Petition to reclassify ME/CFS under way

❛ Even the lead medical association still believes that it’s a psychological rather than a biomedical disease

WELLINGTON: Long Covid has added strain to support services for those suffering from chronic fatigue syndrome and there are 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 yesterday.

The disease, which can be triggered by a viral infection, has a lifelong impact on those who are affected, but getting help can be difficult as it is not considered a disability by Work and Income.

Complex Chronic Illness Support and the Associated New Zealand ME Society president Fiona Charlton was diagnosed with ME/CFS in 2008.

She developed the condition after contracting glandular fever — caused by the EpsteinBarr 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.

‘‘Eventually I started to improve but never got back to what I was like before it,’’ she said yesterday.

In her 20s, Ms Charlton suffered from food poisoning and shingles, which eventually developed into ME/CFS.

Despite ongoing research, there was still a stigma surrounding the condition in the medical world, she said.

‘‘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, neuroendocrine disorders.

‘‘It’s frustrating to say the least, and disappointing — particularly as the evidence is there and we provide the research to them quite regularly.’’

While people with ME/CFS were already struggling to access support, an influx of people with long Covid was increasing demand on nonprofits 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.

‘‘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 nonprofits are underfunded,’’ she said.

It was expected that at least 10% of long Covid cases would fit the criteria for a diagnosis of ME.

‘‘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, it would legitimise the condition and validate it as disabling.

‘‘The thing that people don’t realise is that it is disabling and for a good 25% of all people with ME, they are actually bed bound and may actually require inhome nursing care,’’ she said.

‘‘And for a good 60%, we’re housebound.’’

University of Otago Department of Biochemistry emeritus professor Warren Tate said ME/ CFS was a condition that was ongoing and lifelong for the large majority of those affected.

For the 25% of sufferers that were severely affected and bed bound, 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.

‘‘Reclassifying ME/CFS as a disability rather than a chronic illness will give due recognition to ME/CFS as a serious disabling illness,’’ Prof Tate said. — RNZ