A survey of New Zealand Covid-19 long-haulers reveals the "heart-breaking" ongoing battles faced by the group which feels abandoned by New Zealand’s health system.
It comes as an increasing number of people around the globe are left battling lingering health issues from the virus, long after being deemed “recovered”.
Common ailments experienced by Covid-19 long-haulers are brain fog, fatigue, coughs, chest and joint pain, and shortness of breath - among a host of other issues being reported.
Medical specialists are so far at a loss as to how to treat people still battling lingering effects from the virus, months after first being infected. A ward at Mount Sinai Hospital in New York has been set up specifically to treat long-haulers – and the waiting list there keeps growing.
Here in New Zealand, one of the first people in the country to contract Covid-19 is spearheading the charge to get help for people trying to get treatment and research into long Covid on our shores.
Jenene Crossan battled Covid-19 back in March after catching the virus while in Europe.
She tested positive upon return to New Zealand and isolated in a campervan before spending a brief time in hospital when her condition worsened.
Some eight months on, she is still struggling with the damage Covid-19 left on her body and is advocating for other Kiwis left in the same position.
She says New Zealand needs to follow the example of other countries when dealing with the virus’ lasting damage.
“In the UK they’re going about it the right way, 40 clinics are being set up in there to track people who have had Covid-19 and ensure they are getting the specialist care they need, they are not expected to self-advocate like here in New Zealand,” Crossan says.
She understands that it’s really hard to get funding and be heard, as there is such a low number of people who’ve had it in New Zealand.
“But, we are spending billions of dollars to keep the virus out of New Zealand how come we aren’t helping those most impacted by it?”
In a survey conducted by Crossan on a New Zealand Covid Long-Haulers Facebook group containing nearly 100 people, 79% reported they first became unwell in March of this year.
In total 95% of respondents stated they’re suffering from a post traumatic stress disorder (PTSD) of some kind, they do not feel recovered and that their mental health has taken a beating.
One person stated they “couldn't function for seven months” and are “slowly improving now but breathing has been different and still achy under ribs with chronic chemical sensitivity”.
Another said they had, “months of exhaustion and randomly recurring symptoms. Months of fear and confusion. Struggling with day to day basics and worried about the future.”
Crossan says the responses to her survey were "really heart-breaking".
Many people outlined struggles with the health system, including multiple GP visits and expensive attempts at self-treatment to no avail.
Crossan has been talking to medical experts at the National Institute for Health Innovation in a bid to make GPs more aware of the condition around the country and come up with better treatment protocols.
She says she has spent $4500 on treatments for herself over the last two months alone.
“I am really fortunate to be able to afford that, but there are many in my group who cannot, and it should not come down to privilege whether you can be well in New Zealand or not.”
There has also been talk of getting access to T Cell testing to help those battling symptoms who haven’t tested positive confirm whether they had Covid-19.
It comes as a number of people in New Zealand displaying long-haul Covid symptoms have been diagnosed by doctors as likely having had the virus without having a positive test.
T Cell testing would also show whether those who tested positive for Covid-19 have long lasting antibodies in their system which would aid research.
Dr Anna Brooks, cellular immunologist at the University of Auckland, has been researching how to help Covid long-haulers here.
“We have a unique situation here in NZ in that we have eliminated the virus, which gives us the opportunity to focus our research efforts into helping our Long Covid sufferers," she told 1 NEWS.
"Many of those identifying as 'not recovered' have never tested positive by PCR or clinically available antibody (serology) tests.
"Specialised immune, or more specific tests, available in research laboratories, may at least provide some certainty and indeed confirmation of infection, while also giving us the opportunity to dig deeper into the immune response these individuals have experienced.”
Infectious disease and respiratory physician Dr Michael Maze - who lectures at Otago University - says GPs here have the skills to help once the condition is recognised.
"Perhaps the most important thing healthcare professionals can do is acknowledge the problem and walk the recovery journey alongside their patients.
"GPs have these skills and can help people with long-Covid. They manage the recovery of people from many severe and debilitating infectious illnesses already," he told 1 NEWS.
Crossan made a plea to the Government for help in a video posted to her Instagram account.
“This is no longer about raising awareness of long-Covid, it is recognised widely now, it's about asking the Government to create a programme to offer support and do it immediately without further delay, to be world-class in their response to the most impacted people of this virus,” Crossan says.
Ministry of Health responds
A Ministry of Health spokesperson told 1 NEWS it began collating data on the longterm effects of Covid-19 in June of this year.
"Guidance for the rehabilitation of people with or recovering from Covid-19 highlights the complexity and potential long-term needs of people recovering from Covid," the spokesperson said.
"The Ministry continues to gather more information on Covid-19 and the short and long-term effects the disease has on cases here in New Zealand. We will be sharing updated findings with the health sector early next year."
The Ministry of Health goes on to say that anyone experiencing long-haul Covid-19 symptoms is to work closely with their general practitioner on a programme of heath measures that will address the various ongoing symptoms a person is experiencing.