and ask for an occupational therapy referral, or, you know, Or they're perhaps a consultant if they're seeing a consultant in the hospitals.

Occupational therapists work in all different services, and again that varies from area to area. So it could be that you, you know, have seen an occupational therapist who maybe works in mental health or community rehabilitation like I do, or in a social work council service where they're looking more at sort of adaptations.

Um, so I would suggest, um, you know, The first point is go, go and ask your GP the information for, for locally where, where you could get the support. 

Clare: Corinne, is there anything that Katie's talked about that you'd like to reflect on? 

Corrine: The practical. advice that Katie gave me. I have all that now in my toolkit and it is a toolkit that you sort of build up about how you cope with the fatigue.

Um, and I'm much more confident now about saying to those around me that No, I can't do that and I just need to rest. And as Katie said, it's not rest and watch the television. It's rest and have total peace and quiet. I've actually created a space in my home where I can go and when I'm in there, my husband knows not to, not to interrupt me because he knows I'm, it's, it's my space for resting.

So, um, I am continuing on this journey. I'm not fully recovered, but I do find now that I am getting more and more times where I'm able to function in the day. I still don't drive, I still can't walk very far, but I'm not where I was. So it's, it's, it's a, it's a, it's a long road, a tough road, but with, you know, Katie's support, it's, it's been an easier road for me than it would have been.

Clare: Thank you, Katie. And thank you, Corinne. And thank you everyone for listening today. I'm Claire Ogden, and this has been Learn About ME Occupational Therapy Podcast. I'd like to thank our project partners, Emmy Action Scotland, and the Emmy Association for their support in creating the podcast for this project and all of our listeners for taking the time to listen today.

This podcast was produced by Zoe Anderson. You can find out more about the work of action for emmy@actionforemmy.org.uk. You can find Emmy Action scotland@emmyaction.net and the Emmy association@emmyassociation.org.uk. You can also find us on Twitter, Facebook, LinkedIn, Instagram, and YouTube. Thank you for listening.

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