Dr Funmi Okunola: Welcome to the podcast, special of Long COVID, The Answers.
Speaker:My name is Dr. Funmi Okunola and we are recording this in March, 2026 as part of
Speaker:international long COVID Awareness Month.
Speaker:Over the past few days, I interviewed some key people at the World Health
Speaker:Organization who care about the recognized international public
Speaker:health emergency of long COVID.
Speaker:The World Health Organization is the United Nations specialized
Speaker:organization for global public health.
Speaker:Its job is to coordinate international health efforts, set medical standards,
Speaker:and help countries in health emergencies.
Speaker:Over 190 countries, which it terms member states are part of the WHO, all
Speaker:of the people we will interview for this podcast, special work tirelessly
Speaker:to keep us safe during the pandemic.
Speaker:Dr. Maria Van Kerkhove is the director of the Department of Epidemic
Speaker:and Pandemic Threat Management at the World Health Organization,
Speaker:an epidemiologist by training.
Speaker:Her career spans over 25 years of international pandemic management
Speaker:of a multitude of pathogens, including most recently SARS-CoV-2
Speaker:H1N1 Influenza, MERS -Coronavirus
Speaker:Welcome, Maria.
Speaker:Thank you so much for having us.
Speaker:Dr. Jamie Rylance is the clinical lead for long COVID and part of the clinical
Speaker:management team of the health emergency program at the World Health Organization.
Speaker:Dr. Rylance was a consultant, respiratory physician working in the UK NHS, and
Speaker:formerly an associate professor of respiratory medicine and global health
Speaker:at the Liverpool School of Tropical Medicine with experience of teaching,
Speaker:research and investigation of tropical disease in lower middle income countries.
Speaker:Welcome, Jamie.
Speaker:Pleasure to be here.
Speaker:Thanks, Maria, if we start with you, how would you describe
Speaker:the World Health Organization?
Speaker:What is its relevance today?
Speaker:Well, I mean, it's a great question.
Speaker:You, you talked about it a little bit in your introduction, but
Speaker:essentially we are part of the United Nations that deals with health.
Speaker:We bring people, partners, nations, people everyone, everywhere.
Speaker:Together to promote health, to keep the world safe, to , serve vulnerable.
Speaker:And what we try to do is we try to turn science into action, science, into
Speaker:prevention, , and really improve the lives of people all over the world.
Speaker:so we bring the best minds together to tackle some of the
Speaker:world's biggest health challenges.
Speaker:Jamie, what do you think the World Health Organization represents?
Speaker:I think it recognizes a number of things.
Speaker:Firstly, health in its complete sense.
Speaker:So not just not having a disease, but able to have a fulfilling and full life.
Speaker:it recognizes health as a fundamental, right.
Speaker:Something that's non-discriminating, something that's universal.
Speaker:, and it's also a pillar of.
Speaker:Global peace, global stability without health that sustainable
Speaker:peace is really not achievable.
Speaker:But I think it stands also for cooperation both at individual levels and at the level
Speaker:of the member states, which you mentioned.
Speaker:and we are here really to support governments, their duty to their people
Speaker:to attain the highest level of health.
Speaker:Gosh, those are both excellent answers.
Speaker:Thank you.
Speaker:Maria, you were very much the who's face to the media during the pandemic.
Speaker:Could you please explain your role to our audience?
Speaker:A lot of whom are non-medical.
Speaker:Well, thanks for actually not introducing me in the
Speaker:beginning as the face of COVID.
Speaker:That's one of the least my least favorite things as people to say, I'm
Speaker:an infectious disease epidemiologist, and my role before COVID.
Speaker:Was the MERS-Coronavirus technical lead.
Speaker:And when we first learned of this cluster of pneumonia, of unknown etiology in
Speaker:Wuhan China in late December, 2019 , we set up an emergency team, which we
Speaker:call our incident management team.
Speaker:And as part of that, I was the health operations and technical lead.
Speaker:My job was to work with the people that we have here at WHO and all
Speaker:over the world to turn science, to turn data, to turn knowledge into
Speaker:evidence-based guidance, into strategies.
Speaker:I worked with Jamie during part of COVID, 'cause he joined us during that time.
Speaker:But I worked with the clinical management teams, infection prevention
Speaker:and control risk communication, community engagement, surveillance,
Speaker:diagnostics, basically to tell the world.
Speaker:What they needed to do to identify the patients, to care for patients,
Speaker:to prevent infections, to save lives, and part of that was to
Speaker:answer questions for the media.
Speaker:It was actually a small portion of the job that I had.
Speaker:And over the course of the three, four years, I've done hundreds
Speaker:of conferences with our director, general Dr. Tedros and our executive
Speaker:director at the time, Dr. Mike Ryan.
Speaker:It was an absolute privilege.
Speaker:To do those press conferences to essentially answer what we know, what we
Speaker:knew what we didn't know, what we were doing to find out, and really importantly,
Speaker:what it meant for you, the audience who was listening to us, whether it was
Speaker:journalists or presidents or parents.
Speaker:you know, how do you keep you and your loved ones safe?
Speaker:Jamie, could you please explain to our audience your role at the World
Speaker:Health Organization and how you represent people with long COVID?
Speaker:Sure.
Speaker:Well, I think at the general level, we bring together people,
Speaker:stakeholders, anyone who's involved in improving the life of
Speaker:people.
Speaker:and we try and keep a science-based response we produce a lot of
Speaker:guidance as a result that brings the people and the science together.
Speaker:my job in WHO is a bit more clinical, so it's where the public aspect meets
Speaker:individuals and patients as you.
Speaker:Would call them if they were admitted to a hospital, for example.
Speaker:My job's less about the prevention and more about the response.
Speaker:And as part of the safe and scalable care in the emergencies program, often
Speaker:responding to acute episodes of infectious disease and we've mentioned COVID-19, but.
Speaker:Understanding that although I'm a hospital doctor by training health and, patient
Speaker:journeys start well before that and finish as long haulers know well after that
Speaker:and so really making sure that we have a response that is tailored to an individual
Speaker:as best we can from this very global level but using all the expertise we can.
Speaker:Patients, professionals, organization, everybody.
Speaker:I think from the science point of view, we are, a source of honesty.
Speaker:I think we are honest about what we don't know.
Speaker:We support the scientists, and the global science community to fill in the gaps.
Speaker:and I think from long COVID, there's been huge amount of effort and substantial
Speaker:improvements in breakthroughs.
Speaker:but then subsequent to that, well, what do you do about it?
Speaker:So we issue guidance about how to put that science into action
Speaker:to make people's lives better.
Speaker:Maria, you and I met in November, 2025 at the UBC Center of Disease
Speaker:Control, global Health Security Summit in Vancouver, Canada.
Speaker:You were the keynote speaker there, and as a big, long COVID advocate,
Speaker:I was really inspired by your speech as your opening line was
Speaker:"we are not really post COVID.
Speaker:We are post COVID crisis, and it's still very much with us.
Speaker:And I think we really need to address this as I think there is a collective
Speaker:amnesia about wanting to put this in the past, and it's really not in the
Speaker:past." I'm quoting you there, can you please elaborate on that statement?
Speaker:Yeah, I think many people want to think we're done with COVID.
Speaker:that COVID is over.
Speaker:It was a very painful part of our lives.
Speaker:many of us lost loved ones, trajectories of people's lives changed.
Speaker:Livelihoods were altered and I think many people, because of the trauma
Speaker:that everyone went through, really wants to put that in the past.
Speaker:But COVID is still very much with us.
Speaker:the virus, SARS CoV-2 is still circulating and circulating in all
Speaker:countries, certainly not at the level that it was during the crisis of COVID,
Speaker:but we still have people with acute infection, acute disease, and we have
Speaker:many, many people with long COVID.
Speaker:And so for us, for the rest of the world, for governments, for
Speaker:ministries of health, this is not over.
Speaker:I think it's important for us as the World Health Organization, as the
Speaker:World's health organization, working with governments to keep people safe.
Speaker:We need to keep attention on these threats that we currently face
Speaker:because they're still very much with us, but also everything that
Speaker:we've done for COVID is important
Speaker:for the next one, I think.
Speaker:I also want to make sure that for those who are suffering from long
Speaker:COVID, that they're not forgotten.
Speaker:The legacy of COVID cannot be just death and devastation.
Speaker:It needs to be what we're doing to make these systems better, to make sure that
Speaker:the next time we are better prepared and that we still continue to care
Speaker:for those who are suffering from long COVID, who are suffering from acute
Speaker:infection, who are still dying from COVID.
Speaker:Thank you so much for that statement.
Speaker:I know it will mean a, a huge, thing to all of the people
Speaker:suffering from long COVID out there.
Speaker:thank you, for saying that.
Speaker:So Jamie, long haulers, feel forgotten, ignored, stigmatized and marginalized by
Speaker:the medical profession and the non-medical public as a clinical lead for long COVID
Speaker:at the WHO, what are you doing and who are you working with to combat this situation?
Speaker:Yes.
Speaker:So still many years on, it's similar issues that we're facing and raising
Speaker:awareness in all of the people that you mentioned is really important.
Speaker:The recognition, as you say that neither the pandemic nor, COVID-19 are
Speaker:over for any of us really and things, people and health systems can be quite
Speaker:messy and, difficult to navigate.
Speaker:Quite inefficient, and one of the things that we are trying to do
Speaker:is improve the navigation of those systems, improve how patients understand
Speaker:their disease, how doctors understand their diseases, and how researchers
Speaker:are working to improve treatments.
Speaker:For example, knowing where do I go communicating the entry points to
Speaker:healthcare and seeing what models work in different places, because
Speaker:clearly one size does not fit all.
Speaker:When we're talking about members.
Speaker:But really what can we learn from each other?
Speaker:And that's most obvious sometimes at the research community level where everyone
Speaker:builds on everyone else's success.
Speaker:But pulling together the different aspects, parts of treatment, the
Speaker:rehabilitation, mental health aspects.
Speaker:Laboratory science, science and learning from best practice.
Speaker:And so we try to bring scientists together within that context to talk to each
Speaker:other and, to set up some simple tools for education, example for doctors and
Speaker:patients, to help the scientists underpin, their work by harmonizing the data and the
Speaker:definitions and lots of technical work, that needs to underpin that, but also.
Speaker:Certainly with our colleagues in the, regional office in Europe doing some of
Speaker:the research, looking at cohort studies, what are patients suffering with now?
Speaker:from the later infections from COVID, not from the early pandemic, from when
Speaker:our data, mostly come and now putting all that people in the science together,
Speaker:again, coming up with guidelines.
Speaker:as part of our, living guideline on, COVID-19, which includes rehabilitation
Speaker:and other treatment aspects, and also supporting other disease
Speaker:guidelines, which, are associated with COVID-19 and long COVID, but
Speaker:aren't always ostensibly about them.
Speaker:So really bringing some sense that this is a patient need a people's
Speaker:needs that can be asked and answered across a bigger range of products.
Maria:Oh, thank you.
Maria:I really feel the passion with both of you that you are rooting
Maria:for long haulers out there.
Maria:Maria, on March the 11th 2020, the who, director Journal Dr. Tedros
Maria:Ghebreyesus declared COVID-19 A Pandemic.
Maria:That's just over six years ago.
Maria:We now have the public health crisis of an estimated 400 million people
Maria:worldwide, suffering from long COVID as a result of SARS CoV-2 two infection
Maria:without a cure for the disease
Maria:Dr Funmi Okunola: and a medical profession that is not providing adequate training
Maria:for diagnosis and rehabilitation.
Maria:What is the WHO's role in managing this?
Maria:So we first started meeting patients with long COVID or advocates for
Maria:patients with long COVID in August, 2020.
Maria:And what they asked for with our director general who came to that
Maria:meeting with me, with Janet Diaz, who's the head of the clinical team,
Maria:and they asked for three things.
Maria:They asked for recognition, they asked for research, and they asked for rehab.
Maria:And that first one on that recognition.
Maria:Was so critical and remains critical because this is happening.
Maria:This is something that is real.
Maria:WHO is making sure that there are strong case definitions, and that
Maria:may sound very simple, but when we say long COVID people mean different
Maria:things in different countries.
Maria:For just us to have an understanding of what.
Maria:The scope of this real issue is we need to have the medical community
Maria:talking about the same thing.
Maria:We need to make sure that we have treatment for people who are suffering
Maria:from long COVID, dealing with many different parts of the body.
Maria:And Jamie touched upon that in his previous answer, and
Maria:we need much more research.
Maria:There's more that we understand, of course, but there's far more work to do
Maria:to better understand what is actually happening to guide the treatment
Maria:options, to drive, rehabilitation.
Maria:And so for us, one of the major things that we do is, one, is we keep
Maria:up the recognition, we keep up, the awareness of this, because this is real.
Maria:We advocate for this.
Maria:We are constantly looking for funding to support research,
Maria:to support cohort studies.
Maria:Just have the investment to better understand this, and we're
Maria:making sure that we turn whatever evidence we have into guidelines,
Maria:into guidance to keep people safe.
Maria:So it's turning that data, that knowledge from, knowledge knowhow into how to.
Maria:And that convening power is really important.
Maria:Just to be heard, is important and what Jamie was mentioning is we don't only work
Maria:with clinicians, we work with patients, we work with patient groups to make sure
Maria:that what we do advise is applicable, is acceptable, is implementable.
Maria:That we can help as many people as we possibly can.
Maria:So for us, this isn't over.
Maria:and I wanna make that really clear.
Maria:You may not hear about us talking about long COVID every time.
Maria:We certainly don't get questions about it like we used to at the press conferences.
Maria:But this is something that is a priority for us and we really do need
Maria:more attention to this by governments.
Maria:We need more funding for this to continue to better understand it, and
Maria:really importantly, to have better guidelines to support patients.
Maria:Oh, thank you.
Maria:Jamie privately, you and I have discussed the need for a consensus
Maria:definition of the post COVID syndrome.
Maria:Could you explain what this is and why it's important?
Maria:Yeah, thanks.
Maria:So we've used a few different terms to try and describe the
Maria:same thing even on this interview.
Maria:post COVID condition, long haulers
Maria:long COVID, and that's just in the use of the language, what underpins
Maria:that and how you identify people.
Maria:People that are suffering from it, people that are at risk from it, or
Maria:people that might be treated for it.
Maria:We all really need to start speaking the same language.
Maria:And WHO were really early, I think, to develop the case definitions
Maria:for adults and for children.
Maria:They were pragmatic.
Maria:They were broad, they were based on symptoms.
Maria:If you had symptoms of it.
Maria:You could, have a diagnosis of long COVID or post COVID
Maria:condition, as we would call it.
Maria:Follow that through.
Maria:I think there's an increased understanding now of different
Maria:patterns, different subtypes of disease.
Maria:Clearly patients are all different, but there are increased recognitions of
Maria:clusters of things that can be recognized.
Maria:Recognize scientifically and medically because they have unique treatments.
Maria:and there's equally an increased recognition of the post-acute sequela,
Maria:meaning the things that happen after COVID infection that are probably not captured
Maria:if we just talk about symptoms, and we've talked about some of the
Maria:organ dysfunction and the damage that the virus and infection can
Maria:do to your body, don't capture that well in the current definitions.
Maria:So there's a challenge.
Maria:The definitions need to be specific because we have to know what we're talking
Maria:about, but they have to be inclusive.
Maria:They have to make sure that everyone is counted.
Maria:They have to be stable to be useful because everyone needs to know where
Maria:they are, but they also have to respond to the changing landscape over time.
Maria:And so I think, that, now is a time when we are reconsidering whether the
Maria:case definition from four years ago now, five years ago, is still the best
Maria:it can to make sure that everyone's included, everyone's talking the same
Maria:language, and together we can, face
Maria:the medical and the research and all the other social
Maria:challenges that we need to face.
Maria:Yeah.
Maria:very much endorse that.
Maria:and we've talked about how the virus really affects every organ
Maria:in the body and it really is impacting on the whole community.
Maria:we are seeing increases in type two diabetes and kidney disease
Maria:and heart disease from, SARS-CoV-2 infection, probably repeated
Maria:infection, as well as long COVID and then people are still hospitalized.
Maria:with COVID and come out with organ damage.
Maria:So there's all these different effects that the virus has that's what you are
Maria:trying to get, isn't it, in that, new consensus definition you are working on.
Maria:Yeah, exactly right.
Maria:Yeah.
Maria:Great.
Maria:Maria, why let's, Maria, why is International long COVID
Maria:and Awareness Month important?
Maria:Well, it's important for, I think, three reasons from my point of view.
Maria:One is that we keep up awareness, we keep up the attention to what is happening and
Maria:what so many people are suffering from.
Maria:For all the reasons that we've talked about in this podcast, I think it's
Maria:important because people need to feel heard, that their voices are heard,
Maria:that their voices are important, what they're going through is important.
Maria:The third reason is bottom line is we're all people.
Maria:we're somebody's parent or child or friend, or aunt or uncle, and we see
Maria:what it's like to watch one of our loved ones suffer, and we all wanna
Maria:do whatever we can to keep our loved ones safe and healthy and happy.
Maria:and so the awareness
Maria:about this is important, and again, I really wanna reiterate that at
Maria:the World Health Organization, this is important to us.
Maria:as Jamie said in the beginning, we look at the whole health of the individual.
Maria:we look at their mental health, we look at everything surrounding
Maria:their ability to lead healthy lives.
Maria:and we take that very seriously.
Maria:We are here at the World Health Organization, not because we have
Maria:to be, because we want to be, and we get to work with people like you.
Maria:I get to work with people, experts, from all over the world.
Maria:again, to bring the best minds together to solve these really, really complex
Maria:problems and that's a privilege.
Maria:Jamie.
Maria:What does international long COVID Awareness month mean for you?
Maria:I've been thinking about this and I think it addresses for yous.
Maria:One, Maria has already mentioned unheard people.
Maria:Advocacy and awareness of those unheard voices is still so important
Maria:and unanswered questions with long COVID still left without the answers,
Maria:still the stigma that we've mentioned that really needs to be addressed.
Maria:Underfunded needs to be a rallying point for funding and to make sure
Maria:it's high on the agenda of everyone, but particularly people that can help
Maria:drive improvements in care, in research, and those things we've talked about.
Maria:And lastly, untreated because I think there's an under recognition of symptoms
Maria:and the access to care that people need.
Maria:It needs to be individualized, but they need to recognize it and need
Maria:to be straightforward pathways to get that care that they need and
Maria:to support the individuals and the family and community around them.
Maria:Thank you both for joining us today.
Maria:a, really powerful interview actually.
Maria:And, I really feel from this interview that, the World Health Organization is
Maria:doing so much to help, long haulers.
Maria:you know, you like a swan, but busily sort of working those feet under the
Maria:water furiously as you glide along.
Funmi:yeah.
Funmi:really feel,
Funmi:uplifted and inspired by what you've both said today.
Funmi:Thank you for everything that you do and, and for keeping
Funmi:us safe during the pandemic,
Funmi:And I know you'll do the same for the pandemics to come.
Funmi:thank you for the wonderful work that you both do.
Funmi:Thank you.
Funmi:Very welcome.
Funmi:And thank you.
Funmi:Dr Funmi Okunola: Cristiana, would you like to introduce yourself?
Funmi:Thank you very much for this opportunity.
Funmi:My name is Cristiana Salvi and I'm the regional advisor for community
Funmi:Resilience and protection in the health security division at WHO Regional
Funmi:Office for Europe, based in Copenhagen.
Funmi:So Cristiana, what is community resilience and protection and health security
Funmi:at the World Health Organization?
Funmi:Community resilience and protection, or the way we call it CRP, is
Funmi:about putting communities at the core of emergency management.
Funmi:So health, security, not just as beneficiaries, but as partners and
Funmi:communities, we need to realize very clearly, they are not passive recipients.
Funmi:They are agents of their own protection.
Funmi:These approaches quickly become central to health security is now one of the
Funmi:main building blocks of the preparedness 2.0 strategy and action plan that all
Funmi:member states in WHO European region signed off at the end of 2024, and
Funmi:that means that countries are expected to build emergency health system that
Funmi:are truly centered on people's needs.
Funmi:so what role did this job play during the pandemic for you?
Funmi:It was critical and COVID-19 made that very clear.
Funmi:At the time, A CRP Community Resilience and Protection wasn't very
Funmi:established in the European region.
Funmi:There was not much documentation and not many concrete examples we could
Funmi:draw from what the pandemic showed us is that it's not enough to deliver the
Funmi:vaccines, the treatments, the text.
Funmi:What really matters is that people.
Funmi:Understand them, trust them, access them, and use them In simple terms, what matters
Funmi:is not vaccines, but vaccination and even more that communities have the knowledge
Funmi:and skills to own their solution and themselves to deliver the services and
Funmi:intervention that are meaningful for them.
Funmi:When we engage community and build on their strengths and overall on the
Funmi:trust that they have with each other.
Funmi:We see much stronger acceptance and uptake of protective measures.
Funmi:That's really, really powerful.
Funmi:Thank you.
Funmi:tell us about R-C-C-I-M.
Funmi:What does this acronym stand for?
Funmi:This is a pretty complex acronym that stands for Risk Communication,
Funmi:Community Engagement and Infodemic Management, and is central to
Funmi:community resilience and protection.
Funmi:This area only work well when they are together.
Funmi:Risk communication is about providing timely, trusted information
Funmi:based on community insight.
Funmi:Community engagement is working together with communities to
Funmi:co-shape and co-deliver intervention.
Funmi:And infodemic management is about addressing false information and
Funmi:building resilience, , to it.
Funmi:And together they empower people to take informed decision to protect
Funmi:their health In the European region, , traditional risk communication had been.
Funmi:Stronger and more developed com community engagement info management.
Funmi:Were lagging a little bit behind, so throughout these years we have been
Funmi:working with countries to build these capacities and create these three
Funmi:disciplines to make really one learning also from the recent emergencies
Funmi:that have hit the European region.
Funmi:This was your development, wasn't it?
Funmi:I understand.
Funmi:What inspired you to do this?
Funmi:well, I've been part of response and preparedness in health emergencies
Funmi:for the last, I would say 24 years.
Funmi:I've been working in the field for long years, and I've been deployed also in.
Funmi:That are different from countries in the European region, including
Funmi:in the African region in Asia.
Funmi:And I've been learning a lot from the experience of the community engagement.
Funmi:I would say that community engagement has been more solid
Funmi:in these areas, and we have been learning from this truth over time.
Funmi:But at the same time, COVID came up with our Single opportunity to understand
Funmi:that unless we engage community, we work together with them and not
Funmi:only for them during emergencies that we can truly control outbreaks.
Funmi:Do could R- C-C-I-M be used to raise awareness of long COVID, and if so, how?
Funmi:Absolutely.
Funmi:WHO Europe estimates that around 36 million people in the region
Funmi:experienced long COVID between 2020 and 2022, and the Fed.
Funmi:There was less testing or no testing at all after That means
Funmi:that the real number is much higher.
Funmi:At the same time, long COVID is still a condition.
Funmi:Where evidence is evolving.
Funmi:So responding effectively also means learning from people's lived experiences.
Funmi:That's where R-C-C-I-M comes in.
Funmi:It helps about basically engaging patients, listening to them, their
Funmi:concerns, their needs, supporting health workers to have a dialogue
Funmi:with them based on empathy and help.
Funmi:Communities at large better understand and accept the condition.
Funmi:It also plays a very important role in reducing the stigma and building trust.
Funmi:As knowledge continues to evolve.
Funmi:so R-C-C-I-M is really powerful, from your description and really
Funmi:necessary for long COVID advocacy, awareness and education.
Funmi:How can we implement this internationally in our countries, in our health services?
Funmi:So this month is extremely important because it gives visibility to a
Funmi:condition that is still not fully understood and consistently recognized.
Funmi:And one of the main thing is that it helps challenge stigma, which is a main
Funmi:barrier for people trying to access care while also validating their experience.
Funmi:And it's also a key message for a decision maker to invest more in research, in
Funmi:diagnosis, and access to services.
Funmi:And importantly, it helps ensure that the patient voices are heard
Funmi:and included in policy and practice.
Funmi:Wonderful.
Funmi:God, what a wonderful world would we be in if we could get everybody to successfully
Funmi:implement what you've created here.
Funmi:how has your department at the World Health Organization marked
Funmi:international long COVID awareness month?
Funmi:So we marked it by relaunching our myth buster on long COVID, and
Funmi:I'm going to explain what it is.
Funmi:We developed them launched on the 30th of January, which
Funmi:was the anniversary of the public health emergency for international
Funmi:concern to be declared on COVID.
Funmi:So we thought it was a very good opportunity and occasion
Funmi:to launch the myth buster and we are basically promoting the myth
Funmi:busters stronger during this month.
Funmi:So what are they?
Funmi:let me just say that misconceptions continue to hinder diagnosis,
Funmi:prevention, and care and rehabilitation.
Funmi:And with the support of the European Union, we have developed these MythBusters
Funmi:that basically use social media assets to combine evidence-based information.
Funmi:with real patient stories in a nutshell, this is a very strong
Funmi:example of R-C-C-I-M in action.
Funmi:First of all, we worked with the Unity groups to really get their
Funmi:insights on what are the rumor the.
Funmi:false information circulating and what we want to address.
Funmi:And then we developed these evidence-based techniques to counter these myths,
Funmi:which are proven and successful in the context of infodemic management.
Funmi:We also expose the techniques that those that manipulate information use.
Funmi:So that people can believe in false information and this need because,
Funmi:so people are more equipped to use their critical judgment when
Funmi:they encounter these information.
Funmi:And at the end we also use this patient stories.
Funmi:So stories that are.
Funmi:From people who have been living through long COVID so that they can
Funmi:foster trust and empathy, and they can really connect and truly connect
Funmi:with people at the human level.
Funmi Okunola:Oh, thank you Cristiana.
Funmi Okunola:And yes, we at Long COVID, The Answers have connected with your
Funmi Okunola:department on that, and we've been sharing and promoting MythBusters
Funmi Okunola:on our website and social media.
Funmi Okunola:So please,
Funmi Okunola:listeners and watchers go and have a look and visit the World Health
Funmi Okunola:Organization website to see those
Funmi Okunola:those MythBusters accounts.
Funmi Okunola:okay, so.
Funmi Okunola:Thank you
Funmi Okunola:for all that you do, all that you've done to keep us safe.
Funmi Okunola:You're doing some amazing, wonderful work and we truly appreciate it.
Funmi Okunola:And thank you for everything that you and the World Health
Funmi Okunola:Organization does for raising awareness of long COVID.
Cristiana Salvi:Thank you so much for having me, and thank you so much
Cristiana Salvi:for your work in spreading the truth.
Cristiana Salvi:Dr Funmi Okunola: Leo, would you like to introduce yourself?
Cristiana Salvi:Sure.
Cristiana Salvi:Thank you, and I'm pleased to join you.
Cristiana Salvi:I'm Leo Palumbo and I'm the technical officer and community engagement in
Cristiana Salvi:WHO Europe's health security division.
Cristiana Salvi:Leo, what is community engagement at the World Health Organization
Cristiana Salvi:and what role do you play in this?
Cristiana Salvi:WHO defines community engagement as the process of building
Cristiana Salvi:relationships with community actors.
Cristiana Salvi:And, we also, Moving that from something that, has been applied into emergencies
Cristiana Salvi:like Ebola and, used in universal, health coverage to broader emergency response.
Cristiana Salvi:I started with the World of Health Organization shortly before the.
Cristiana Salvi:COVID-19 pandemic.
Cristiana Salvi:so my role in terms of community engagement is, developing initiatives
Cristiana Salvi:alongside health authorities to engage at risk and affected communities
Cristiana Salvi:for an example, for COVID we set up.
Cristiana Salvi:Community engagements, initiatives, and eight different project, different
Cristiana Salvi:member states, but essentially setting up projects to tailor the COVID
Cristiana Salvi:to 19 response to realities faced by communities in those countries.
Cristiana Salvi:Right.
Cristiana Salvi:Yeah.
Cristiana Salvi:So you had a real baptism of fire starting just before the pandemic.
Cristiana Salvi:Indeed.
Cristiana Salvi:So I'd like to quote one of your phrases, referring to your skills and
Cristiana Salvi:experience, you describe yourself as making policy change happen by connecting
Cristiana Salvi:marginalized groups to policy makers.
Cristiana Salvi:Really powerful.
Cristiana Salvi:Worldwide.
Cristiana Salvi:There are 400 million people with long COVID.
Cristiana Salvi:How can you realize this statement through your work at
Cristiana Salvi:the World Health Organization?
Cristiana Salvi:How I view it is, , if you look at a lot of the existing knowledge on
Cristiana Salvi:tackling health equity, what you see is oftentimes marginalized groups
Cristiana Salvi:are underrepresented in statistics.
Cristiana Salvi:And this essentially means that they.
Cristiana Salvi:Can be invisible to policy makers because they, their needs aren't always taken into
Cristiana Salvi:account because they're not counted for.
Cristiana Salvi:So how I view community engagement in one sense is, making the invisible visible.
Cristiana Salvi:So, to go back to the example that we're here to talk about today on, long COVID.
Cristiana Salvi:One of the things we did was, using patient stories.
Cristiana Salvi:So a way to actually make visible what is the reality of someone who has long COVID.
Cristiana Salvi:if you look at the policy perspective, it also means a couple of things.
Cristiana Salvi:So one would be it's important to set up
Cristiana Salvi:mechanisms for communities to share their concerns, with health authorities.
Cristiana Salvi:I think another thing, health authorities who are interested in
Cristiana Salvi:along COVID would have to do is, map out who are the at risk and affected
Cristiana Salvi:communities that have unmet needs.
Cristiana Salvi:So for long COVID, that might be, children, it also might be working with,
Cristiana Salvi:organizations and groups that might not be the usual suspects in the health
Cristiana Salvi:sector, like groups of people living with disabilities, even though the whole
Cristiana Salvi:point is they should be usual suspects.
Cristiana Salvi:'cause you should be working with, groups who are traditionally left behind in
Cristiana Salvi:order to, adjust their unmet health needs.
Cristiana Salvi:Yeah, I, think we have a really big problem be with even getting
Cristiana Salvi:health authorities to, acknowledge that long COVID, is an issue.
Cristiana Salvi:So we are really starting from quite a way back.
Cristiana Salvi:so how do you think we could implement the ideals that you, realize from an
Cristiana Salvi:international viewpoint to a local one, how can we as long COVID advocates and
Cristiana Salvi:people living with long COVID, try and really wake up our health authorities
Cristiana Salvi:to the fact that we have these needs?
Cristiana Salvi:I do see some positive examples, our work, on long COVID is in partnership
Cristiana Salvi:with the European Commission and the organization for economic,
Cristiana Salvi:cooperation and developments.
Cristiana Salvi:The European Commission has set up a network of experts on long COVID, and
Cristiana Salvi:they also have an open stakeholder group.
Cristiana Salvi:As part of those meetings, almost every meeting that I've been to,
Cristiana Salvi:there's been a patient representative.
Cristiana Salvi:I think that's one practical way.
Cristiana Salvi:Let's say if you were organizing a conference or event to incorporate lived
Cristiana Salvi:experience, there are Other alternatives, that , could be looked into.
Cristiana Salvi:One thing that we saw during COVID is some municipalities
Cristiana Salvi:would set up, advisory boards.
Cristiana Salvi:I would also say, this is probably a good practice from long
Cristiana Salvi:COVID is also, patient groups.
Cristiana Salvi:Patient groups and affected individuals have organized themselves.
Cristiana Salvi:So, in many ways they join together to fill, a need that's not being met,
Cristiana Salvi:And what needs to happen now is actually finding ways to, dedicate
Cristiana Salvi:resources to, continue that work.
Cristiana Salvi:But, The reason why I bring that up is something that I think that's
Cristiana Salvi:been very powerful that we've seen in other examples, most notably, the
Cristiana Salvi:response to , to HIV, and AIDS that,
Cristiana Salvi:having organized civil has made a big difference in terms of, both the access
Cristiana Salvi:to treatments and also, having resources dedicated to research in that area.
Cristiana Salvi:So.
Cristiana Salvi:I think for long COVID because, it's something that is an emerging issue.
Cristiana Salvi:I don't want to say new because many people have been, been living with it for
Cristiana Salvi:a number of years, but it, there's always a bit of a lag between policy responses.
Cristiana Salvi:So for that reason, it would some time to catch up, but I do want to say that,
Cristiana Salvi:there are some existing good practices and I think that's, let's say local
Cristiana Salvi:communities have to see what would make sense for their community, whether it's
Cristiana Salvi:writing to their local health authorities.
Cristiana Salvi:Participation could also be along the lines of improve the patient
Cristiana Salvi:pathway for specific health facility.
Cristiana Salvi:How do.
Cristiana Salvi:you help patients navigate, different services that they need.
Cristiana Salvi:So I, I don't think that there'd be a one size fits all solution, but, there's
Cristiana Salvi:definitely promising practices that can, help, both make patients, voices heard,
Cristiana Salvi:and also, bring their reality into view.
Cristiana Salvi:Thank you, Leo.
Cristiana Salvi:Tell us about MythBusters and the role you played in realizing this initiative.
Cristiana Salvi:thank you for asking about that.
Cristiana Salvi:That's something that's, really close to my heart and I'm, really interested in.
Cristiana Salvi:So the MythBuster series is, something that we worked on
Cristiana Salvi:alongside, what we at WHO Europe call an informal, working group.
Cristiana Salvi:So with different representatives from patient groups affected communities,
Cristiana Salvi:clinicians and rehabilitation specialists, we engaged in a process of finding out
Cristiana Salvi:what are the most reoccurring myths.
Cristiana Salvi:, then we did a prioritization exercise about what is the most harmful from them.
Cristiana Salvi:And, then, WHO experts worked on,
Cristiana Salvi:Debunking the myth.
Cristiana Salvi:So using facts to, set the record straight.
Cristiana Salvi:And we also worked on, Interviewing, people with lived experience who are
Cristiana Salvi:involved in the informal working group in order to match stories with a myth.
Cristiana Salvi:And the, the idea behind this was we want content in an
Cristiana Salvi:online world that can be sticky.
Cristiana Salvi:So you want content that is memorable.
Cristiana Salvi:And, another thing that, I view as important in initiative
Cristiana Salvi:is also starting with facts.
Cristiana Salvi:So oftentimes, rumors spread, and then when you try to dispel them,
Cristiana Salvi:many people focus on the myth when you should actually focus on the fact and
Cristiana Salvi:reminding people about the evidence-based information in order for that to be
Cristiana Salvi:ingrained more in people's memory.
Cristiana Salvi:so as part of the exercise, we also ran a training from a working group on
Cristiana Salvi:what we call the truth sandwich method.
Cristiana Salvi:but it was a really exciting project 'cause , even from when we started
Cristiana Salvi:working on long COVID, we've heard.
Cristiana Salvi:For many, community representatives, that, health workers don't always believe them.
Cristiana Salvi:Sometimes, Also people have misconceptions about long COVID, for
Cristiana Salvi:instance, that it might only impact people who are, you know, compromised
Cristiana Salvi:or if you're young you can't get it.
Cristiana Salvi:So, We did work with affected communities to Find out what
Cristiana Salvi:these myths are and debunk them.
Cristiana Salvi:Another big one that we hear a lot is, sometimes people feel
Cristiana Salvi:like it's only in their Head.
Cristiana Salvi:So in the MythBuster series tried to address that.
Cristiana Salvi:, no long COVID is a real medical condition.
Cristiana Salvi:There are mental health impacts, but, It is not only in someone's
Cristiana Salvi:head, and it's also been great to, see that the MythBusters have
Cristiana Salvi:been picked up, almost globally.
Cristiana Salvi:Like even in Australia, a university we've seen country, patient
Cristiana Salvi:advocates in countries throughout the European region share them.
Cristiana Salvi:So it's also been really rewarding to see that, something that we
Cristiana Salvi:worked on is contributing to a gap.
Cristiana Salvi:Oh, well done on that.
Cristiana Salvi:And you can see the MythBusters on the Long COVID, the Answers website
Cristiana Salvi:on the World Health Organization website and on social media.
Cristiana Salvi:We've shared and tagged those, so thank you Leo, for that.
Cristiana Salvi:why do you think international long COVID awareness month is important?
Cristiana Salvi:it's important for a number of reasons.
Cristiana Salvi:I believe that, awareness is often the first step in, behavior change.
Cristiana Salvi:So if you do want someone to enact a new behavior, first they need
Cristiana Salvi:the knowledge about something.
Cristiana Salvi:But beyond that, awareness is also prerequisites to, dedicating
Cristiana Salvi:more resources for research, and.
Cristiana Salvi:I do view as international Long COVID Awareness Month as an opportunity,
Cristiana Salvi:both for, workers to look into what is the latest, science on long COVID.
Cristiana Salvi:If there's any courses on how you communicate diagnosis with patients
Cristiana Salvi:for other types of specialists like rehabilitation specialists or even
Cristiana Salvi:social workers, it's also an opportunity to look into, , how their roles
Cristiana Salvi:interact with the long COVID community.
Cristiana Salvi:And, then so for, Patients, and people living with long COVID,
Cristiana Salvi:it's an opportunity to, share their realities and how they've
Cristiana Salvi:been impacted by the condition.
Cristiana Salvi:And, that's one of the reasons why I am really pleased to join the podcast today.
Cristiana Salvi:Long COVID Awareness Month does represent, both an opportunity for people with a
Cristiana Salvi:condition, people working to support them
Cristiana Salvi:the, ultimately is a, a moment to draw attention to the fact that even
Cristiana Salvi:though for many people, COVID is over and the pandemic's no longer
Cristiana Salvi:part of their daily realities for millions of people, it still is.
Cristiana Salvi:Oh, thank you Leo.
Cristiana Salvi:That was very well said.
Cristiana Salvi:Thank you for all that you do and for agreeing to be interviewed today.
Cristiana Salvi:we, in the, worldwide community really appreciate that you kept us safe
Cristiana Salvi:during the pandemic and that you're working tirelessly to raise awareness
Cristiana Salvi:and to advocate for long COVID.
Cristiana Salvi:No, thank you for having me and best of luck with the podcast and it's
Cristiana Salvi:always a pleasure talking with you.
Cristiana Salvi:Well, we hope that you enjoyed this podcast special that we work to
Cristiana Salvi:bring you to Mark International Long COVID Awareness month of March, 2026
Cristiana Salvi:with the World Health Organization.
Cristiana Salvi:We at Kojala Medical and Long COVID, The Answers felt it was necessary to shine
Cristiana Salvi:a light on one of the most important organizations in the world and inform
Cristiana Salvi:all of you living with long COVID that you haven't been forgotten, and
Cristiana Salvi:that there are some very talented and dedicated individuals at the WHO working
Cristiana Salvi:hard to advocate for your health needs.
Cristiana Salvi:Please discuss your thoughts on our social media outlets such as Twitter
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Cristiana Salvi:Please rate review and follow us on social media.
Cristiana Salvi:Subscribe to our YouTube channel and visit our website at Long COVID the answers.com.
Cristiana Salvi:All of this really helps to keep our organization going.
Cristiana Salvi:Goodbye for now.