Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) petition to reclassify ME/CFS as a disability will be read in Parliament, 2pm Tuesday 20th September.

ME/CFS is a debilitating, disabling condition. People who have this illness often miss out on many parts of life - and regretfully that leaves ANZMES representation notably absent from the upcoming reading in Parliament. The condition is characterised by post exertional malaise, where symptoms worsen after periods of even ordinary activities and ANZMES work is often done from home and sometimes even bed.

People with this debilitating condition face barriers to support under the chronic illness classification resulting in poor quality of life and health inequity. For the very severe, inadequate care can result in hospitalisation and even death.

ANZMES believes the current classification and system is difficult to navigate. There are complicated assessment processes and policies. There is disparity between regions causing access inequality.

ANZMES President, Fiona Charlton, says, “people with ME deserve fair and equal access to healthcare and support. There is currently inconsistency when it comes to deciding who is eligible for care and who is not, across New Zealand.”

“ME affects people differently but unless you have extremely high needs, such as personal care for 7 days per week, under the current system, there is no support for you and our ME/CFS non-profit groups are, for some, the only help available.”

In 2010 funding for Long Term Support for Chronic Health Conditions was transferred from the Ministry of Health to the individual DHB’s and this has led to inconsistencies between regions and access inequity.

Each DHB manages their funding and support differently and their regional National Assessment Service Coordinator’s (NASC) do not apply a universal process, which leads to inconsistency of care and support.

With the formation of Te Whatu Ora there is an opportunity to create better pathways and provide universal care and support, but Charlton says “this needs to be developed in conjunction with experts who’ve kept up with the latest research.”

Whānau are also affected by the lack of government support under the current classification with family members taking on the role of carer because of the unrealistic threshold for funding eligibility and are often forced into poverty.

“The COVID-19 pandemic has only worsened this situation, with Long COVID adding strain to those already giving support,” says Charlton.

Following COVID-19 infection, many receive a ME/CFS diagnosis and also require ongoing support services.

Reclassification will lead to real improvements for those in need; providing access to disability support services - much needed home help, housing support, financial support, and counselling access.

What is ME/CFS?

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is often triggered by a viral illness and involves overwhelming fatigue and other symptoms that range in severity as it affects many body systems, such as the immune, neuroendocrine and autonomic nervous system.

The key characteristic of ME/CFS is post exertional malaise (PEM) which presents 12-48 hours after exertion, and can result in days to weeks of exacerbated symptoms.

For the very severe, this exertion can be simply trying to speak, or eat.

Who are ANZMES?

The Associated New Zealand Society for ME/CFS (ANZMES) have been providing information, awareness for ME/CFS, funding research, and advocating for people with ME/CFS for the past 42 years (since 1980). As the national advisory body for ME/CFS in New Zealand, ANZMES disseminates evidence-based information nationally, and represents the ME/CFS voice globally as a founding member of the World ME Alliance. ANZMES acts as the voice of all people living with this disabling disease through advocacy and leadership.

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