Speaker:

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

Cristiana Salvi:

or X Blue Sky, the website, blog, Instagram, Facebook, TikTok, or LinkedIn.

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.