Kiwis with chronic fatigue ‘extremely disappointed’ officials won’t reclassify illness

Kiwis living with the “debilitating” impacts of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) say it is “extremely disappointing” officials do not plan to recognise the condition as a disability.

This month, the Associated New Zealand ME Society submitted a petition to Parliament calling for ME/CFS to be reclassified from a chronic illness to a disability, to better help people access support. It closed on Monday, after garnering 6400 signatures.

The Ministry of Health said it understood the impact of illnesses such as ME or CFS “can be significant for individuals and their whānau, and that the symptoms can be experienced as disabling”.

Despite this, the ministry said it was “not currently looking into reclassification for ME/CFS”.

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The Centres for Disease Control and Prevention defines ME/CFS as a “disabling and complex illness” involving ongoing overwhelming fatigue not improved by rest and issues with sleep, thinking and concentrating. It is often, but not always, triggered by viral illness.

Adam Trotter, who developed ME four years ago aged 40, after having myocarditis, said life “changed overnight” for him.

Some days, the formerly fit and healthy Auckland man’s energy is so depleted he has to choose between making food or going to the toilet.

But Trotter is “stuck” – he’s unable to work, but because ME/CFS isn’t regarded as a disability, he doesn’t qualify for the disability allowance or in-home help.

Trotter said the fact officials were not looking to reclassify the “extremely debilitating condition” as a disability was hard to “get [his] head around”.

“I’d love these people that make decisions to actually speak with us… to see what a day for us is actually like. It’s definitely a disability as far as anybody who has it is concerned.”

When the petition was circulated, people with ME/CFS felt hopeful something would finally change, he said. Instead, he said they feel “forgotten” – like they’re “not worth anything”.

“This is going to disappoint a hell of a lot of people. It’s a real shame.”

ANZMES president Fiona Charlton urged Parliament to “seriously consider this petition”, which National MP Simeon Brown agreed to submit for reading in Parliament.

Charlton said it was “disappointing” to hear the ministry’s position and authorities “cannot see just how serious this situation is”.

There had been no consultation while the petition was open and ANZMES had not received a response from the Ministry of Disabled People (Whaikaha) regarding its “extensive” report, she said.

There are an estimated 45,000 people living with ME/CFS in Aotearoa – a number which Charlton said could potentially “drastically increase”, as many with long Covid could fit ME/CFS diagnostic criteria.

The ministry said it was “concerned about the impact” of long Covid.

It was undertaking work in a number of areas to assess the longer term impact of Covid-19 – including a study with Victoria University – and it was “hoped that a greater understanding of the issues” would inform future planning in this area.