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One in five New Zealanders are experiencing Long Covid symptoms, a survey finds, as the virus continues to cast a long shadow over the country.
New research shows as many as 300,000 New Zealanders could be battling the post viral illness.
But patients and experts say there's no clear pathway to access treatment and are concerned for a health system that's already stretched thin.
Daniel Freeman has been suffering from Long Covid for several months and things are not getting any better.
He is now reliant on an inhaler for the first time since childhood and battling debilitating brain fog.
"Some days I'm bedbound, some days I'm house bound or couch bound... for instance, I could be sitting down, my resting heart rate could be somewhere in the late 70s. As I stand up and just stand completely still, within five to 10 minutes of standing up, my heart rate will be 130 plus."
That forced him to leave his job in healthcare because of its physical demands.
While he was grateful for some financial support from Work and Income, he had to make some difficult decisions.
"I've had to sell my home, I've moved back in with my parents in my mid-40s and I'm living with my parents who are in their mid-70s and basically a lot of the time they have to take care of me."
A Herenga Waka Victoria University of Wellington study surveyed just under 1000 people, and more than 20 percent of them reported Long Covid symptoms.
About half of them said the healthcare they received was inadequate and they felt misunderstood.
Last year the Ministry of Health released guidelines for doctors to help diagnose Long Covid, but Freeman said this had not improved patient care.
"When I've queried being referred to a cardiologist, I've basically just been told: 'Listen you'll go, you'll have all these tests, a few of them will come out abnormal, but they'll basically just say we don't know what's going on, but you seem okay, see you later'."
Physiotherapy can help
For some patients, physiotherapy was beneficial for breathlessness and fatigue.
Lecturer at the New Zealand school of physiotherapy Sarah Rhodes said a lot of clinics were treating patients.
"Once there's an awareness that people are finding treatments in these services, the demand is going to increase and there just isn't the resources available."
She has called for urgent funding for Long Covid patients and dedicated Long Covid clinics nationwide.
"At the moment there is an absence of any cohesive response, so we are seeing some services being set up, but they're very ad hoc, they're predominantly in the private sector, which comes at a cost."
The Ministry of Health recommended a multi-disciplinary approach for Long Covid, with a range of health professionals from psychologists to occupational therapists.
But Dr Anna Brooks who is studying Long Covid said there was no clear pathway to access treatment for patients, instead the onus should be on the healthcare system.
Dr Anna Brooks says the healthcare system should be responding. Photo: RNZ / Nick Monro
"The multidisciplinary team come to the patient or someone assesses them for what type of medical care they might need rather than the patient needing to potentially book loads of different appointments with uncertainty."
While there was still so much unknown about Long Covid, patients may not get any answers.
"You know, post-viral illness is not part of medical training. There isn't a doctor trained; there's not a specialist to deal with these conditions, the specialists who are experts in this, they took it upon themselves to understand."
Checkpoint has approached Te Whatu Ora, Health New Zealand for comment.