People with a rare immune disorder known as chronic fatigue syndrome (CFS) are calling on the Government for “leniency” around their Covid-19 vaccination, saying some patients have experienced adverse effects after the jab.
They have the support of Otago University Emeritus Professor Warren Tate, who has written a formal submission to the Ministry of Health asking for “compassionate medical exemptions” for some patients. Tate is one of New Zealand’s leading experts on the condition, often referred to as ME or ME/CFS.
It’s thought to affect around 25,000 people across the country and is usually sparked by a viral infection.
Sufferers are left with a malfunctioning immune system and typically experience a debilitating fatigue. This can be accompanied by a range of symptoms, including brain fog, pain in the joints or muscles, headaches and sensitivity to light and noise.
With their immune system weakened, some ME/CFS patients are reporting adverse effects following the Covid-19 vaccine.
One of those is Hawke’s Bay woman Erica Stephens, who says she experienced a relapse of her chronic fatigue after her second Covid jab.
The primary school teacher had recently returned to work after a 13 year recovery from the condition, which began after a bout with Cytomegalovirus (CMV).
“I waited the six weeks and got the second injection and that's when the wheels really fell off for me. I was really tired - I'd come home from work and just come straight home to bed,” she said.
“It's like someone took a big syringe and took out all my energy.”
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Tate, who has studied ME/CFS for many years, says there is a theoretical risk that dysfunctional immune systems will react poorly to the jab in some cases.
However, there was also a risk from Covid-19, and each patient needed to make their own decision.
“My own research in the last 10 years has shown that every patient we've examined - no matter what age or gender or stage of illness - we've shown in every class of molecules that I've looked at, there is evidence of immune dysregulation,” he said.
“Now is the time to resort to compassion and give people medical exemptions when it's clear that's what they need.”
He is a big supporter of the vaccination programme, however, and said the 90 per cent vaccination rate achieved in some cities was “fantastic”.
“I am totally in favour of the vaccination programme, I think the Government has done a fantastic job so far in persuading people to get vaccinated who are healthy and can,” he added.
“We've done so well that we can afford to actually give these people a compassionate response, and not essentially expose them to harm for the good of the rest of the 5 million - that's not necessary.”
A group for those with the condition – the Associated New Zealand ME Society – recently conducted a survey of those with ME/CFS who had been vaccinated, and found responses varied across the board.
President Fiona Charlton said many had already taken the jab.
“ME is highly individualistic and so is the vaccine reaction,” she said.
“We had about 20 per cent of our participants worsen into a relapse and three per cent who experienced a relapse beyond their ME illness to date.”
Others had experienced little to no impact, she said. Around six per cent said they improved after the jab, while 38 per cent remained the same. A further 32.9 per cent reported experiencing a temporary setback but returned to their normal baseline.
Charlton said it was an individual decision for each person, and many did want to be vaccinated due to the risks of Covid-19.
“We feel that for a certain small percentage of people with ME, the exemptions might be warranted, but the only people who can decide that is the patient and their GP,” she said.
The Ministry of Health sent a statement in response on Tuesday afternoon advising people who are concerned to “talk to their health provider”.
They said the Covid-19 Vaccination Technical Advisory Group “will consider” this matter and discuss with the Exemptions Committee. They did not provide a time frame for when this would happen and did not respond to questions from 1News.
Stephens says she’s still in recovery, and believes the Government should have “more leniency“ towards those who are auto-immune compromised.
“It's demoralising… I feel like people need to have all the information,” she said.
“I've got well before and I don't want to take years getting better again; I couldn't cope with that, I can't.”
She’s hoping she will be able to return to work soon and is determined to do everything she can to get better.