122 - Professor Louise Cummings - Research into Cognitive & Linguistic Difficulties in Long Covid

Episode 122 of the Long Covid Podcast welcomes back the wonderful Professor Louise Cummings to talk about her follow-up study into the cognitive & linguistic difficulties in adults with Long Covid and also looking at employment outcomes for those people.

This is a hugely enlightening discussion, covering a lot of information - I hope you enjoy it as much as I did.

My previous episode with Louise: Episode 18 with more details about Louise's original study

Testimonials:
Samantha Berry, 52 years old:
https://drive.google.com/file/d/1EFP3EKgWKhQqKTK8TmWcI9vZldu-jlkm/view?usp=drivesdk

Neal Sandwell, 53 years old:
https://drive.google.com/file/d/1uhxujOe6Do5pVfDoWufmZeympGy4TMwU/view?usp=drivesdk

Sarah Thomas-West, 51 years old:
https://drive.google.com/file/d/1b0AYoR4pjqFAMsLmeZgEZMWLKOQWMVq8/view?usp=drivesdk

Publications:

Original study:
https://www.taylorfrancis.com/chapters/oa-edit/10.4324/9781003257318-5/cognitive-linguistic-difficulties-adults-long-covid-louise-cummings?context=ubx&refId=9d0f2ed6-b33d-4696-9ab4-cc323f95ff0e

Follow-up study:
https://www.sciencedirect.com/science/article/pii/S2949903823000325

For more information about Long Covid Breathing courses & workshops, please check out LongCovidBreathing.com

(music credit - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  
Hello, and welcome to this episode of the long COVID Podcast. I am absolutely delighted to welcome back Professor Louise Cummings. We spoke just over two years ago, as it turns out, I was looking earlier and I could not believe how long it was -about Louise's research into cognitive and linguistic difficulties and people with long COVID. I hope I got that right. 

And she has been continuing with this research and doing all sorts of other amazing things. So we're going to take a bit of a dive into all of that today. So a very warm welcome back to the podcast, Louise.

Louise Cummings  
Thank you very much, Jackie, it's lovely to be with you for a second time.

Jackie Baxter  
Yeah, it's been amazing catching up with you as well. So to start with, would you mind just giving a very brief kind of introduction to what it is that you do, before we start diving into the research side of it?

Louise Cummings  
Okay, so my research and teaching areas at the Hong Kong Polytechnic University are clinical linguistics and communication disorders. So my background is actually in speech language pathology. So I'm interested in how language, speech, communication break down in people with a range of medical problems. 

And quite early on in the pandemic, around October 2020, I became aware that a significant number of people were not making a good recovery from their COVID infection. And at that point, I started to collect a lot of data. And I've really been working on long COVID ever since then. 

So I'm here today primarily to talk about the follow up study that I did to the initial study, which was featured in our first podcast together.

Jackie Baxter  
Fantastic. Thanks very much. And I will drop a link to that first episode. I think it's 16 or 18, I think. So it's right back at the start. So that one's really, really interesting. And that will give you a load more information on the original study. And, as well, the results from the original study as well, which we were able to share at the time, certainly some of those results, which was really exciting to hear. 

So maybe you would give just a sort of brief recap of that study. And you know, folk can go back and listen to the episode for more details of that. But yeah, maybe just a kind of quick overview would be good. 

Louise Cummings  
So I mean, the initial study it had, there were six groups in the design of the study. We'll concentrate on just two of those six groups, because those are the groups that are most relevant to the follow up piece of work that I did. So in the initial study Jackie, and I examined 69 People who had COVID infection, and at that stage were reporting that they weren't making a good recovery. 

And there was also a healthy adult group there, 26 healthy participants, so all the participants in the study, and across all the six groups, they undertook a series of 12 language tasks. And these were obviously recorded online because this was at the height of the pandemic. And what I found very clearly was that people with long COVID, our 69 participants with long COVID, they were really struggling quite significantly on seven of those 12 language tasks. 

So I'll just recap what the areas of difficulty were. So people with long COVID were struggling with both immediate and delayed verbal recall. One of the tasks that I get them to do was a picture description task. So I showed them a scene. It's called the cookie theft, picture description task. And they struggled to produce an informative description of that particular scene. 

And then I also give the participants two other discourse production tasks. One is where they were telling a story based on a sequence of six pictures. And another is where they were recounting a fictional narrative. On both of those discourse production tasks, performance in those were reduced as well. 

And then there were two fluency tasks; a letter fluency task and a category fluency task where participants with long COVID were struggling also. So there were seven of the 12 tasks where people with long COVID were really having considerable difficulty relative to the healthy participants in the study. 

Jackie Baxter  
Yeah, I think if I remember correctly, the areas where they struggled more was using certain, now see if I can get the terminology right. And I probably won't, that certain different parts of the brain and different sort of elements of speech and language I suppose that required more different parts of the brain working together - was that anything close to up to what you found?

Louise Cummings  
Yes, kind of. I mean, the discourse production tasks which featured heavily in the study. So I was examining the informativeness of speakers discourse; how much information participants were able to convey through language. And the adults with long COVID tended to produce less informative discourse. 

Now that can occur for a range of reasons - there might be memory deficits, which mean they couldn't remember certain bits of information to relate on a story, for example. Or they were maybe struggling with a group of cognitive skills called executive functions, which allowed them to organize and plan a narrative. 

So telling a story is, you know, people think stories, because you tell them to young children, that they're a cognitively simple task, they're actually quite complex. Because you know, to narrate a story, you've got to not just think about what needs to be said. But you've got to think about the order or sequence in which you say things. So the sequencing, the planning, the organization of narratives was also compromised in the adults with long COVID. 

So we, you know, we can think about the different types of cognitive skills that make those linguistic activities possible. But they certainly suggest at a significant level of cognitive compromise in the adults with long COVID in the study

Jackie Baxter  
right, so it was the tasks where there was more going on, I suppose, to put it in to more layman's terms. 

Louise Cummings  
Yes, it's where you have to be able to retain information, sequence and order information, and present information in a way to a listener, whereby they can follow a story. So when you introduce maybe a character in the story, do you then make subsequent reference to that character in the story through appropriate pronouns, for example? 

And those sorts of higher level cognitive skills were particularly compromised in the adults with long COVID. They found those higher level tasks more difficult to perform? 

Jackie Baxter  
Yes, absolutely. And I think for a lot of the participants, this was the first time that someone had said to them, here is an actual evidence of something that isn't working for you. So you know, your bloods are fine, your cardiac whatsit's fine, your lung scans, fine. All of the other tests that have been done on you, they're all coming back normal, so you're absolutely fine. 

But actually, here in this study, in this testing that you did with them, there is something coming back here abnormal. So I think that sense of validation that people got from this, I think, was quite important for them. I think.

Louise Cummings  
Yes I mean, that in the sort of around October 2020, people knew. People knew they were not making a good recovery. But they were going through all the sort of standard medical tests, they were having bloods taken, they were having MRI scans, they were having, you know, chest X rays. And every single test was coming back perfectly normal, no problem at all. But they knew they were unwell, and that they weren't able to function. 

And I think you're right, I think it was particularly validating for people then to have something objective to show that they were struggling with tasks, which, you know, given the sort of educational background of these individuals and their occupational roles, we can safely assume they would have had no difficulty with whatsoever prior to their COVID infections. 

Jackie Baxter  
Yeah, definitely. I mean, I think it says something about the world in general, that people should need that validation. But nonetheless, that is the way that it appears to be unfortunately. So yeah, I think that was huge. 

So let's dive into the follow up study, and what kind of made you decide to do that? How did that come about? 

Louise Cummings  
Okay, so, you know, given that I'd established that there were these particular areas of language functioning that people with long COVID were really struggling with, I wanted to know where these difficulties persisting over time. Or were they with further physical recovery from the infection, were they beginning to resolve spontaneously. So that was one of the primary reasons I did a six month follow up study. 

So we needed to know what was going to happen with these difficulties, were they going to be quite resistant to change and still evident six months on from the first study? Or were they going to improve spontaneously. So that was one of the reasons for the study. 

But then I also wanted to examine the employment impact of these difficulties, because none of the people I was working with about stage you know, in 2020, 2021. They have not been able to return to work, and I wanted to see what was the role that these cognitive linguistic difficulties were having in their employment, on their ability to return to work. So those were the two main reasons why I decided to do the six month follow up study. 

Jackie Baxter  
Yeah, absolutely. Because I think, again, it's gonna vary for all sorts of people. But, you know, if you are unable to function cognitively, it is going to affect - Well, it's going to affect every aspect of your life in the same way that the other, you know, symptoms of long COVID is going to impact every aspect of your life. 

But again, you know, I mean, anecdotally, you know, that there were people talking about not being able to drive even short distances, because it was dangerous for them to be doing so which, you know, means that their ability to care for children, to get to medical appointments, to do all of these things that I guess people completely take for granted, suddenly, you can't do any of these things, and you're even more reliant on other people to help. And some people have another person, and some people don't. And even those who do, it's still putting a lot on to that kind of support system, isn't it? So I think it can be underestimated. 

Louise Cummings  
And you know, a lot of the lessons in my study, Jackie, these were, you know, high functioning professional people before their infections. These were people working in health care roles, working in education. And you know, these are demanding professional roles, where you've really got to be firing on all cylinders to be able to perform your duties in these particular roles. So, you know, even a small degree of cognitive slippage for those individuals was having actually a devastating impact on them and their ability to return to work.

Jackie Baxter  
Yeah, definitely. So let's talk about the study. I'm just gonna ask the really wide open question, how does it work? What did you do? 

Louise Cummings  
Okay, so the initial study had 69 long COVID participants. And what I did was I returned to those participants, and basically said, look, Are you willing and able, six months after the first study, to take part in a follow up study? 

Now, some people were, you know, they simply were maybe too unwell to participate in the follow up study, or for timing purposes, they weren't able to meet the six month mark. So as long as people were willing and available to participate, they could take part. So out of the original 69, I was able to get 41 adults who were able to participate in the follow up study. 

And are used again, the healthy control group, 26 healthy adults. But there was a problem here. This study was obviously being conducted at a time when there was a high prevalence of COVID infections. So out of my original 26 healthy participants, 15 of those people have gone on to develop COVID between the first and the second study, so I couldn't obviously use them in the follow up study. So what I did was I find education and gender matched individuals to take their place in the healthy control group. 

So there were 41 COVID adults, 26 healthy adults that had not had COVID, or at least not tested positive for COVID at any point. And I basically went through the 12 language tasks again. Now, there were improvements. Okay, so we'll start with the two areas of ongoing difficulty, the verbal recall was still particularly difficult for the adults with long COVID. So both immediate and delayed verbal recall, there was still a significant difference between the COVID participants and the healthy adults. So that was an ongoing area of struggle for the adults with long COVID in the follow up study. 

Now on all the other language tasks, the COVID participants were performing similarly to the healthy adults. So there was some evidence of improvement there, even though verbal recall was still quite compromised for the adults with long COVID. But against that sort of backdrop, as a general finding, there were still a lot of individual performances amongst the participants with long COVID which were sort of troublesome and problematic. 

So for example, on a confrontation naming task where I would show people pictures and ask them to name the pictures, you know, you can name the picture, but it might take you a while, you might go via a very long circuitous route. And what I was finding was although they were maybe able to get very high scores on that confrontation naming task, there was considerable cognitive struggle in getting to the target word. 

So that was, you know, that was a problem, you know, just getting the score in itself is not much good if there's considerable cognitive struggle in getting to that point. So even though they were able to hit the scores that were similar to the healthy adults in the study, there was still very marked cognitive struggle on the part of the adults with long COVID. There was a lot of what I call cognitive inefficiency, they couldn't just see a picture, you know, access their mental lexicon and pull out the words to name my picture. It was a laborious, effortful process for them. 

Jackie Baxter  
Yeah, and this isn't just the kind of, Oh, it's on the tip of my tongue, I can't remember that thing, you know, this is much more than that, I take it? 

Louise Cummings  
It is, it is. And, you know, it was maybe happening on every single item in the test. So you know, they may have named 19 of the 20 items correctly. But you know, maybe on 15 of those items, they were really evidencing a lot of struggle to get the target word. So you know, that's not normal naming, even though they were able to hit a fairly high level or high score on a task like that. 

Jackie Baxter  
Yeah, and this is interesting, because if we kind of take a look at sort of more physical stuff, just as an example, you know, you get things, the PIP assessment, so sort of disability benefits, and those sorts of things. The sorts of questions that they tend to ask, you know, Can you walk 50 meters, or whatever it is that they ask. 

And that's not really the question they should be asking, you know, a person might be able to walk 50 meters, but it might take them an hour, and put them in bed for a week as a result of it. So yes, they can, but actually No, they can't really. And, you know, what you're sort of saying is that in terms of test scores, you know, they may be scoring virtually the same. But that's not the full story. 

And looking at those other factors are as important, I think, you know, because, yeah, you know, if you compare two people, and one can tell you, Oh, that's a picture of a rabbit. And someone else is gonna take 10 minutes to tell you it's a picture of a rabbit, those two scores may look the same on paper, but they're absolutely not.

Louise Cummings  
Exactly. So it's not just getting the end result, it's the route that you take to the end result. And that route was laboured and difficult for many of the adults with long COVID. So they were getting the score, but their performance was still not what you would describe as a sort of normal naming performance, for example.

Jackie Baxter  
Yeah. But it is also interesting that a lot of things had improved. So that's obviously positive as well, you know, it's a positive to take from it, isn't it? 

Louise Cummings  
Yes, we mustn't overlook the fact. And that's, you know, that improvement occurred, despite the fact you know, these adults were not receiving rehabilitation. They weren't receiving any type of speech and language therapy, for example. So there was some degree of spontaneous improvement there. There's no doubt about that. But it still at six months, was not what you would call a sort of normal performance, these individuals had certainly not returned to their pre COVID state.

Jackie Baxter  
Yeah. I don't know if this is something you actually noted in the study or not. But I'm curious, you know, you said that they've not been receiving, you know, any meaningful health care. 

But were there things that they were doing aside to that - I'm thinking the sort of things that people are able to do themselves? Like, you know, doing things like meditation and breathing and improving diet, and, you know, all of these things that a lot of people have seen a lot of help from? Was there any element of that, that you know of?

Louise Cummings  
I mean, I think sort of every individual was doing his or her own thing to try and improve their symptoms. I think that was inevitable, you know, some people were pacing very well, other people were trying vitamins. Other people were maybe using sort of brain training apps. So everybody was doing his or her own thing as a means of trying to improve their symptoms, but they didn't receive any sort of formal intervention. That's what I mean.

Jackie Baxter  
Yeah. Which is kind of shocking in itself, isn't it, really? 

Louise Cummings  
Yeah. Well, it's been a period in healthcare where resources have been completely overwhelmed by the demand, where people have just not been able to get quite often the treatments and the interventions that they need. 

Jackie Baxter  
Yeah. And people have been kind of hacking their way through it with well varying degrees of success, I suppose. So yeah, that's really interesting about the kind of results of that. And is that one of the links you've given me, isn't it?

Louise Cummings  
It is, I've given you the link to the study. So I mean, it sets out the results in detail, but then there were also the employment outcomes in the study. And I think that's, you know, that was the second key objective in the study. So I think it's worth taking a look at some data for employment for the individuals in the study as well. 

So I mean, let's think about when this six month follow up study was conducted, the participants in the six month study were on average 21 months after the onset of their COVID infection. So we're talking about nearly two years on from the onset of their COVID infection. 

So what I did was I charted what was happening to them in terms of employment, so how many people were in employment before they developed COVID-19. And how many of them had been able to get back into employment by the stage of the follow up study. So prior to their COVID infections, of the 41 adults, 37 were in employment, so 37 of the 41 were employed before their COVID-19 infection. 

At the six month follow up study, only one of those 37 people had been able to return to what I'm calling their full, pre COVID occupational role. So their exact job, the exact job, the exact role they were doing prior to their COVID infection, so just one of 37. So this is a very poor outcome really in terms of employment. 

Now, even the one who had returned, that was actually the youngest participant in the study. She was an 18 year old student in full time education. And even she, a month after her follow up assessment, even she had to drop down to part time education. So really by the six month follow up study, Jackie, the employment outcomes were not good at all, for these individuals. Effectively, none of the people who have been in employment prior to COVID have been able to get back into the workplace. 

So I then investigated, well, if you haven't been able to return to your full pre COVID occupational role, have you been able to return to any employment at all, even sort of part time. And 11 of the 36 had been able to get back into some form of employment. So this was obviously reduced hours, maybe a less demanding role. So it wasn't their full pre COVID employment role, but it was at least some form of employment. So that was 11 of 36. 

And unfortunately 25 had no employment whatsoever. And you know, some of them, seven of them went on to get ill health, retirement. 12 are living off Social Security benefits. So the picture on the whole was not particularly encouraging, in terms of employment, that people so far on from the point of their initial infection, were still not able to return to full time employment or whatever occupational role they undertook prior to becoming unwell.

Jackie Baxter  
Yeah, again, you know, anecdotally, you hear about a lot of people attempting to return to work and maybe sustaining it for a short period of time, and then, you know, hitting a relapse, and that being a problem or just not being able to sustain it. 

Do you know if the people that weren't working at all had been able to sort of try any returns to work and it hadn't worked out? Or had they just not been in a position where they were able to actually try at all? 

Louise Cummings  
They literally were unable to try. I mean, they were just so, so unwell, that they were unable to return. No, we can look at the factors that you know, maybe played a role in that. But those people who were not able at the six month follow up study to get back into work had literally not been able to even attempt to return to work, they were still really quite unwell at that stage. 

Jackie Baxter  
Yeah. And I guess you know, this is something that will differ person to person and job to job, role to role, depending on what their support systems at home may be like, as well. And, and things you know, if somebody had a supportive partner at home, for example, then that might make them more able to be able to do some hours. Whereas if they were having to do everything for themselves at home, then it's, you know, much more difficult for them to also then be able to do something else. You know, again, this comes back to the sort of pacing and things doesn't it? That you know, until you become unwell with something like this, you're not really aware of how exhausting chores at home are.

Louise Cummings  
Something that was very apparent to me was that even as physical symptoms were improving, so they'd maybe recovered from their breathlessness, or they'd maybe recovered from their palpitations. I think actually, the cognitive issues were the things that were keeping most of them out of the workplace. Those seem to be particularly persistent and they don't seem to resolve so quickly. So, you know, the physical symptoms may have settled down to a large extent. But they were still struggling with the cognitive demands of their role. 

And, you know, they just knew, for example, you know, a healthcare worker or a nurse, a neonatal nurse, for example, said, there's absolutely no way I can return to the ward. I mean, and do the sort of multitasking that I would have been doing in my role before. So it was the cognitive demands of the role, which tended to prevent them getting back in.

Jackie Baxter  
Yeah, of course. And I guess, you know, using your example of a nurse, you know, there's obviously a huge cognitive demand to use their knowledge and all of these things that that job entails. But I would imagine, there's also quite a sort of hefty physical component of, you know, just physically being on your feet all day and walking around a health care center or a hospital or a surgery or wherever it is. So it's kind of putting the two together, isn't it? It's not just one or the other, it's both at the same time, which is probably going to make it even more difficult. 

I mean, again, I suppose, you know, I was quite fortunate in some ways that I didn't have the cognitive issues on such a level as it sounds like many of your participants did. And that I noticed that they were worst, when I was physically overdoing it as well. So I don't know if that's something that you noticed or measured, the sort of physical symptoms made the cognitive worse. Or, you know, and then, you know, you just said that the cognitive seemed to outlast the physical, certainly, in some ways. So that's obviously not the full story. But I am curious. 

Louise Cummings  
Yeah. I mean, I think the physical symptoms and the cognitive issues, there's a complex relationship between the two. And I do think that as the physical symptoms have improved, there have been improvements in the cognitive issues. But it's very clear to me now that there are quite strong, persistent cognitive issues remaining, even when a lot of the physical aspects are beginning to settle down.

Jackie Baxter  
Yeah. So I'd be curious, I mean, you talked about how some of the people that you had in your study were able to return, not to their previous roles, but to some form of employment. I think in the UK, we call things like, you know, reasonable adjustments. So being able to go down to reduced hours, changing your role, having an office that's closer to the door, working from home. 

So what have you kind of discovered through those people that has been the most helpful for people returning to work? And I suppose the flip side of that as well, what were the things that stopped them from returning to work, that sort of hindered it, I suppose? 

Louise Cummings  
Well, I mean, in terms of the 41 adults in this study, there were really four main factors that facilitate our return to work. So phased returns. Now, the standard phased return, you know, your sort of four or your six week phased returned is not working well for adults with long COVID. So where a phased return can extend over a period of months, you know, that really can make a considerable difference. 

So let me just quote to you here, a 47 year old woman who participated in the study. She said, "what I've learned is that increases in work duties, and time spent in work have to happen very slowly. And they need to time each time to adjust to the new level of demand." 

So we can't sort of ratchet up the work demand quickly with a condition like long COVID, the adjustments need to be very small and over a much more extended period of time. So the people who were able to get back into work were the people where, they were given much more freedom in terms of the duration of a phased return. So it went, it extended over many more weeks than the standard phased return. 

Some of the participants also had a change of role. So you know, the people, the healthcare staff particularly, you know, they were in prior to their their COVID illness, they were in demanding sort of patient facing roles. Some of them were taken away from those patient facing roles, and were given other roles where they weren't in contact with patients. 

And having that change of rule made a difference as well. And maybe in a role where there were fewer communicative demands, so you know, that you maybe didn't have to have a lot of conversations on the phone, or a role where you could sort of be behind the scenes and quietly working away without having to interact and communicate with a lot of people. So changing the role, the phased return was important. 

The adjustments as well are important. So you know working from home, even if it's just for a couple of days a week, it makes a huge difference to someone. So maybe if they can be in work on a Monday, and you know, maybe then working from home on a Tuesday, maybe if they've got the Wednesday off. That sort of pattern makes it much easier for people to get back into the workplace. 

So working from home, reducing your hours, obviously, the flexibility to reduce hours and, you know, build them up when you think you can cope with an increase. And then there's a whole range of sort of adaptations. So adaptations to computers, for example. Somebody reported that they had several adjustments, so they were given less responsibilities and work, they were also given mobility scooter to use. And these adjustments made a vast difference to their ability to perform at work. 

And then the final factor, Jackie, which was very important is having strong occupational health support. So you know, if you've got a strong occupational health worker or consultant in your corner, able to advocate for you with an employer, and be able to say, Look, these are the adjustments that will work, or these are the things that you could do, which would make a return to work easier for this individual. That can make a huge difference, as well. 

So these all sound like very simple things. But you know, they are really not being implemented very often. I mean, it's actually quite unusual for people to get employers making lots of adjustments and changes, you know. The attitude quite often is, well, you know, we need you here, we need your functioning 100%, we need 100% of the time. And if you're not able to do that, we can't accommodate you. 

But actually, you know, you're losing an awful lot of experienced staff, a lot of talented individuals, by just not being a bit more flexible and willing to try and work around these difficulties. And for the employers who are willing to do that, you get the reward in that the individual is able to be reintegrated into the workforce. 

So, you know, we need to do, I think a bit of a head shift on how we're treating people with long COVID. And, you know, if we want to see them back in the workforce, which clearly we do, because they form such a large number of people, we need to be better at making accommodations. 

So those are the things that really helped people. If we're thinking about the barriers or the things that hindered individuals. Well it was really a lack of flexibility and willingness to explore a range of work patterns. So people that have maybe been able to work perfectly well with a couple of days working from home, you know, employers would then say, well, you know, you're no longer allowed to work from home. 

Well, you know, come on, if they were able to work from home before quite effectively, why did that need to change? That particular work pattern didn't really need to change. So you know, be accommodating and willing to adopt the range of work patterns. 

So also, there were human resources departments, there were quite a number of individuals were having very stressful face to face meetings with human resources. And unfortunately, a number of those interactions were conducted a bit insensitively, and were unhelpful. And I've always say that even after, you know, the individual, maybe makes recovery or does end up back in the workplace, the thing they will not forget is the insensitive interaction that they'd maybe had in a meeting with HR professionals. 

So that has caused a lot of distress to people who are already in considerable distress with their condition. So, you know, we need to think about those sorts of HR encounters as well. 

Redeployments that were maybe not feasible for the individual with long COVID. So, you know, we're going to give you a redeployment, but they didn't really think about what the individual was saying they could and couldn't cope with. So, you know, a redeployment that wasn't feasible for the individual just simply escalated stress for them. 

And unfortunately, quite a number of the individuals with long COVID were working under threats of dismissal if they didn't get back to work. Now that is acutely stressful on someone who's trying to recover from a chronic illness. 

So I'll give you an example here of a 59 year old woman in the study. She said "I returned to work, or else was heading for dismissal due to ill health. I returned and worked to stay within my job description, but was told I could have no reasonable adjustments or phased return. I negotiated comfort breaks and time off for medical appointments." And she says "I was ill every day I was in work." Well, you know, that's a miserable situation for any employee to find themselves in. 

Jackie Baxter  
And, yeah, this is really interesting. And I think that you know, that there are lessons that we've learned over the last three and some years, you know. I'm not going to say everybody, because there are some jobs that cannot be done remotely. But there are so many, I would even say the majority, possibly, of jobs can be done, at least in some form, in a remote or hybrid, flexible kind of way. 

And that is evidenced by what happened in March 2020, where suddenly, it was like, you woke up one morning and you're like, okay, no one goes to work anymore. Okay, I'm going to work from home in my pajamas. You know, and, there are people that that didn't work very well for, you know, which is, I suppose, why it's important that people are able to go and work physically in their office or their place of work. 

But at the same time, there are very many people who it did work better for to be working flexibly, be that because of illness, and that's not just long COVID. There are plenty of people who were ill with chronic conditions that, you know, predate COVID, that actually flexible working would have made a massive difference for. And this whole situation proved that that was possible. So it should be able to be continued for those people. 

But, you know, for other reasons, as well, you know, people who aren't able to get child care and stuff, you know, if they were able to work flexibly, then actually they would be able to do their job, look after their children and be less stressed, which has got to be a win for everybody, right. So it's kind of like, you know, we've proved that it can be done, everybody is so desperate to return to normal, whatever normal is, that actually, we're kind of overlooking some of, I don't know, if, you know, some of the benefits, some of the things that we have learned. 

It was a horrible experience, but surely, there's got to be some learning to come out of this, and some kind of way forward, that, you know, that is better for those people. So that's really, really interesting. 

But I think your point about the interactions with people at work, and how stressful they can be. Being chronically unwell is inherently stressful, you know, it is incredibly stressful, because you've lost your physical health, you've possibly lost your cognitive ability to do stuff. So your mental health is probably down the toilet, you know, you're struggling with relationships, you're constantly having to rely on other people, and some people don't have those other people. 

And then you're under stress from work, you know, you're either trying to work and struggling, or you're, you know, under threat of dismissal, or you're just worrying about the fact that you can't get back to work, and you're not going to have any income, which is not ideal. So there's a huge amount of stress here. 

And I think, you know, this surely is something that everybody should have, is a bit more empathy, whether you're having a meeting with HR, because you want to change your hours because you have a sick child, or whether you are having a meeting with HR and your boss, because you are chronically unwell, and you're trying to work out how you might be able to return to work and what that looks like, you know. 

It's that there needs to be a level of empathy and understanding and sort of listening, understanding, you know, asking questions, but kind of gently, curiously, rather than with this kind of blame. Because I think you're right, you know, if somebody is experiencing all of this stress, and then they think, Okay, well, maybe there could be a way for me to return to work. I would really like to. I need to, but it's got to be in a way that works for me. 

And then you come up against a boss and an HR department that basically sits there and, you know, you feel like they're accusing you of things or, you know, forcing you to do things that you're not able to do or just just being generally inflexible. I think the way - it's not just what people say, it's the way they say it, that can be very, very important. I think. So yeah, I think that's a really big point.

Louise Cummings  
Yeah, if your listeners access the testimonials in the show notes to the podcast, you know, you can hear firsthand accounts there of just how difficult some of these workplace interactions have been. And the damage that was done when people are not dealt with sensitively in the workplace. Because it is significant and it adds a terrible stress to people who are already very unwell and stressed with their condition. 

Jackie Baxter  
Yeah. Which is in itself going to hinder recovery, isn't it? I imagine if somebody has a stressful HR meeting, and maybe they do manage to hash out something that they are able to do some sort of return to work. That return to work is going to be far more stressful and far, you know, less conducive to good health and recovery, if they've got that hanging over their head, that that was a really nasty meeting, and that they're kind of they're under duress, almost, you know, that's going to make a bad situation worse, isn't it? 

And I guess we put a lot on employers, and they can be made out to be the bad guys in all of this, and, you know, for sure, some of them are, you know. Maybe even quite a lot of them are. But I think maybe there's something in here about education as well, you know, because I mean, I've definitely noticed this myself over the last few years, that I think I have a level of empathy that I didn't before, because I understand, on some level, what it feels like to be these people, you know, I know what it feels like to be so physically unwell, so struggling mentally, to not be able to work all of these things. 

So I understand that, whereas I like to think I would have been empathetic before but I certainly wouldn't have understood. So, you know, I think education for employers, for HR departments, you know, not in a kind of patronizing way, just in a kind of, how can we do better? How can we be better to these people who are struggling for whatever reason? 

Because that's going to be better for everybody, you know, it's going to make a better place for people to work, you know, more people are going to be able to return to work. And as you said earlier, you know, less of that loss of experience, because just because these people are unwell doesn't mean that they're useless. It just means that they're not able to do exactly the same thing that they were before, at the moment. So we don't want to lose them.

Louise Cummings  
And I mean, many of these issues have already been historically experienced by people with chronic fatigue syndrome. So you know, people with other chronic conditions, chronic illnesses, have encountered these types of workplace interactions. And the long COVID people are now seeing firsthand what this is like. 

So yes, I think there needs to be better efforts at educating employers about the potential that these individuals have, if there can be a degree of flexibility to try and work them back into employment.

Jackie Baxter  
Yeah, yeah, definitely. So I mean, I think we've sort of just touched on this really, with what we've just been talking about. But are there sort of specific things that people with long COVID, or other chronic conditions, would sort of change about returning to work? And maybe the process or the things that they asked for? Or - I don't know, I mean, that's quite a wide open question, isn't it?

Louise Cummings  
I think it is just, it's about attitudes, and willingness to try and listen to what they're saying. And just try to be a bit more flexible. I know, it's very difficult for employers, you know, especially if you're maybe working in a highly stressed health environment, where you need to be able to rely on a certain number of trained staff to be available for employment. I do understand the pressures from the employer end. 

But I think if we could just be a bit more flexible, and think about what changes we can make. They don't need to be massive changes, they really don't need to be massive changes. A degree of small changes sometimes can make a huge amount of difference to the work experience of somebody. 

And I would say that that is sort of the overriding message from people with long COVID, certainly in my study, that our willingness to believe that what they're experiencing first of all is real, because of course a lot of it was dismissed as not proper illness, as it were. And not just a belief that it exists, but a willingness to accommodate and be a bit more flexible to allow work reentry. Those sorts of changes would make a huge difference to the employment outcomes of people with long COVID, I believe.

Jackie Baxter  
Yeah, and I think, you know, if we look at the - hopefully, you know, people are able to return to work in some form, and the employers are flexible and all of these things. But, you know, if there was someone who tried to return to work, and they had meetings with their boss, with their HR, and you know, these departments, they were willing to try, and they offered things and they discussed it with the person and they made an effort. 

And maybe it doesn't work, you know, maybe the person isn't able to return to their job. But I think it's gonna make a big difference to that person that they tried. You know, that then if they do end up leaving, that they leave knowing that their boss, that their employer really made an effort for them.

Louise Cummings  
Because we do have to be do have to recognize that some people, even with adjustments, will not be able to get back into work. And I think people can accept that as long as they can see that there has been some effort made to try and accommodate them. 

Whereas I think the experience too often is, there was no effort made. And people were just fairly quickly moved on to the point at which they were effectively removed from their posts. So, you know, people can accept that they can't get back into work if they are given some degree of accommodation, and there is a willingness to try and be flexible with them. 

Jackie Baxter  
Yeah, it comes back to the sort of the willingness, flexibility, people trying, making an effort, that empathy, I suppose, doesn't it, that can just, you know, the end result may not be any different, but everybody is going to feel a lot better about it. And I think that is big. I think. 

Cool, I feel like we've packed a ton in here. So what's next? Is there more plans for more studies, more research, morewrite ups? 

Louise Cummings  
Yeah. So I'm bringing to conclusion on quite a big study, actually, it's an international study, it has 4302 adults in it. So it was a survey conducted, obviously online. So these adults are from 62 countries. The survey could be completed in 21 different languages, because, you know, my previous work has obviously largely been with people in the UK, English speakers, people of white ethnicity of certain sort of educational background, so I wanted to try and open it out. 

This is obviously a huge - long COVID is a global public health problem affecting adults, children and adults, everywhere, absolutely everywhere. So I wanted to get a wider perspective, a global perspective on what was happening with language, communication, cognition. 

So this study, I'm at the stage of really writing it up, the data has been collected and it's being analyzed. And I'm at the point of writing it up. So I want to use this particular piece of work, Jackie, to find out if there are subtypes of brain fog. So you know, we've talked about these cognitive, linguistic difficulties, but these are really a constellation of different cognitive and language problems. 

And I want to see, do they sort of naturally coalesce into groups or subtypes, to see if there are maybe a subtype of brain fog where there's a predominance of language symptoms? Or is there a subtype of brain fog where there's a predominance of memory problems, things like that? So that's one of the issues I'm trying to address through this study. 

But also, I want to analyze in considerable detail, what is the exact association between different types of brain fog and the employment outcomes for people with long COVID? Because the follow up study, you know, while I did look at employment, we didn't, you know, look out at in any sort of statistically rigorous way. 

But the study that I'm currently working on now is doing that more rigorous statistical analysis, to see what is the exact role of brain fog in the employment outcomes for people with long COVID. So that will eventually be published. And I will make it available to you and your listeners, if you wish to have a copy of it.

Jackie Baxter  
Amazing yeah, that'd be lovely. So depending on when people are listening, that may be available. Well, thank you so much for joining me today. It's been amazing catching up, hearing what you've been up to, the results that you've got, testimonials from the people that you've been working with, as well, because you know, that lived experience input, I think is so, so valuable. 

So all the links that you've mentioned, and the recordings of the testimonials and things - that will all be in the links in the show notes if people want to follow that up. So yeah, thank you so much. Good luck with the analyzing of the writing up of the study. And maybe we can catch up again, at some point when you've got some results. That would be lovely. 

Louise Cummings  
Absolutely Jackie. Well, thank you very much, indeed. And I mean, if any of your listeners feel they want to contact me, you know, please do make my email address available at the University and I'm happy to receive correspondences from any of your listeners. 

Jackie Baxter  
Thankyou. 

Louise Cummings  
Thank you very much.

Transcribed by https://otter.ai