Living with long COVID: Part 2

Last week, newsGP published excerpts from an interview between Dr Fiona Mackintosh, who has been managing long COVID symptoms since February 2022, and Dr Ken McCroary, GP lead of the South Western Sydney COVID-19 Working Group.
 
Part two of the conversation deals with people’s perceptions of post-viral syndromes and symptoms, managing chronic fatigue, and how patients and clinicians should approach long COVID.
 
KM: We have other patients with chronic fatigue syndromes, post-viral symptoms, autoimmune conditions that live with chronic fatigue and that malaise, and the pain syndromes, all day, every day.
 
Now you have been on the other side of that experience, how would you comment on the understanding doctors and government decision-makers have about trying to live like that? Even in the community and those close to you, what sort of misunderstandings are out there?
 
FM: It’s difficult from a community perspective. I think initially what is difficult is that people see you at your best.
 
When I’m out socially or when I manage to get to the supermarket that is actually my best for the day. Right now, I sound quite good, but in an hour or two I may be resting in bed.
 
That is one perception, that people don’t see you at your worst all of the time, so it is that type of disease where it looks a bit more mysterious.
 
The other thing is that it is really time-consuming to manage. The guidance around pacing your activities and watching your fatigue levels is intensive, so making sure you don’t become tired means you have to monitor and catch yourself before you are tired and stop that activity.
 
So, 20 minutes of reading, stop; 10 minutes of exercise, stop, and have a rest to do some mindfulness; five minutes of washing up and then pause and sit down for 10 minutes; get up and finish five more minutes, then pause, then stop.
 
It’s a labour-intensive process to do that every day, monitoring your fatigue, so even that level is quite intense. We all don’t do it very well because sometimes our nature is to go at things and you push harder just to get a task finished and then, of course, you regret it the next day.
 
Those things are difficult. In a logistics sense, I think the difficulty with managing chronic fatigue is that we’ve never had fantastic guidelines around pacing.
 
It looks different for every person, so it has to be very individualised. The evidence is difficult to obtain as to what makes meaningful differences for everybody. That is probably the most difficult unless – and I see that with long COVID – people get the definitions and good information about what is going to treat their fatigue well and put those guidelines in place early.
 
We have spent 12 months sort of waiting for something to happen, with the post viral syndromes ongoing. I think they just never have been able to get that momentum of information, but hopefully this means there is going to be big boost in some good research.
 
KM: Living with chronic fatigue is absolutely exhausting, isn’t it?
 
FM: Just even having to manage it is exhausting, let alone the actual fatigue.
 
KM: Throughout your journey, what have you found most helpful and what have you found most challenging?
 
FM: Probably starting to do deep rest or mindfulness [activities]. That sort of meditation rest does work … deep breathing and taking that rest can give me a little spark in energy.
 
Five minutes before I need to do a computer task, I do deep breathing, take that rest and I have a much better focus and energy level. That’s been helpful.
 
I think learning a bit more about pacing has also been helpful. Breaking it down into the small daily tasks and planning where I can put my essential tasks in, if that makes sense.
 
I know I have a telephone interview this afternoon, so I will need to have a rest beforehand and then I will need to plan what I do afterwards. I’m very careful with my diary calendar for the week so I don’t overdo things.
 
Being able to plot my daily steps with a Fitbit really gives me an overall number so I know I’m not overdoing things.
 
What has been really hard is when you feel good not doing too much. I’m having a good day today so I might do two or three things rather than just one. And then you spend the next 48 hours regretting it.
 
Of course, your mood drops once you feel worse again, so you suffer for the next couple of days.
 
It’s about learning how to avoid the boom and the real busts and that’s not a natural thing for anyone, especially if you are used to being a fully employed mum and a busy person. It’s really hard not to do it.
 
KM: You mentioned the learning and the research you have done – what have you learnt from researching your own illness for a change?
 
FM: From long COVID, as a different possible pathogenesis, we know a little bit more about the immune system.
 
Seeing that change in my EBV [Epstein-Barr virus] serology, it’s actually quite common in a lot of people with long COVID. That vaccination seemed to reduce the after-effects of long COVID [was also interesting].
 
Maybe it would have been worse if I hadn’t had my three vaccines by the time I got sick. You know, the pathogenesis of micro emboli and things like that.
 
I’ve noticed my dad’s dementia got worse after his episode of long COVID, so we know a lot more about those other effects now. It’s good to have that understanding.
 
We certainly know more about tailoring or tailoring programs to patients’ symptoms – looking very much at the core symptoms and taking that really patient-centred approach: ‘Okay, what is important to you to make a difference to your function and your life at the moment until some of these symptoms improve?’
 
How can we really target those symptoms effectively and look at those self-help strategies to do that? And whether that is a mix of cognitive retraining or what I described with pacing, fatigue management, physiotherapy or speech therapy – or are all of those components being able to really target and individualise it for patients?


Dr Fiona Mackintosh believes finding a trusted GP is invaluable when trying to manage and treat long COVID.
 
KM: I am grateful you have joined us on our COVID working group. How’s that experience been for you after having not worked for so long?
 
FM: I’ve found it’s been really good again. I’m up to the level where 45–50 minutes is my attention span. I’m good up until that level then I feel myself fatiguing by the end of the hour … [but] I’m getting better at keeping that focus going.
 
I enjoy it, I think I have that unique perspective of being a patient and a clinician. I’m fascinated where this will go in the next few years, how we are going to manage, quite possibly, a surge of patients with long COVID, [and] how we can make general practice better and to have the resources to manage this effectively.
 
We really can. But I also think GPs are so burnt out from the last few years and it’s another big thing to tackle the information behind long COVID and what we can do to help our patients. That’s where I see it as being a really positive thing that I can do.
 
KM: What advice would you give to people living with long COVID?
 
FM: Go to your GP early and check in with them. Find a GP you trust and can talk to. Find that person, stick with them and then get them to help you work along that journey because I think that’s important to start with.
 
There are some good self-help resources out there, too. Your GP should have them as they are definitely in our HealthPathways [resources] in South Western Sydney; I have checked. Get onto those as early as possible, and then really believe it will improve.
 
But you have to slow down and not fight the process. It is frustrating – it’s immensely frustrating – but I found it easier when I slowed down and stopped myself rather than constantly being frustrated with it.
 
KM: What about advice for people like me and the rest of our GP colleagues who are managing patients with long COVID?
 
FM: GPs just need to be really confident in this diagnosis – we need to know it is real: it is easy to diagnose, there are positive symptoms and there are definite criteria we can use.
 
If it looks and smells like long COVID it probably is.
 
And start addressing the symptoms you see very specifically. Also ask patients what they need and what is it they are struggling with, because everyone’s symptoms are so varied. There are some specific tools you can use to help a person function.
 
KM: Having lived through this, do you reckon there has been much change in your internal philosophy, your goal-setting and that sort of thing?
 
FM: Definitely more self-care. You look at that differently when you’ve had something like this.
 
Just being much more acutely aware of limitations and not overdoing things, because I don’t think I’ve ever done that very well.
 
In terms of philosophy, I think I have a greater appreciation for patient care and talking about patient-centeredness. We don’t always understand it completely or have the time to get there, but we need to take the time to see what someone needs at that moment.
 
Everyone’s needs are different – sometimes I’ve needed insurance paperwork or sometimes it’s more about talking about how I’m going – and that has become a lot more obvious to me over the time.
 
KM: You mentioned previously the extra burden on family members and other changes in your life. I see people with this kind of fatigue who have illness guilt.
 
I think it’s unfair that people feel like this. You didn’t ask for chronic disease and you didn’t ask for long COVID. How do you think we can do better to help people going through these syndromes to not feel guilty?
 
FM: I’ve always thought this was a society problem.
 
For example, when we look at wellness culture, we’re told if we exercise properly, if we eat properly, if we don’t drink too much alcohol, if we do all the right things then we will never become unwell, we will never be sick.
 
Then, suddenly, something happens and we are unwell and we feel a level of guilt that we deserved this for some reason. I see that as being a problem with all diseases.
 
Unfortunately, illness and diseases do happen in our world. That’s a part of life and that’s what happens. There needs to be discussion about chronic illness and how it is another part of life, an unlucky event that has happened. But how do we manage and make the best of that?
 
I think all we can do is to keep talking about it. I don’t know if there are any other specific wisdoms I’ve got there.
 
KM: Just pressing you for wisdom once more to finish. We have a particular interest in wellbeing and burnout prevention and the stresses we are all under, what about some final words of advice to your colleagues about self-care.
 
FM: I was aware I was burning out at the time when I got COVID and, unfortunately, that was the whammy of being a female, over 50, burnt out and then COVID.
 
A healthcare worker should see all the risk factors – they start to add up – so I was certainly looking at that.
 
I think we have to be careful in general practice. We have to support each other, look at not being so isolated in our own practices and being able to share a bit more of the load between us, even if it’s just getting advice from colleagues or debriefing.
 
We have to put those self-care things into place: getting some exercise, eating, taking breaks, enjoying some sunshine, whatever it is that gives you those five minutes of relief from your day.
 
I’m a big user of mindfulness techniques and meditation. I know that’s not for everyone, but I find them extremely useful. They’ve been shown to be very helpful so I would say start there, if anything.
 
KM: You mentioned finding a good and consistent and continuous GP relationship as well.
 
FM: Absolutely, especially when you hear there have been a few media personalities who’ve talked about their long COVID symptoms, they’ve gone to five different doctors and shopped around and they’re still not getting answers.
 
You’ve got to have those relationships with one GP, and that really helps to give you that continuity and a good relationship. We know the outcomes are better, we know the relationships are good.
 
You need to choose one GP – a trusted person that you can see and who knows you.
 
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