More than a year after the Government launched a top-level advisory group on Long Covid, leading experts worry sufferers are still being let down by the health system.

Those concerns have been aired in a series of just-released video interviews, as the Ministry of Health says it’s not possible to quantify just how many people are living with the post-viral condition today.

A constellation of persisting symptoms thought to accompany 10 to 20 per cent of infections, Long Covid can affect nearly every organ system in our bodies – yet there remains no universally-established treatment or cure.

A major study published earlier this year found that one in five participants reported Long Covid symptoms after their initial infection – and that many patients were still struggling to get help.

They also flagged concerns about an apparent lack of understanding of the condition by their doctors – something the ministry has moved to address with clinical guidelines and resources.

Meanwhile, the charitable group ME Support has released its own free comprehensive online tool to help Covid “long haulers” gain a diagnosis, manage their symptoms, and access support.

As part of that work, the group carried out interviews with some of New Zealand’s leading researchers in the space, which have just been published online.

Otago University’s Emeritus Professor Warren Tate – who last year led a study exploring how post-viral fatigue syndromes become life-changing diseases – said Long Covid was “incredibly similar” to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CYF).

But when it came to extending current health efforts targeted at Long Covid to ME/CYF patients, Tate said there’d been “at most a lukewarm response”.

University of Auckland immunologist and Long Covid researcher Dr Anna Brooks said patients were also facing inequitable access to care.

“While some report receiving appropriate care others are left with inadequate or even outdated and potentially harmful advice,” she said.

“Furthermore, the inability of some individuals to afford ongoing attempts at seeking care, combined with others giving up on their pursuit, is not indicative of a lack of demand for care.

“Instead, it highlights a systemic failure that is letting us down.”

University of Auckland immunologist and senior researcher Dr Anna Brooks. Photo / Supplied

Brooks was also concerned about a perception that Long Covid was linked more to Delta than Omicron, when studies had indicated the condition could occur irrespective of the initial variant of infection or vaccination status.

“Indeed, surviving one infection unscathed does not mean you will be out of the woods with getting Long Covid,” she said.

“It might be a second or third exposure that triggers this illness. It is likely that Omicron and its subvariants will cause the greatest burden of Long Covid cases in our country.”

Victoria University epidemiologist Dr Mona Jeffreys, who co-led New Zealand’s largest Long Covid study, said few of the patients involved in it had received a referral to secondary care.

“Even when people did have a referral made on their behalf from their primary care provider, we had lots of stories of people whose referrals were not accepted.”

One patient, who developed Long Covid after an infection in February last year, told the Herald they’d had to switch from her doctor of 12 years to get the help she needed.

“I feel sad that I had to leave ... but they couldn’t help me, it was too hard.”

Another long-hauler spoke of her struggles finding care.

“When we have got a health system set up in giving answers rather than having curiosity, then if you don’t fit the box and they don’t have an answer it’s quite a difficult place to be,” she said.

“It’s a little bit like having a mental illness or some other invisible disability.”

ME Support vice-president Kate Duder said her organisation – whose membership has doubled over recent years – was grateful for the steps the Government had taken so far, “but there still needs to be more”.

While the ministry had set up a Long Covid expert advisory group and produced clinical guidelines, Duder said its response team was disbanded in November and there’d been “no response” since.

“We seem also to be looking at research from overseas to justify what we do here in New Zealand, however, we need to look at what the actual need is here given our unique environment and the ongoing risk from subsequent Covid-19 infections,” she said.

“New Zealand was once the world leader in its Covid response. As the world still grapples with how to live with the virus, there’s a real opportunity for us to lead the world in how we support those battling the long-term effects of Covid.”

Duder listed a raft of areas where her group wanted action.

That included setting up a working group between Te Whatu Ora and the ME/CFS and Long Covid community, and commissioning a Government review to measure the scale of the burden, investigate barriers and enable more training for clinicians.

It also called for more funding for research and support groups, and for ME/CFS to be formally classified as a disability.

While it’s been suggested that hundreds of thousands of Kiwis could be affected, a ministry spokesperson told the Herald that, at this stage, it wasn’t possible to determine the precise number of people with Long Covid.

The ministry was “actively supporting” clinicians to identify and manage Long Covid by providing guidance, while also giving advice for those with the condition and their carers.

Asked if more clinical training was needed, the spokesperson said ministry was “developing our awareness” of Long Covid, and that recently-implemented clinical coding would help to better understand its impact here.

“This will aid in any ongoing planning for services and training.”

Because Long Covid involved a wide range of symptoms that could involve various specialist care or treatment, GPs were “well placed” to work with their patients and refer them if needed.

Royal NZ College of General Practitioners medical director Dr Luke Bradford acknowledged that GPs continued to face challenges with patients presenting with Long Covid symptoms.

“But the frustration there is not that it’s a problem to diagnose ... it’s actually that the treatment options aren’t great, and the research is still conflictory on where to go on there.”

The Tauranga GP expected that would improve as more studies came in.

As it stood, the current approach to treatment came down to helping patients to recognise their symptoms, and to manage them in a way that was best for them, he said.

“But that’s frustrating when you’re living it every day.”

“There’s no support” A mother’s desperate plea for those suffering from long covid.

An Auckland mum is putting out a desperate plea for New Zealand to introduce clinics specialised for those suffering from long covid.

A few months ago, the Herald spoke to Viv Allen about her daughter Rose, who is suffering from Long Covid.

When the Herald spoke to her yesterday, Allen was pleased to report Rose’s condition was on an “upwards trajectory” but said the condition is still “hidden behind a door” and there needs to be more support.

“So she started improving a little, which is fantastic, her sensitivity to light and sound has diminished and she’s able to talk a little bit more and she’s able to move a little bit more,” Allen said.

“She still gets exhausted and quite often it’s like she’s great one week and then the next week not so good, but the trajectory is improving, it’s still going to a long road.”

Now Rose is on a “rehabilitation path”, it is obvious to Allen that more than ever New Zealand still does not have the facilities or trained professionals to help those suffering like her daughter.

“There’s no, there’s no support, you know, really for financial support except for the unemployment benefit, which seems weird to me,” Allen said.

“The mental health team have been helping Rose and they’ve suggested that she have Cognitive behavioural therapy for a psychologist, I’m trying to arrange it and it’s really difficult.

“We’re still paying, we’re still, she has a physical therapist three times a week”

Allen wants similar support to those in Australia or the UK, who have specialised long covid clinics.

“You get physical therapists, psycho psychologists, psychiatrists, doctors, a whole group of occupational therapists in a team that work in a team environment who build up their experience so that they can help their long covid patients,” Allen said.