From Olympic hopeful to Long Covid: Oonagh Cousins’ story

Emily Kate Stephens (44:27): How did you come to actually start working with Long Covid Support? How did you decide to make your mission something that is entrenched in the experience that you've gone through.

Oonagh Cousins (44:37): Yeah, interesting. I started off with the media interviews from the first one, I think was October 2020. Something I haven't sort of spoken about is my friend had M.E. Before this. So when I got sick, I wasn't surprised that there was no health care or no help out there, which I think really shaped my experience too, because I think it's very traumatic when you're not getting better and you're not getting any health care, and you don't expect it to be like that. So I was doing these interviews, and I was realizing, gosh, nobody knows that there's no health care for these conditions. And I realized also, oh, my goodness, there's all this stigma around these conditions, and the fact that I'm an athlete is going against this narrative. And I hadn't realized that was a thing. This just shows the kind of bubble I was in. You know, people don't care. Were just like, lazy, or whatever

Emily Kate Stephens (45:22): Lazy, depressed, anxious?

Oonagh Cousins (45:22): Yes, he's like, and then it would get better quickly. And so I was like, I felt responsibility. I think I have got to get my story out there. And I got a lot of messages back in those early year, two years of the pandemic. Just thank you so much for making me not feel like I'm going crazy, basically, and I wasn't doing much at home, so I felt like the least I could do was just do these interviews. And then I got interested in comms, like it can convey information. I didn't realize that was something I could do. And I enjoy doing this. And then also, I think I got, like, learned about the history and everything, and I was progressively more pissed off. NICE guidelines, graded exercise therapy, yeah, injustice, yeah. So jarring against my experience of being an athlete and rest being valued. I couldn't believe that doctors hadn't figured out that rest is good, like what

Emily Kate Stephens (46:11): Doctors or society we are in this live in a society that is so

Oonagh Cousins (46:15): It's so anti rest

Emily Kate Stephens (46:16): The emphasis is on being busy.

Oonagh Cousins (46:19): I could see that, with my background, was a good messenger for that. And yeah. So then there's, it's like the same thing with rowing. I get invested. I get curious about, how do we make progress? And actually just kind of shifted from rowing into like this space, basically, and comms are like advocacy. And I just was trying to learn more, and trying to be in places where I could learn more about, how do we make change? And I like learning stuff, and then disseminating it. And I realized I like comms, and I like doing that, and I think we need better comms in this space. And so, yeah, rest is history.

Emily Kate Stephens (46:56): Since you've been working with various charities, you've been working a lot with different healthcare professionals, experts, do you feel like we've had any shift? I mean,

Oonagh Cousins (47:08): I'd be interested to see what you guys think on this, but I do think progress has been made. It's just happening far too slowly for the people who are sick now, there is the ME/CFS delivery plan, massive disappointment, but that is still a step forward. The government has talked about severe ME, right? Very severe M.E. There are researchers who are doing work. We are very, very slowly making progress. And I think Long Covid did give these conditions a credibility that they didn't have before, but there's still it's so entrenched a whole generation of doctors have been taught about graded exercise therapy, undoing that is just such a hard problem to solve, and the rate of the research is just too slow for us to get the treatments that people need tomorrow, right?

Emily Kate Stephens (47:54): Do you feel like we've broken out of our bubble at all in terms of actually reaching the wider society?

Oonagh Cousins (48:02): Not really

Emily Kate Stephens (48:03): Because we're so inside it?

Gez Medinger (48:06): I had a thought on this. So I was at last year, I went across to Brussels and spoke at a forum that was happening in the EU Parliament about Long Covid, and this was the first, to my knowledge, first conversation on the subject at the EU Parliament about it. And the figures that are generally accepted now for Long Covid are, it affects between three and 6% of people have had Covid, and most people have had Covid. So that's kind of three to 6% of most people. And what kind of staggered me was, this is huge. Three to 6% of the people in a country is a really huge number. What would that number have to be for it to be taken seriously?

Emily Kate Stephens (48:49): Three to six is huge. And the impact on healthcare systems and the actual GDP of

Gez Medinger (48:58): Well, 65 billion euros in salary lost in Germany alone. So there's just a random number just pulled out of it, and that's just salary, and that doesn't include the healthcare cost. It doesn't include the support cost, social welfare costs. You'd think, if a country is losing 65 billion euros of GDP, let's throw maybe 1 billion at it, maybe, let's be wild. Let's throw two. But that doesn't seem to be happening because it's not politically expedient to do so, because by the time you threw that money in and got any answers, you're going to be well out of power.

Emily Kate Stephens (49:26): But I think there's also something to be said for the fact that we're still a lot of people are invisible to a degree, because you can't get help, because it's not really something that's going through the healthcare systems still and all the social care systems, people are being looked after by their loved ones. You know, a huge thanks to everyone who is a carer of people with these conditions, because it's a huge burden for people to bear, so they're not reliant on the necessarily government support, yet that down the line we might start seeing,

Oonagh Cousins (49:59): I totally agree. And I think other thing that I've thought quite a lot about is comparison to HIV and AIDS, and they the order of magnitude, was an order of magnitude less, right in terms of the numbers, it was so much fewer. But the thing that we need to consider is like organizational capacity, which is the gay community, because of their history, had really effective organizations. They had big organizations which had systems, they had funding. They could mobilize people that actually made HIV AIDS in America, it made an election issue, even though far fewer people were affected Covid. Long Covid is a new illness, and everyone is dispersed throughout the country. They don't know each other, they're not organized. We can't mobilize, and to mobilize people takes just resources time which people with Long Covid don't have.

Emily Kate Stephens (50:48): That's interesting, isn't it? That sense that it was with HIV and AIDS. It was a community, whereas this is so scattered, so many people,

Gez Medinger (50:56): It still took 20 plus years there didn't it to develop effective treatments.

Oonagh Cousins (51:00): Yes, that's but like that organizational capacity that gives you power, which the Long Covid community does not have that power, we are really easy to ignore. And there's all these competing issues. Look at the news, at the moment, right now, right? The thing with making political progress is you have to put pressure on politicians. And they're not under pressure. They're not under pressure. They're under pressure from other things.

Emily Kate Stephens (51:19): We've got huge work to try and develop, you've done a lot of work into actually, what do we need to develop in terms of social sciences, to actually help people, to support people. And as a society, we need to keep pushing actually give people support, to help people, to believe people, to listen to people and to understand people, because we are still in a situation where the majority of doctors don't have any answers, don't have anything to offer for people with these conditions,

Oonagh Cousins (51:59): I totally think part of the reason these illnesses, like ME/CFS, hasn't been more progress being made is because of people who need most motivated do something, are least able to and, you know, the people who care don't have money, And the people who don't care do have money. Yeah, there's a structural obstacle.

Emily Kate Stephens (52:16): But also, you talked about that sense of community. It is a community that people want to support. Want to come together and support each other, and that's not to say that our loved ones don't want to come together and support us, but actually, and if it's immediately facing you're doing so much work anyway, just to care for that person that you don't have the capacity to go outside and be political, Yeah, amazing. So much. Oonagh, thank you for sharing your story and Gez, thank you very much. We look forward to talking to you all next time. Thank you for listening to Make Visible. Please do like follow or subscribe to listen to our next episode where we'll be uncovering more insights into complex chronic illness. This was brought to you by the team at Visible, a group of scientists and engineers whose lives have been affected by energy limiting health conditions, we're building wearable technology that's helping 100,000 people measure and manage their complex chronic illness. To find out more about what we're working on and how Visible could help you visit our website at makevisible.com

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