Long Covid has added strain to support services for those suffering from Chronic Fatigue Syndrome, amid calls for the condition to be classified as a disability.
A petition to reclassify myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as a disability was read in Parliament today.
The disease, which can be triggered by a viral infection, has a life long impact on those who are affected, but getting help can be difficult as it is not considered a disability by Work and Income.
Fiona Charlton was diagnosed with CFS in 2008 - and is also the president of Complex Chronic Illness Support and the Associated New Zealand ME Society.
She developed the condition after contracting glandular fever - caused by the Epstein-Barr virus - as a young person.
"For a good two years after it I would struggle with energy and I wouldn't be able to keep up with classmates on the playground," she said. "Eventually I started to improve but never got back to what I was like before it," she told Checkpoint.
"Long Covid clients have looked around and obviously there wasn't any support, except for the ME charities" - Fiona Charlton
In her 20s, Charlton suffered from food poisoning and shingles, which eventually developed into ME.
She said despite ongoing research, there was still a stigma surrounding the condition in the medical world.
"Even the lead medical association still believes that it's a psychological rather than a biomedical disease, despite all the latest research that has been produced over the last decade to twenty years showing the malfunctioning immune system, showing brain abnormalities, neuro-endocrine disorders," she said.
"It's frustrating to say the least and disappointing, particularly as the evidence is there and we provide the research to them quite regularly."
And while people with ME/CFS were already struggling to access support, an influx of people with long Covid was increasing demand on non-profits like Complex Chronic Illness Support and the Associated New Zealand ME Society.
"Long Covid clients have looked around and obviously there wasn't any support, except for the ME charities," Charlton said.
"So we've all taken on clients, provided them with information, examples of how to manage their symptoms and that kind of thing.
"But obviously we're all stretched, resources are stretched and all non-profits are underfunded."
Charlton said it was expected that at least ten percent of long Covid cases would fit the criteria for a diagnosis of ME.
"So it means the prevalence is increasing, so we need more funding, we need more resources, we need help from the government to provide those resources and services."
If ME/CFS was reclassified as a disability, Charlton said it would legitimize the condition and validate it as disabling.
"The thing that people don't realise is that it is disabling and for a good 25 percent of all people with ME, they are actually bedbound and may actually require in-home nursing care," she said. "And for a good 60 percent, we're housebound."
Emeritus Professor Warren Tate from Otago University's Department of Biochemistry said ME/CFS was a condition that was ongoing and lifelong for the large majority of those affected.
For the 25 percent of sufferers that were severely affected and bedbound, many required significant help both socially and financially, he said.
"ME/CFS being listed as a chronic illness and not a disability means it is very difficult for them to get adequate access to social services and financial support," he said.
"When compulsory assessments were instituted for disability allowances by Work and Income with a designated doctor, ME/CFS patients who had been restricted with severe disease for many years were pronounced fit for fulltime work after just a 7 minute consultation.
"Reclassifying ME/CFS as a disability rather than a chronic illness will give due recognition to ME/CFS as a serious disabling illness."