Photo: FANATIC STUDIO / SCIENCE PHOTO L
This week, the Royal Commission of Inquiry investigated the response to Covid-19 has made 39 recommendationsincluding that ‘normal’ life can continue as much as possible during the next inevitable pandemic.
That wasn’t music to the ears of many people with long Covid-19.
Last week, RNZs Saturday morning interviewed British long Covid specialist Dr Toby Hillman. A text message sent to RNZ in response claimed New Zealand was “one of the worst countries” to live with long Covid.
Patients feel abandoned by their doctors, and despite this, little or no research is funded, critics say an estimated $2 billion annual cost.
Rohan Botica and Dr Anna Brooks are two of the founders of DysImmune Research Aotearoa, which focuses on research into immune dysfunction to help understand, diagnose and treat post-acute infection syndromes.
Brooks is a senior research fellow at the University of Auckland’s Liggins Institute and principal investigator for DysImmune. Botica is an informal research associate at the Liggins Institute and a lived experience researcher for DysImmune.
Botica has suffered from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) due to a number of serious infections, and after being diagnosed in 2021, couldn’t believe there were no treatments for it yet.
His need to go to the gym to stay healthy only made matters worse, he said Saturday morning.
“I was like, ‘I feel a little sick, I have a little flu-like body feeling, but I really want to go to the gym and this is what makes me happy and I’ve just got to push through and get the other reach the side,” and I think I probably did quite a bit of damage in the long run.
“Because it’s not a matter of mentality. Your body has physical limitations that I went beyond.”
He said people who don’t have CFS are mistaken if they think it just meant they were a little tired.
“When you tell people that, they say, ‘Oh yeah, I get tired sometimes too,’ and you just say, ‘Yes, unfortunately it’s not the same.’
“It’s linked to a lot of the stigma around this and other invisible diseases where people look at you and say, ‘Well, you look good, you look healthy,’ but they don’t see what’s going on behind the scenes.” happens. You look good, you look healthy.” maybe I’ll see myself out and now I have to spend three days in bed trying to recover from the outing.
Rohan Botica and doctor Anna Brooks.
Photo: delivered
Brooks said she learned early in the pandemic that Covid-19 would cause a lot of long-term damage.
“What we saw happening globally was the coordination with the ME/CFS community, where it was almost as if the patient groups were waiting in the wings for this to emerge. Like, yeah, we knew this would happen, we know. that viruses can do this.
“And so I kind of played a role from the beginning, this overlap and the urgent need to do something about this… There’s been an absolute tsunami of research now, and it’s not without challenges – it’s that whole overlap of still fighting the disbelief that this is a physical condition.”
Botica’s blood tests were normal despite his fatigue.
“Just because your blood tests are normal doesn’t mean there’s nothing wrong,” Brooks said. “It just means we don’t have the tests yet.”
Only in recent days, she said, had a test emerged that could detect biomarkers of long Covid. But it came long after many people decided they wanted to put the pandemic in the rearview mirror.
“We’re coming out the other side of the kind of political position, if you will, and the lack of resources to really continue to focus on this. It’s a challenge when everyone doesn’t want to hear the word Covid, let alone long Covid and its long-term consequences.”
She noted that the recent Royal Commission report contained few recommendations on the long-term effects of Covid-19.
“People will say, ‘Oh, all those things we went through were devastating and that’s why we shouldn’t do them in the next pandemic.’ And that’s just the wrong message. Definitely, the wrong message.
“That doesn’t mean we couldn’t do some aspects differently, but that’s called hindsight, right? So we definitely need to… learn lessons from what we’ve been through, but there are still things missing.
“And one of the aspects that I don’t think has been talked about in detail is the long-term effects in the sense that we need to understand our population here in Aotearoa, we need to know what the long-term effects are on us. Are.
“And the only real way to do that is through monitoring and tracking, and that includes specimens, blood samples, understanding the before and after of a pandemic… We have no way of knowing what the next decade will be of the consequences of this specific pandemic. The pandemic will affect health. So I feel like this is a blind spot.”
Botica said he only saw long Covid mentioned “once or twice” in the report, “purely in the sense of ‘some people are still struggling with long-term effects like long Covid’ and nothing else”.
He said many doctors, without knowledge of long Covid-19, would wave away patients complaining of fatigue – especially if they were Māori, Pasifika or women – with recommendations that they lose weight or stop being ‘lazy’.
“This affects so many people, but they don’t link it to Covid. Even if I can draw a straight line from your Covid infection to your symptoms and you have knowledge in this area, you might question yourself and say, “Oh. Maybe it’s not that serious. Maybe it’s something else.’”
Covid-19 is caused by the SARS-CoV-2 virus.
Photo: 123RF
It wasn’t yet clear how many people who contract Covid-19 will experience a long bout of Covid-19 – one in 10 is a “middle-of-the-road” estimate, Brooks said, with the actual figure difficult to know because people report their symptoms did not associate. with their previous infection.
It can take months for symptoms to appear, even after what appeared to be a full recovery.
“The virus is still with us and it’s like every infection is a roll of the dice. We don’t know if your next infection could cause this… You can recover from your so-called acute symptoms and considering you actually could You can also get long Covid-19 from an asymptomatic infection. So it’s very difficult to determine.”
Many people could now also be contracting Covid-19 without realizing it, as the government ends financial support for rapid antigen tests.
Brooks said anecdotal reports of people developing diabetes, experiencing heart palpitations and seizures after contracting Covid-19 had been confirmed in recent studies.
“There is now a long list of studies showing that SARS-CoV-2 can cause the onset of type 2 diabetes and also type 1 diabetes. This virus is a huge immune damage.
“And because we’ve seen this virus come through in waves and on a pandemic scale, you can start to draw the line, right? You can start to see that and identify, you know – these are long-term consequences. “
Botica said he was not aware of any specialists or clinics Kiwis could go to if they were suffering from long-term Covid, or suspected they were suffering from it.
“We obviously need GPs who are more understanding of this, we need GPs who have updated information so that when someone presents to one of their clinics they can actually point them in the right direction… we need some urgency to fund biomedical research because that will move things forward, and we’re just not seeing it.
“I would say every MP has a friend or family member who has been affected by ME/CFS or Covid for a long time, so there should be some sort of bipartisan effort to, you know, dedicate some resources to us helping people get out . of their suffering.
“Some people had this for decades. They suffered from it for decades. It’s more of a bipartisan agreement to bury it and ignore it.”
Botica said some New Zealanders may have found it easy to brush off the long-term effects of Covid-19 because, unlike some other countries, we did not see “bodies lining the streets during the acute phase”.
‘If we had had a heavier burden here and we had not been vaccinated before everyone became infected and more people had Covid for a long time, I cannot assume that the government would have intervened. The previous government didn’t really do much either. “
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