Tamzin struggles to sit up and is highly sensitive to the light. Photo / Katie Harris
Tamzin Rumsey is at pains to speak for this interview.
Just the effort of sitting up in a chair is too much and by the time the interview is halfway through her head is tilted back, slumped against the recliner chair, and she's attached to an oxygen machine.
Late last year she started collapsing and going into a shock.
Today she struggles to do anything, is so sensitive to light she's in a permanently dark room, can't see friends because she's too exhausted and often has to crawl to the bathroom because walking requires energy she doesn't have.
"All of my friends are out there doing things and succeeding in pursuing their life and I'm just not . . . It's hard."
The 19-year-old is one of the estimated 25,000 Kiwis battling Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME).
It's a condition that affects women more commonly and is characterised by severe fatigue, concentration problems, inability to exercise and memory issues.
Her loving parents, Dave and Glenys, didn't know what to make of Tamzin's symptoms initially and at first put it down to a recent coeliac diagnosis or the post-university year malaise.
But as they recount their journey since then, both can't hold back their tears.
During high school, Tamzin was a cheerleader, surf lifesaver, circus performer, and a netball centre.
However, getting glandular fever at 15 put a stop to it - and although they thought she was mostly recovered, the illness came back to haunt her.
"I wasn't really the same, but I did get back to it, like I was doing outdoor ed [education], and I was going tramping and rock climbing and stuff all the time."
She was happy, healthy and studying at Victoria University last year when she first noticed something was wrong.
It started with "crazy brain fog" - turning up to class and forgetting where she was going and at one point needing help from a stranger to get home from a lecture.
"That was really scary. I went to the doctor and I explained all of this and they were like 'well what do you want me to do about it? Do you want me to send you to the hospital or something?'."
In a statement, the Ministry of Health told the Herald on Sunday conditions such as CFS are challenging for patients as there is no specific treatment or cure.
"The focus for treatment is on the management of symptoms, which is best co-ordinated via general practitioners.
"Individual DHBs may also have localised pathways to support diagnosis and treatment in their areas."
When her health spiralled further, Tamzin even called her mother, saying that she thought she had a brain tumour because of what was happening to her.
That year she collapsed twice.
This is known as a "freeze" or a "crash" where the body just stops.
"We went to A&E and he [the doctor] said, 'Oh it's just in your head, it's just a psychological reaction'. And I was like 'yeah that kind of make sense'."
As Tamzin's physical health spluttered, so too did her mental health, but medication to assist with this did not work for her and she had to stop.
The energy crashes she was going through were "so scary", Glenys says, they were "unbelievable".
"When it's happening I have no idea why. If I could just leave Tamzin feeling numb that would be all right, but the pain starts in different parts of her body and it moves," says Glenys.
In coming to terms with their daughter's health issues there was a lot of grief, Dave says, because they lost part of their energetic child.
"To see her going through this, it's not easy."
Adding to the stress has been trying to get government assistance to help cover the expenses of her condition.
He says Tamzin has had to go on a job seeker's benefit and she has to show up each month and prove she's sick to get it renewed every few months.
"Every time that happens it's a stress and it's mental effort. Heaven help anyone trying to do this without support. Anyone trying to live through this alone," says Dave.
If sufferers are lucky, he says, some can get on the supported living allowance with doctor's permission. They are waiting to hear if Tamzin's been approved for this.
Ministry of Social Development client service delivery general manager Kay Read told the Herald on Sunday there was a range of assistance available for people with health conditions or a disability, including ME/CFS.
"Granting of a benefit for health and disability reasons would be based on advice from their doctor who would provide a medical certificate advising how long they would be unable to work as result of their medical condition."
Changes to this system were also announced in Budget 2021 and from January 31 next year there'll be a new medical certificate process to assess people's work capacity and obligations when a health condition, injury or disability affects their ability to work.
The ministry's website says these may mean fewer unnecessary visits to their health practitioner, less cost and fewer gaps in their income support.
Right now Tamzin's focused on pacing - which means purposefully slowing down in a bid to rebuild energy stores.
She had to do this in preparation for this interview.
"Once I realised I was actually sick and this was now my life, it kind of got easier. Because I just sort of let go of obligations."
Dave says people with ME/CFS still face a lot of stigma, some calling it "Yuppie Flu" and assuming it's just people "being lazy".
"What we want people to know about it, is that it's real. That, you shouldn't despise people that have got it and accuse them of being lazy."
For most people with ME/CFS, he says they desperately want to get back to good health and start living their life again.
"They don't want to be where they are, it's not laziness. A lot of people with ME were high achievers, that's something we've really noticed."
Tamzin has felt the stigma first hand. She recalls bumping into an old teacher at the supermarket while she was in a wheelchair.
She says when they inquired about why she was in a wheelchair she noted it was due to ME/CFS, she says they then told her "oh, so you're just tired".
"The pain sucks, the crashes suck. Having to just sit there, when you feel like doing anything but," Tamzin says. "When I have the adrenaline dumps, it feels like my body is giving me false energy, it's excruciating."
Even reading text messages longer than a few words is too much for her, however she can sometimes play the game Minecraft - which isn't too intensive.
"I struggle with that so much. It's just believing that it's not just my mind making stuff up, because I am talking right now, I can laugh I can be present. And then I'm just not.
"I'm stuck doing three things, I lie down, I can go on my phone, I can watch movies and I can play freaking Minecraft. I don't even like Minecraft, but it's one of the only things I can do. Why can't I crochet, but I can do this? Why can't I manage to cook?"
This severe exhaustion was evident during this interview when Tamzin had to leave before it was over because she could no longer sit up.
Emeritus Professor Warren Tate knows what the Rumseys are going through.
Thirty years ago, his then 14-year-old daughter came down with a mysterious disease which they later found out was ME/CFS.
Since then, the molecular biologist has studied the condition.
He says reports of the disease started in the 1930s and there have been 75 "incidents" of what Tate describes as probably a viral infection which has led to ongoing disease for some since then.
"We had our own one in New Zealand, you may have heard of the Tapanui flu. [In] a small South Otago town, suddenly all of the inhabitants came down with this illness and some of them had ongoing illness."
That was in 1984, but prior to this The Royal Free Hospital in London had a similar outbreak which he says affected about 300 staff, and led to ongoing disease for some.
This is where the name Myalgic Encephalomyelitis, because they had myalgia and
Encephalo pain, referring to brain effects and apparently inflammation.
Tate says as far as he knows, the name Chronic Fatigue came from the US, at around the same time as our "Tapanui flu" outbreak, from an incident at Lake Tahoe - which at the time was labelled as mere "hysteria".
"The medical profession really rather dismissed it as a serious disease for many many years in the United States and it's really only been in the past five to 10 years where it's getting proper attention."
His own daughter developed the disease following a bout of glandular fever and he says one in 10 people will develop ME/CFS following the condition.
For the next three to four years she was essentially bed-bound and needed three hours to recover after taking a shower.
"She had a lot of pain during the night, all of the myriad symptoms. She became allergic to all of her food . . . my wife had to systematically go back to basics- which kind of flour could she have and not have a response from. And 30 years later she still largely lives on that today."
Normally he says, there's an acute phase, and sadly one in four people never actually leave that and have to live life housebound, three out of four then go to a chronic phase and can try build a restricted, but constructive, life.
These people, he says, are subject to frequent relapses.
"My daughter kind of went into that for kind of three to four years and started really climbing the ladder to trying to get her life back. And it would be two steps up and one step falling back."
Although those with ME/CFS have access to more information now, he says up until he started giving a teaching slot about it to medical students in 2013, doctors didn't get training on the condition.
"So doctors who have not trained recently have never been exposed to it, so they find it extremely difficult to deal with the illness. So patients feel frustrated because generally they know more about it."
In terms of financial support, Tate also told the Herald on Sunday that those needing social payments haven't been eligible for the same funding as people with other diseases.
"This is an ongoing disease at the moment, ME/CFS, for the large majority of patients - and we're talking about as many as 95 per cent - seems to be life-long."
Now, due to the pandemic, he says, instead of having a few hundred or a thousand cases here or there, 20-40 million are coming down with the post-viral fatigue syndrome that is called long Covid.
Although those with long Covid aren't officially classified as having ME/CFS, Tate says people like him are trying to do research to see if the molecular signatures that he's derived from ME/CFS are found in long Covid.
Although each day is still a battle, Glenys says that this month Tamzin walked outside and into their garden for the first time in a very long time.
"It was sunny as well. This was a major thing in our life. That was the first time she's done that and sat out there, so things are looking better."
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