A Timaru mother is pushing for people living with chronic fatigue syndrome (CFS) to be given a COVID-19 vaccine exemption after she and dozens of others reported adverse reactions following the jab.
The woman, who wished to remain anonymous, said she is absolutely pro-vaccination and takes the virus seriously.
But she wants the estimated 25,000 Kiwis with myalgic encephalomyelitis (ME) or CFS, some of whom have suffered debilitating reactions, to be exempt from getting it.
It's a view backed up by ME/CFS expert and emeritus professor of biology Warren Tate, who has had reports of adverse reactions from close to 100 people with the condition.
He says while the vaccine is brilliant and the Government's overall COVID response has been fantastic, Kiwis with chronic fatigue are being overlooked.
He first raised concerns over the impact of vaccines on those with the condition last year, contacting the Ministry of Health, Director General of Health and the Prime Minister's Office to suggest they be given a medical exemption.
But Kiwis with the condition are yet to receive one - and in the meantime, they're suffering.
'My GP said it was just anxiety'
The Timaru woman contacted Newshub after suffering debilitating side effects from her vaccine. She said she had no cause for concern when she first became eligible so she got vaccinated against COVID.
But after suffering horrendous side effects - a quickened heart rate, extreme muscle weakness, dizziness, exhaustion, nausea, body pain, mental fatigue, migraines, night sweats and uncontrollable shaking - she decided to visit her doctor.
She expressed concern it could be related to the vaccine because she has chronic fatigue, but her doctor shut her down.
"My GP put it down to anxiety. She basically gaslit me the whole appointment saying I was 'just having panic attacks, it was just anxiety'. She told me I had to get it out of my head that it had anything to do with the vaccine."
The woman said believing her doctor, she got her second dose and a booster - but the impacts were again debilitating. More than a month from getting her booster, she's still suffering side effects.
"It was an incredibly traumatic experience. It was incredibly, incredibly devastating. I had gotten to a point where, you know, I was able to go to work part-time and involve myself with my school sports like basketball and things like that.
"To have that ripped away so suddenly, and to see this is likely to go on for months and I don't know where I will be at the end of it - you know, whether I'll be living at 80 percent of what I was - it has been completely devastating."
Her recovery process might be a long one. Alongside numerous medications, she's taking vitamin D supplements and getting weekly vitamin B12 injections in the hopes they help.
She says people with chronic fatigue should be exempt from mandatory vaccination and believes those who got the vaccine and are suffering need more support.
At the very least, she wants the Ministry of Health to inform chronic fatigue sufferers of the risks of taking the vaccine.
"I wasn't aware prior to going for my first vaccine that I was likely to have some kind of reaction to it. There just wasn't any information out there at the time."
She says she might not have gotten vaccinated if she knew the toll it would take on her.
"I definitely think there needs to be more awareness out there just for the general community, but also the medical professionals as well.
"Had I known what I know now, I would have changed absolutely everything I had done. Maybe not even gotten the vaccination to start with.
"At the very least I would have made sure I had support around me… I absolutely reckon there should be an exemption for chronic fatigue sufferers because the way I am feeling right now… basically the thing that was supposed to prevent me from getting severe COVID has now left me feeling like I have permanent COVID."
Despite her personal struggles, the woman stressed none of this means she is anti-vaccination. In fact, she told Newshub chronic fatigue sufferers who are unvaccinated are vulnerable and rely on those around them to get vaccinated to protect them.
She also condemned the protesters who took over Wellington last month, saying extreme anti-vaxxers are making it difficult for people with legitimate reasons for an exemption to be believed.
"The huge majority of them are so loud and aggressive and violent and I felt like they were there for all the wrong reasons. It does definitely feel like we can't be heard over their voices," she told Newshub.
"I'm still at risk of COVID, so I will be relying on everyone around me to take it seriously and be vaccinated."
She also criticised the protesters for their lack of masks and social distancing, saying it put people like her at risk.
Why can chronic fatigue sufferers react badly to vaccines?
Professor Tate said bad reactions from chronic fatigue sufferers don't make the vaccine bad or unsafe. He said it's a terrific vaccine.
"I am an RNA biologist by training so I think the Pfizer vaccine is a fantastic vaccine for healthy people."
But he said chronic fatigue sufferers are in a unique and vulnerable position.
Tate said the immune system of someone with chronic fatigue is constantly perceiving danger and cannot switch back to a normal, healing mode.
"What we know about ME/CFS is that the immune systems in patients are in overdrive," he explained.
"This is where a theoretical risk comes from the vaccine. It's almost like people [with CF] are sort of on the edge of a cliff. And if the immune system is challenged, in this case by a reactive vaccine, some of them fall over the cliff."
Tate said this reaction can also occur from the virus, meaning while they aren't immunocompromised, chronic fatigue sufferers could be more at risk of long COVID, or the virus could cause their CF symptoms to flare.
Tate said nearly 100 people with chronic fatigue have contacted him reporting adverse reactions.
He was asked to write an evidence paper on the issue for the Ministry of Health, and had a long meeting with the chair of its medical exemptions committee on his findings.
But there still hasn't been any change - and Tate can't understand why, given there are only around 25,000 in New Zealand, many of whom are already vaccinated.
"I thought vaccination campaigns, you tried to get herd immunity 95 percent - so the individuals were protected and the community was protected, but those among our community that couldn't take the vaccine, we're protecting them.
"That doesn't seem to be part of the mindset. It's almost like if you say anything against the vaccine you're somehow going to compromise the campaign. But the campaign has been so successful that it doesn't make sense to me."
New Zealand has high vaccination rates, with 96 percent of the eligible population having one dose, 95 percent having two and 72 percent fully vaccinated including a booster shot.
Tate said many ME/CFS people live "fragile lives" and are already very sheltered, meaning they don't pose a huge risk.
"They don't go to events, they don't go to bars, they don't go to places where they are at risk. They are semi-isolating anyway and they have very measured interactions in the community.
"They're at risk of course. The bottom line is if you're unvaccinated you certainly are at risk of getting a more serious illness, there's no doubt about that. So they have to really look after themselves - and they do, they do look after themselves. It's been a really difficult issue."
He said along with a medical exemption, the Ministry of Health needs to acknowledge chronic fatigue sufferers could be harmed by the vaccine.
"The first thing would be to have a public acknowledgement that this vulnerable group is suffering… so their clinicians believe them."
Tate also felt anti-vaxxers were hurting chronic fatigue sufferers' ability to get an exemption.
He stresses he's pro-vaccination and thinks New Zealand's pandemic response on the whole has been fantastic.
"Certainly don't take anything I have said as being critical of the overall Government COVID response, I think overall I've been totally supportive."
The Ministry of Health told Newshub it has a "robust temporary medical exemptions process in place".
"Applications are considered against the temporary medical exemption categories. The exemption process is overseen by the temporary medical exemption panel. The panel includes medical and nurse practitioners, with relevant clinical expertise. The panel also consults with appropriate external experts as required," the spokesperson said.
"People with ME or CFS are encouraged to have a conversation with their primary care health practitioner, to discuss vaccination options."
