'I feel absolutely worthless': Chronic fatigue sufferers can't get Covid-19 vaccine exemption despite expert support

Alenna McLean had a severe flare up of her chronic fatigue syndrome (CFS) after she had her first Covid-19 jab in July.

She is one of thousands of Kiwis with CFS who have been unable to obtain an exemption, despite expert advice warning some of them to avoid the Pfizer vaccine.

Getting “lumped in with anti-vaxers” under the traffic light system, despite the risks she took getting the first dose, has made McLean angry and despondent to the point of considering suicide.

“I feel like my life has been taken. I feel absolutely worthless. And I see no end in sight,” McLean said.

READ MORE:* Covid-19: Chronic fatigue syndrome sufferer wants illness added to vaccine exemption list * Covid-19: Third vaccine dose criteria 'very restricted', doctors say* Covid-19: Christchurch nurse urges others to get vaccinated despite suffering reaction

“I stayed quiet while the Government got the vaccination numbers up; I didn’t want to go public to avoid fuelling the anti-vax movement. But now I am done. I am tired, I am sick, I am angry and intensely sad.”

CFS, also known as myalgic encephalomyelitis, is a condition that causes dysfunction in the immune, neurological and endocrine systems, leading to extreme fatigue even after rest.

About 25,000 people live with CFS in New Zealand.

Very few people in Aotearoa cannot have the Pfizer vaccine for medical reasons, with only eight medical conditions considered serious enough. The Pfizer vaccine has been proven safe for the vast majority of people.

In November, University of Otago professor Warren Tate urged the prime minister and director-general of health to allow those with CFS to be exempt from the vaccine. Under current guidelines, CFS patients can only request an exemption after they have had a severe reaction from the first Pfizer jab, with confirmation from a specialist they should not get the second. Previous history of serious reaction to other vaccines is not taken into account.

Tate told Stuff people with the condition had a dysfunctional immune system, which meant vaccines could be dangerous for some of them. International surveys of people with CFS showed one in four had adverse reactions to the vaccine, he said. There was no way of knowing in advance who would be affected.

Immunisation Advisory Centre medical adviser Joan Ingram​ said she had been working hard for several weeks to introduce a lower dose of the Covid-19 vaccine for people with CFS.

“We are trying to get these people protected. An exemption doesn't stop you from getting the virus.”

Those with the condition may face long-term health challenges if they caught Covid-19, and there was evidence some people with CFS experienced a worsening of their condition with the Pfizer and Astrazeneca vaccines, she said.

“It’s a dilemma for people with CFS because obviously they realise that the vaccine is useful, but they might worry about the impact it could have on their health.

“We need to have compassion for this difficult situation people are in.”

McLean, who is pro-vaccination, was diagnosed with CFS 14 years ago. A single mother of 19-year-old twins, she has struggled her whole life on the benefit as she is unable to work due to her condition. Despite her health challenges, McLean was this year volunteering at a rest home, taking part in Extinction Rebellion protests and had started an online editing course.

But since getting the Covid jab, her CFS had become severe, with extreme mental and physical fatigue, migraines, nausea, and tremors. The first month after the jab, she could not get of bed for more than three hours a day or stand for more than five minutes at a time. She could not cook, do laundry, wash her face or walk up the stairs in her home.

Her limbs were so painful and heavy she could barely hold her hand up long enough to brush her teeth. She became confused, lost immediate memory and taste. She had vertigo to the point of having to hold onto the walls to walk. Her heartbeat became irregular, with palpitations and pain. Her brain felt like it was buzzing. Stuff talked to McLean’s GP, who confirmed her story.

McLean’s GP reported the adverse reaction and advised her not to get the second dose. When she tried to get a temporary medical exemption, she was told she needed to see a specialist first.

Her GP referred her to Dunedin Hospital on November 29, but the request was declined. The GP tried again this week, and after Stuff made inquiries with the Southern District Health Board and the Health Ministry, McLean received a phone call from a specialist, who confirmed she needed an exemption. She now has to wait for it to go to a panel before the director-general of health makes the final call. The health board said the ministry ran the exemption process, so it could not comment on the case.

McLean is a bit better now but still gets breathless at the slightest effort, has nausea and tingling down her leg. She is still unable to cook and has gained 9 kilograms despite eating very little.

Brendan Robinson was bedridden for a year, shivering and his bones aching after he had a half-dose of the flu jab in 2016. The Wellington man, who has been unable to work since because of his CFS, is not willing to take any chances with the Covid-19 vaccine.

“It’s unethical to expect ME/CFS people with previous vaccine worsening to risk a medical experiment on themselves,” Robinson said.

“We are not against the vaccine. It’s our immune system that’s the problem. Anti-vaxxers actually make it worse for us.”

Robinson lives in fear of catching Covid-19. He is living in his caravan to be isolated from boarders in his house, and avoids going out. He wants the Government to prioritise CFS patients for access to Covid-19 treatment.

A Health Ministry spokesperson said CFS patients concerned about getting the vaccine should talk to their doctor. The Covid-19 Vaccination Technical Advisory Group would consider this matter, he said.

Those who did not meet the current criteria would not be granted an exemption, he said.

Where to get help

• 1737, Need to talk?Free call or text 1737 to talk to a trained counsellor.

• Anxiety New Zealand0800 ANXIETY (0800 269 4389)

• Depression.org.nz0800 111 757 or text 4202

• Lifeline0800 543 354

• Mental Health Foundation 09 623 4812, click here to access its free resource and information service.

• Rural Support Trust0800 787 254

• Samaritans0800 726 666

• Suicide Crisis Helpline0508 828 865 (0508 TAUTOKO)

• Yellow Brick Road 0800 732 825

• thelowdown.co.nzWeb chat, email chat or free text 5626

• What's Up0800 942 8787 (for 5- to 18-year-olds). Phone counselling available Monday-Friday, noon-11pm and weekends, 3pm-11pm. Online chat is available 3pm-10pm daily.

• Youthline0800 376 633, free text 234, email talk@youthline.co.nz, or find online chat and other support options here.

• If it is an emergency, click here to find the number for your local crisis assessment team.

• In a life-threatening situation, call 111.