In this episode the chair of Long Covid Physio, Darren Brown discusses the World Physiotherapy briefing paper on safe rehabilitation approaches for people living with Long COVID.
Today, Darren talks about his 15-month journey with Long Covid, the four key messages from the briefing paper, and the social determinants of health. What outcome does Darren hope to come from the paper?
Hear about the benefit that PTs can provide for patients with Long Covid, how the data presents Long Covid demographics, and get Darren’s advice to his younger self, all on today’s episode of The Healthy, Wealthy & Smart Podcast.
- “Before recommending physical activity as rehabilitation interventions for people living with Long COVID, individuals should be screened for post-exertional symptom exacerbation.”
- “If person-centred care is going to be a key pillar of rehabilitation, we must make sure that our patients feel safe to openly engage in rehabilitation with meaningful connections that are established.”
- “Everyone deserves to be heard, acknowledged, seen, and given the space to do that.”
- “Long Covid could be classified, for many people, as an invisible disability.”
- “What we know is that a grade exercise therapy program has been shown to cause harm in other populations of people that experience post-exertional malaise.”
- “As a profession, Physiotherapy has an unconscious bias, which is that the mantra “exercise is medicine” is within our bones, and as a profession it’s quite hard to hear that exercise can’t cure everything.”
- “Before we prescribe physical activity interventions, including exercise or sport, we need to exclude cardiac impairment.”
- “There is enough evidence to demonstrate that people who have had coronavirus, and people that are living with the long-term consequences (Long Covid), can have cardiac impairment.”
- “Covid-19 can cause interstitial pneumonias. With these, they can cause desaturation on exertion.”
- “Dysautonomias are actually being seen to be quite prevalent in many people post-virally, potentially, when they’re living with Long Covid.”
- “There are going to be some people where exercise will work for them, but we need to know who they are.”
- “We know that in different parts of the world, the people who are affected by acute coronavirus has been disproportionately people of different ethnic groups.”
- “We need to think about health inequalities in terms of the candidacy of people to access these services.”
- “The diversities of people bring out the strengths in others.”
- “Be proud in who you are, be accepting of who you are, and know that your diversity, your differences, your quirks, your geekiness, your things that make you unique, are going to truly make you unique when you’re older and give you advantages in terms of how you navigate life, society, and your job.”
More about Darren Brown
Darren Brown is a cis-gendered (pronouns he/him), gay, white man, of English and Irish heritage, living in London, UK. He is a clinical and academic Physiotherapist specialising in HIV, disability and rehabilitation.
Darren leads the HIV rehabilitation service at Chelsea and Westminster Hospital NHS Foundation Trust; Europe’s Largest HIV centre. He is the Vice-Chair of Rehabilitation in HIV Association (RHIVA), HIV/AIDS coordinator of World Physiotherapy subgroup IPT-HOPE, and steering committee member of Canada International HIV Rehabilitation Research Collaborative (CIHRRC).
Darren was awarded an NIHR funded Masters of Clinical Research (MRes) in 2019 and continues to conduct both quantitative and qualitative research about disability and rehabilitation among people living with HIV in the UK and internationally. Darren contributes to national and international programmes focusing on disability inclusion across all responses to HIV.
Darren contracted COVID-19 in March 2020 and continues to live with Long COVID. He is a patient advocate for Long COVID healthcare and research, calling for the greater involvement and meaningful engagement of people living with Long COVID in all responses to COVID-19.
Darren founded Long COVID Physio in November 2020, an international peer support, education, and advocacy group of physiotherapists living with Long COVID. He is also an invited expert contributing to World Health Organization Guideline Development Group on COVID-19.
Covid-19, Long Covid, Research, Data, Disability, Safety, Exercise, Activity, Rehabilitation, Physiotherapy, Symptoms, Healthy, Wealthy, Smart, Diversity, Inclusion, HIV, PT,
The Long Covid Briefing Paper: Long Covid Briefing Paper
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Read the full transcript here:
Speaker 1 (00:02):
Hey, Darren, welcome to the podcast. I’m thrilled to have you on today. Thanks so much.
Speaker 2 (00:07):
Hello. And thank you for having me. My
Speaker 1 (00:09):
Pleasure. So this month we are talking all about long COVID. So people living with the long COVID symptoms and also what long COVID is at least what we know now, what we know at this present time. But before we get into all of that, and before we talk about the the world physio therapy briefing paper nine, which we will have a link to in the podcast notes I would love for you to let the listeners know a little bit more about you and why you are part of that paper and, and part of this world.
Speaker 2 (00:48):
Yeah. So thank you very much for having me today. So my name is Darren brown. I’m a, cis-gendered gay white man. I’ve mixed English and Irish heritage. I live in London in the UK. Hence my accent for anyone that’s not where I am. I am both a clinical and an academic physiotherapist, and my background is in the area of HIV, disability, and rehabilitation, so specialized in that for a decade. So I’m kind of used to the chronic implications of viral diseases. And I also happen to be a person living with long COVID. So I contracted a coronavirus acutely in March, 2020. So as I sit here today, I’m of my 15th month after acute coronavirus and I am currently sitting here today in a really stable, good place with my long COVID I predominantly symptom free.
Speaker 2 (01:45):
However, it’s been a 15 month journey and it’s been a very episodic and up and down journey which I’ll be very happy to summarize for you if you thought that was useful. So I, as I said, I contracted coronavirus last year. I went back to work pretty quickly actually, and I ended up working full time for six months, switched, included being redeployed to various sectors, including intensive care in response to the pandemic. Had some ongoing symptoms, but in September last year I crashed. And I ended up being off work for two months and the crash lasted for about six months where at my most disabled I was bed bound and flat bound and walking with a walking stick. And my symptoms were multi-dimensional episodic and unpredictable in their nature with profound exhaustion, fatigue, brain fog I’ve had some respiratory symptoms.
Speaker 2 (02:37):
I’ve had cardiovascular symptoms. I’ve had urological symptoms are neurological symptoms and I’m under all of those physicians for investigation still. I then had my vaccination, my first dose in January. I got better. I returned back to work. And then I was getting so much better. I started to do a bit more and unfortunately I had second crash. But then I had my second vaccination felt a bit better. And I’ve been continuing that journey since. So yeah it’s been a very episodic journey but I’m also a co-founder of a group called long COVID physio. So long COVID physio was born out of the need for peer support amongst physiotherapists, living with long COVID, both in the UK and the United States, but now it’s evolved, it’s now a global peer support group that also provides education in the context of a long COVID disability and rehabilitation. And also acts as an on an advocacy level which kind of brings us round to where the briefing paper came in really. Because it was born out of a need for education and advocacy led by people living with long COVID.
Speaker 1 (03:54):
And you know, I think we spoke about this before we started recording, but your background working with HIV that has multi-system whole systemic bodily implications, you said, well, with these, the code, the symptoms of long COVID, you weren’t, it wasn’t like out of the blue, it wasn’t a huge surprise for you, but is it safe to say it was a huge surprise to a lot of other people in healthcare and out?
Speaker 2 (04:26):
So in the context of HIV, we know that HIV can be controlled with medicines antiretroviral therapy. And when a person is undetectable, meaning you can’t detect the virus in the blood because the medicines are working that well, people are on transmittable, meaning you can’t pass it on. And when people are undetectable and they’ve been taking the medicines, people can live a normal life expectancy. But what we know with that is that people are growing older with HIV and the developing other complications and people living with well controlled HIV, still experience issues, including episodic disability. So when this pandemic came out, there was quite a few of us at work in the world of HIV, disability, and rehab that were kind of anticipating well, if people recover, there may be a risk that people will develop long-term consequences. So it wasn’t surprising. I think what was surprising was that I was one of them and actually how severe the disability was.
Speaker 2 (05:19):
There are other groups of people that also were anticipating a post viral manifestation, particularly groups of people living with Emmy or my LJ can. And my lightest also known as chronic fatigue syndrome. And other people that have been living with post viral complications probably were anticipating there was going to be some form of complications after acute Corona virus. But I think mostly the world has been caught off guard by this. And maybe it hasn’t been prepared for the critical mass of people globally that are going to be living with ongoing consequences after acute coronavirus, which is now commonly referred to as long COVID.
Speaker 1 (06:00):
Yes. And so now I think that leads us right into the briefing paper. So like I said, there’ll be a link to this in the podcast notes, but when you look at this briefing paper, there are a lot of contributors to this. So before we get into the meat of the paper, can you give can you explain how you got all of these people together in order to write this paper?
Speaker 2 (06:22):
Yeah. So this brief briefing paper was specifically brought together communities of people from different experiences. So the idea started with myself and a few other people that had expressed some concerns that maybe there was lacking guidance and policies and standards around the utilization of physical activity, witching of all types, including exercise and sports in the rehabilitation of people who may have been recovering from coronavirus or living with long COVID. And so initial conversations were between some people that had already connected pretty much through social media. And when we got the kind of green light with world physiotherapy, that this might be something that we could work towards. We started to snowball our collective groups. It, this, this briefing paper is brought together over 50 different people from different geographical regions in the world, so that all of the five corners of the global four, four corners, but, you know, five weld, physiotherapy regions have been represented here.
Speaker 2 (07:29):
So we’ve got people from Europe, north America, south America. We’ve got people from Africa, Asia, and Asia specific. So we, we have huge diversity, not only in where people are from, but also in that backgrounds. We’ve got people living with long COVID. We’ve got physiotherapists, we’ve got physicians, doctors that specialize in a range of different things, including physical and medical rehabilitation. Also known as physiatrists. We’ve got occupational therapists, psychologists. We’ve got people living with M E the list goes on and we’ve got such diversity because what was needed was a consensus here. What was needed was a diversity of thought experience, both lived clinical and academic, but also geographical to come together to say non COVID is not just affecting one place in the world. And this experience is not singular to two groups of people or people in certain locations. This is actually a unifying global issue and the long-term consequences after acute coronavirus and affect people around the world. And that’s why it was so important that we have that diversity, if the people that were contributing, but also diversity of experiences and thoughts, because not everybody comes from the same background with the same beliefs about all of this. And so we needed to bring that consensus together. And that’s how we was able to develop the paper, though. It was not only recommending caution, but was also what can be done and also where rehabilitation is successful.
Speaker 1 (09:00):
Yeah. And I think, you know, for a whole systemic disease, that COVID is, and it being global, it is important to have a whole systemic group of people working on this. So I just wanted the listeners to know it’s not only physical therapists or it’s not only physicians, if this was a real collaborative world effort. So that being said, let’s talk about what some of those key messages are, especially when it comes to safe rehabilitation of people with long COVID. So I’ll hand it over to you.
Speaker 2 (09:33):
Yeah. So the, the way the briefing paper was written was to introduce T considerations when rehabilitation specific to physical activity in all of its forms. As I said, including exercise and sports, when those key considerations need to be taken from a safety perspective before we prescribe exercise and physical activity. And I purposeful in my terminology there because we are health professionals that do prescribe our interventions. And so therefore we do need to have safety at the core of what we do. We know that there is currently not enough evidence or any evidence on the safety and effectiveness of physical activity and exercises and intervention for people living with long COVID, but there’s loads of indirect evidence. And there’s also enough evidence in long COVID to give us the signals and clues as to which direction we could be traveling in. And so there was four key messages that came out in this.
Speaker 2 (10:31):
So the first was before recommending physical activity, as a rehabilitation intervention for people living with non COVID individuals should be screened for post exertional symptom exacerbation. Now, this is a term that’s called different things. So post exertional symptom exacerbation is something that I quite like, but it’s also used by other groups sometimes more commonly known as post exertional malaise, but can also be known as post exertional neuro immune exhaustion, basically, in a nutshell, when you exert yourself, whether that be physical, cognitive or social exertion, your symptoms get worse. So obviously before you get people to exercise, it would be quite useful to know whether they’ve got that because you can’t exercise your way out of a symptom, which is made worse by exemption
Speaker 1 (11:21):
And, and from a physical therapy. Cause we’re both physios from that physiotherapy perspective, how do we screen for that? Is it a simple questionnaire?
Speaker 2 (11:33):
So this is where the briefing papers really quite useful because obviously that’s the first key message. And the way the briefing paper is designed is that you have the key message and the rationale for that key message. So if anyone’s now going, why they brought that key message out in the briefing paper, there is an evidence based rationale for that. And then off the back of that, there’s an action. So each key message has an action point where clinicians and also communities of people living with an effected by long COVID can utilize these action points. So as you rightly said, there are ways of screening for post exertion or symptom exacerbation. Now, one of the best ways of doing that is actually a narrative approach, which is having a effective communication between clinician and the person accessing the clinicians care. So one of the nice things about this briefing paper is it’s also included the whole context of person centered rehabilitation and the therapeutic Alliance or relationship and how that’s going to be an integral part of ensuring that safe rehabilitation is provided. Because if you can use a narrative approach to hear that people are experiencing this symptom, then it’s a really good starting point. There are other tools though.
Speaker 1 (12:47):
So are you saying that we actually have to make the time in our evaluation to speak with our, the person in front of us to really get to know them and to ask more narrative questions, motivational interviewing, not just yes and no, and typing into a computer
Speaker 2 (13:06):
Now that’s that’s yes, that’s leading, right? So, but you know, the average person probably listening to this, he’s probably going, of course, I listened to my patients. Of course I communicate with my patients, but, but, but I think what it is, it’s about providing space for people to feel safe, to provide the information that they can engage in. So if person centered care is going to be a key pillar of rehabilitation, we must make sure that our patients feel safe to open the engage in rehabilitation with meaningful connections that are established with the clinicians knowledge, but also the patient’s belief and knowledge of their own lived experience. And I think this isn’t new to many people, but I think it’s a really vital skill that we can harness in terms of delivering safe rehabilitation.
Speaker 1 (13:56):
Yeah. And everyone deserves to be heard and acknowledged and seen and given the space to do that. So as physiotherapists, we should obviously be doing this with every patient. But when you’re seeing patients who are living with long COVID, I think it behooves you to give them some extra space because I’m sure they have experienced people, not believing them. Like you said, just exercise your way out of it. You’ll be fine. And because a lot of people with long COVID, unless you maybe are walking with an assistive device, they may come in and look, okay. Yeah.
Speaker 2 (14:40):
Th that’s that’s the key point, isn’t it, you know, a long COVID could be classified for many people as an invisible disability. And certainly it’s something that’s experienced as, as not only, but also episodic in its nature and also unpredictable. So someone may look okay, one moment, but not another. And this is something that I’ve talked about from the lived experience of having the symptom of post exertional symptom exacerbation, which is that it’s, it’s wholly invisible to the majority of people because when I’m out and about, and I’m doing okay, people see that I’m doing okay, well, they don’t see as the repercussions of that a day or two later where I’m laid up in bed because no, one’s around me when I’m laid up in bed and no one can see that. So it is truly an invisible symptom and that’s where people need to feel safe to talk about that.
Speaker 2 (15:26):
Because a lot of people may not understand it themselves and may be very confused by this because my experience was, I was totally confused as to what was going on with my body, when this was going on. And I was very lucky that people were able to guide me through what the symptom was and to understand it better. Yeah. And you’re in the biz. So just people who aren’t. Right. Yeah. I have a head, I have a level of health literacy that is probably different to the general population. And I didn’t have a Scooby-Doo what was going on with my body. I thought I was doing the right things to try and rehabilitate myself by gradually increasing my activities. What I thought was dependent on my symptoms, but I had zero clue what was symptoms were doing because they were all over the show, but there are some tools to screen for this as well.
Speaker 2 (16:14):
And that’s within the briefing paper. So there is a range of different questionnaires. And actually specifically within the, the, the briefing paper, there is a a box which actually has these 10 items that you can use. And it tells you how to score it, how it links it to the evidence-based research, which comes from Emmy and CFS. Hasn’t been validated in long COVID, I’m sure that work will happen, but it’s a tool that could be useful. There has been some research already that’s come out of Calgary in Canada, which has used this tool specifically along COVID. And actually that was published as a pre-print literally the day after this was published. So it’s not included in the briefing paper and that’s a sign of how fast this research is moving, but a very high percentage of people are scoring as the threshold for experiencing post exertional symptom exacerbation when living with long COVID.
Speaker 2 (17:07):
So it’s there, it’s prevalent. It’s an important consideration because what we know is that a graded exercise therapy program, which is incrementally increasing the amount of activity you do, irrespective of your symptoms has been shown to cause harm in other populations of people, particularly MEFs that experience post exertional malaise, and at our heart of what we do rehabilitation should be there to support people. It should be nourishing. It should be improving functioning, and it should not be causing harm. And that’s where that narrative approach is useful because when we provide interventions, we need to provide the safe spaces for people to tell us that it might not be working and not allow people to feel that it’s their fault that it’s not working because they’ve got this symptom.
Speaker 1 (17:57):
Yeah. So, so, so important. We don’t want to place the blame on someone for something which they have no control over. Right. And, and I think as, as physiotherapists, we have to check our biases. We have to understand that when this person comes in, I mean, we all have biases. We were, that’s how we are, you know, maybe not as a four year old child, but certainly as you grow up, you acquire these biases and you have to know as the practitioner to be able to recognize that bias and push it aside, right.
Speaker 2 (18:36):
That’s such an important point about implicit bias as well and unconscious bias. Because I think actually wholly as a profession physiotherapy has an unconscious bias, which is that the mantra exercise is medicine is within our bones. And I think as a profession, it’s quite hard to hear that exercise can’t cure everything
Speaker 1 (18:58):
Well. And, but I think you kind of said this earlier is exercise is prescribed. So we need to prescribe it just like you would prescribe a medication by dose. Right. So, and sometimes guess what that dose is zero, right? Sometimes it’s zero, you’re prescribing it. So again, it’s that exercise is medicine. Yes, it’s a thing. But you have to know enough about the person in front of you to know how to prescribe it. Exactly.
Speaker 2 (19:29):
And that’s where physio therapists are. So ideally placed to take on board these messages, there’s key message of screening for post exertional symptom exacerbation, because we all are good at prescribing physical activity and exercise interventions that are based within a rehabilitation model. And we are also good at knowing when not to prescribe. And I think that if we’re given the tools to be able to identify the symptom, recognize that there might be an adapted approach that’s needed that works with individuals and potentially takes a stop rest and pace approach because pacing is not easy to do. I’ll say that from lived experience you know, there’s, there’s so much that can be done beyond the scope of just prescribing physical activity and exercise interventions. And I think that physiotherapists are so ideally placed to be working along those lines and working with our multidisciplinary team colleagues. And this is where the big shout out to the OTs go because pacing is their bread and butter.
Speaker 1 (20:28):
Yeah. Yeah. For sure. Absolutely. Okay. So we’ve got one key message is screening.
Speaker 3 (20:38):
Cause there were four, right? So what’s number two, we
Speaker 2 (20:42):
Went on a topic, but it’s important.
Speaker 4 (20:47):
Speaker 1 (20:47):
The most important part is to be able to screen and know the person in front of you. Yeah,
Speaker 2 (20:53):
Yeah, absolutely. So the second is about cardiac impairment. So what we know is that before we prescribe physical activity, interventions, including exercise or sport, we need to exclude cardiac impairments. Now there is enough evidence to demonstrate that’s people that have had coronavirus and people that are living with the long-term consequences are long COVID can have cardiac impairment. And that can include things like pericarditis, myocarditis, even at mild levels. Now we know the opposite. There’s a favoring for excluding exercise interventions for people that do have perio myocarditis for the safety implications. So reducing morbidity and mortality. Now, obviously this is a safety message. We don’t have enough evidence yet to say what the true prevalence of cardiac impairment is amongst people living with long COVID what the safety implications are. But this key message is we must make sure that we are conscious of this because the evidence is indicating there’s a risk and we need to be mindful of that risk.
Speaker 1 (21:58):
Right? So as a physiotherapist, if someone is coming to us with long COVID, who has not seen a physician has not seen a cardiologist has not had a cardiac workup, it would behoove us to say, Hey, listen I think your next stop should be, let’s get you to a cardiologist to evaluate your cardiac function,
Speaker 2 (22:18):
But depending on symptoms, certainly. So, you know, people are having it disproportionate tachycardias on exertion. They are having strange cardiac symptoms, including changes to heart rate and blood pressure. They have chest pain, they have desaturations, you know, the classic cardiac symptoms that you’d expect. You’re not going to try and push them through an exercise program. You’re going to encourage them to see a physician first. And I think that there is going to be many people living with lung COVID that might not be going through specialist services for people designed for people living with non COVID. And there may be many that come through the doors of physical therapists and physiotherapists around the world first. And so this message is there because we need to make sure that we are aware that there is a risk.
Speaker 1 (23:06):
Perfect. Okay. What’s number three. So
Speaker 2 (23:09):
We know that third one is around excluding exertional oxygen desaturation. So what we know is that COVID-19 can cause interstitial pneumonias. And so we have seen this in other diseases. So, you know, it can be things like pneumocystis, pneumonia, or PCPs. You see it in things like interstitial lung disease or idiopathic lung fibrosis with these they can cause these saturations on exertion basically, and as the most safest thing, you want to make sure that your patient is not hypoxic when you try to exert them. So it’s a simple thing, but what we know is that this is often something that may have happened to people during acute COVID, but it doesn’t mean that they can’t have it ongoing. And we are seeing people that are having pulmonary impairments and sometimes these pulmonary impairments can manifest slightly later on as well. So it’s just to be mindful of this.
Speaker 2 (24:04):
So the world health organization does recommend, you know, the pulse oximetry is used to measure that’s and certainly in terms of long COVID services. So I’m based in England. So the long COVID services that are here do often utilize functional performance measures to determine if someone is exertion de-saturated and they might use something like a sit to stand test or a 40 step test to see if somebody is exertional desaturation, or having disproportionate successional tachycardias as well. But that needs to be finely balanced with point number one about posted exertional symptom exacerbation. Because obviously you don’t want to put somebody through a test to determine if their exertion de-saturated, if it’s going to cause them to end up in bed for a bit.
Speaker 1 (24:49):
Yeah, absolutely. Again, why point number one was so important. Let’s go on to point number four.
Speaker 2 (24:56):
So point number four is about autonomic dysfunction and orthostatic intolerances. So many physiotherapists might not be aware of some of these conditions. So for example, there’s something called pots or postural orthostatic tachycardia syndrome which is where people change posture. They go from lying to upright there, their heart rates go really, really high. And with that, they can have symptoms of presyncope or even syncope. And also other orthostatic intolerance is exists where people can have really significant drops in their blood pressure again, causing issues with precinct pain syncope. So these dysautonomia is, are actually being seen to be quite prevalent in many people post virally, potentially. When they’re living with long COVID, I said potentially there, because we don’t really know what’s going on with long COVID. So so we are seeing there’s a higher amount of that and the American autonomic association has already published some guidance on that specific to long COVID.
Speaker 2 (26:00):
So the key message with this is if you’ve got somebody who, when they change position may have a disproportionate dropping their blood pressure or a disproportionate increase in their heart rate, you probably don’t want to be getting them doing a downward facing dog or sitting on an upright bike because the likelihood is they could find, or they could have a heart rate of 220. So we need to think about that. Now there are lots of existing research prior to even COVID existing about dysautonomia is including pots and there was all these protocols that existed. And actually some of the work that’s come out of Mount Sinai in New York has been looking at adapting those protocols to develop something called autonomic conditioning therapy which that developed in the context of long COVID. But it’s really important that we’re aware of this because if we’re going to be looking at whether a physical activity intervention, including exercise or sports is going to be safe and effective for our individuals sat in front of us in the absence of evidence, guidance, and policies and standards. We need to be aware that these things are happening and people are having strange symptoms including changes to their blood pressure and heart rates with changes in postures. And the, the briefing paper is really clear on what it is what can cause it, how to measure it and what to do if it’s there.
Speaker 1 (27:26):
And so we’ve got those four key messages. We’re not going to dissect every bit of this briefing paper, because that would be a whole weekend course, I think, but for people that are listening, what, you know, as being one of the authors of this paper contributors to this paper, what, what is that, that group’s hope for people upon reading this paper?
Speaker 2 (27:53):
So I don’t know that I can speak for everybody that was contributing to this, but I would imagine that the majority of people have the same opinion as me. It’s the lead author of this which is that we hope that this supports firstly, communities of people living with an effected by long COVID when they are accessing care, which is they have a resource that they can take with them to their health care providers and have these open conversations and dialogues about what may or may not be right for me. I also think that collectively, we all really hope that this is going to support clinicians that are going to be providing care for people living with and affected by non COVID. Because we know that at the moment, a lot of people are looking for information and there’s, there’s a lot of information that’s either direct or indirect, and sometimes it can be difficult to see the wood for the trees when there’s that much information.
Speaker 2 (28:48):
And so we’re really hoping that this has consolidated over 180 citations into one document and every single citation has got a PDF link. So you can access that literature yourself. You can do your own research around it, should you want to, but we’re hoping thirdly, that this will be a starting point. We’re hoping this is going to be a starting point for hopefully international collaborations to work on these messages, to develop guidelines, standards, and policies around that as the evidence continues to emerge, but also to guide the research agendas, because obviously there are going to be some people where exercise will work for them, but we need to know who they are. And we need to make sure that whilst we’re doing that research, that we have the safety messages at the heart of delivering that research too. So this crosses communities, clinical practice policy and also research.
Speaker 2 (29:46):
So I think the hope is that this has wide reaching impact. Obviously we need to see how that is, but this isn’t the end of the journey. This is going to have further interest iterations. This is a live document. This will be updated as more research comes out, but we hope as well that people will work with us as things move forward and looking at international collaborations because we know that it’s interprofessional, but also multi-sectorial collaborations that meaningfully engage and increasingly include people living with an effected by the health condition that leads to much more positive responses in all of the responses to that health condition.
Speaker 1 (30:25):
Yeah. And, and last thing I’ll, I’ll touch on here. And that’s, I think what you were getting at at that last little bit is really looking at the social determinants of health and of the people who are affected by long COVID. I know I can say here in the United States that we know that African-Americans and Hispanics within the United States much more effected by COVID than other other folks. And so can, might, might this also be with this international collaboration across a lot of different professions, a way to really look at our social determinants of health and what can we do as healthcare providers and researchers, and so on down the line to make sense of this and to to address this, even in, in a small way, I know it’s opening a whole can
Speaker 3 (31:25):
Of worms, but you know what I’m saying? Yeah, I
Speaker 2 (31:28):
Do. And I think it’s, it’s a can of worms I’m prepared to go into. So so yes, we know that in different parts of the world obviously the people that are affected more by acute Corona virus has been disproportionately people of different ethnic groups. So for example, here in the UK, we are seeing it more amongst black, Asian, and minority ethnicity groups. And we’re also seeing it amongst different populations of people in terms of employments, but also in terms of socioeconomic status. So we know that health workers and teachers are more likely and people that drive buses, people from black, Asian, and minority ethnicity groups and people that live in deprived areas in the UK. But what’s really interesting is we’re not seeing that same demographic appear in terms of who’s presenting in terms of the demographics of people that we are collecting data on in terms of long COVID.
Speaker 2 (32:16):
So what we’re seeing in the UK so with the office for national city plastics, which is probably the most representative and largest epidemiological studies on long COVID to date globally, it’s actually disproportionately young white women that are have relatively different social economic. So I think the aims of maybe an unintended aim, but hopefully a positive unintended outcome is that if more people are aware of some of these key indications of awareness, maybe some greater awareness of lung, COVID the people that are probably more likely to get COVID are probably going to also be more likely to get long COVID, but we’re not seeing that come out in the data or the people presenting to those services. So we need to think about health inequalities in terms of the candidacy of people to access these services, how permeable are they to access?
Speaker 2 (33:19):
How, how is the adjudication between the individual and the health care providers to be referred to that? What’s the individual’s candidacy to raise their voice, to say I deserve to access these services. And at the moment we know that structural racism exists, health inequalities exist, and people that experience structural racism often experience healthcare incredibly different to other groups such as white people. And so it’s probably likely that many of these people may also be living with long COVID and not presenting to health services and not being counted. And this is a particular issue globally, which is that we’re still not effectively counting on COVID. And so we don’t know the proportionality of people affected by it and the need globally. So if this briefing paper has any way in contributing to more clinicians, more people being aware of some of the signs and symptoms of lung COVID and particularly those key recommendations in terms of safety, if they can say, well, maybe you do have long COVID. It might be a way of identifying people that are more at risk, but also are more vulnerable to not accessing services.
Speaker 1 (34:21):
Yeah. Perfectly said, I am in awe of your of your ability to succinctly and efficiently get big ideas across that allows people to understand better. So thank you very much for that. That was wonderful. Now, before we sign off here, where can people find you? They have questions. They want to know what’s up. I love
Speaker 2 (34:44):
A bit of Twitter, so I’m on Twitter, I’m at Darren brown. Also we’ve got our long COVID physio group at long COVID physio on Twitter. We’ve also got a website long covid.physio. So they’re probably the best way he’s very responsible on Twitter. So yeah, I won’t give out my email address, no need,
Speaker 1 (35:02):
No need to, no need to get that personal. But I do have one personal question before. So knowing where you are now in your life and career, what advice would you give to your younger self? Oh
Speaker 2 (35:13):
My God. So you warned me about this earlier, didn’t you and I get to repeat what I said earlier. I was like, oh my God, this is like, RuPaul’s drag race. Isn’t it. There’s going to be a picture of a five-year old Darren big helicopter. What would you say to baby Darren? Do you know what I would actually say? Whether I was on RuPaul’s drag race or dot is the diversities of people bring out the strengths in others and I’m a man, and I know that Mo and I’m now a person living with an episodic disability. Those things have made me a better person and enabled me to have conversations with my patients and the people that come and access my care in a completely different way that because of the lens that I’ve seen society and life. So if I was seeing myself as a younger Damron, I would have said, be proud of who you are, be accepting of who you are and know that your diversity, your differences, your quirks, your geekiness, your diff, your things that make you unique are going to truly make you unique when you’re older and give you advantages in terms of how you navigate life, society and your job.
Speaker 1 (36:23):
I love it. Thank you so much. That was so perfect. What a great way to end this podcast, Darren, thank you so much for coming on. Thank you for your time. I really appreciate it. Thank you for having me and everyone. Thanks so much for listening. Have a great couple of days and stay healthy, wealthy and smart.