ME/CFS Reclassification Petition – ANZMES set to speak to parliament

ANZMES is set to speak to parliament on May 3rd to present an oral submission to the Health Committee – an opportunity to strengthen the argument for the reclassification of ME/CFS to a disability.

Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) petition to reclassify ME/CFS as a disability was read in Parliament, on the 13th of September 2022, and has been under consideration with the Health Committee since then.

ANZMES president, Fiona Charlton, will speak to parliament on behalf of the members that she represents, along with Emeritus Professor Warren Tate and RCNZGPs Fellow Dr. Sarah Dalziel, who will answer the committee’s questions.

ME/CFS is a debilitating long term condition that affects multiple body systems and is characterised by Post Exertional Malaise, where symptoms worsen after periods of even ordinary activities. The current classification of ME/CFS as an illness rather than a disability makes it difficult for individuals who suffer from the condition to access the necessary support that they need to lead quality lives.

“We must make this chronic condition a disability now and give people fair access to the help that they need,” says Charlton.

A growing number of people with long COVID are now being diagnosed with ME/CFS, putting strain on already exhausted resources.

There is no dedicated funding for the condition and the current classification and system is difficult to navigate. There are complicated assessment processes and policies. There is disparity between regions causing access inequality.

In order to be diagnosed with ME/CFS a person must be significantly impaired in terms of functioning in daily life, such as work or school.

ANZMES has presented the government with detailed reports, research and recommendations and now hope that they will listen and take the urgent action that is needed.

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 43 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. ANZMES is a RNZCGP registered provider for continuing education. Health professionals can earn CME/CPD credits with ANZMES latest education programme – Know M.E. – a video podcast and news series featuring up-to-date, evidence based research and information on ME/CFS and Post COVID Conditions.

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