The Ministry of Health (MoH) has not provided an official response to ANZMES petition for ME/CFS to be reclassified as a disability.
ANZMES are waiting for an official response rather than relying on comments provided to the media.
We have advocated for reclassification for many years, and this is not the first petition. ANZMES will continue to petition the government until change is achieved.
Following previous advocacy efforts, the MoH position to not reclassify was due to budgets and allocation of funds. It has been about numbers rather than the people affected.
ANZMES President, Fiona Charlton says, “What they have failed to understand previously, is that ME/CFS is truly a debilitating and disabling condition, with little recognition, and inadequate access to services.
Reclassification would help provide the support needed for people with ME/CFS to have improved quality of life and improved equity to health services.”
There are an estimated 45,000 people living with ME/CFS in New Zealand, and the potential for this to drastically increase due to many with Long COVID also fitting the diagnostic criteria for ME/CFS.
Many of these people living with this disabling condition do not fit the criteria for NASC, Care Plus, and Long Term Conditions support through government services.
Home help is a crucial service but not easily accessible currently. Reclassification would legitimise how debilitating this condition is and validate the condition as a disability, enabling access to support.
The petition has been accompanied by an evidence-based report, sent to Whaikaha (Ministry of Disabled People), Health & Disabilities Commissioner, Disability Rights Commissioner, Health Select Committee, Health Ministers, and the COVID-19 Response Minister, and ANZMES is awaiting their responses.
ANZMES is very pleased with the new appointment of CEO to Whaikaha. Paula Tesoriero understands the needs of people with ME/CFS and we not only congratulate her in her role and believe she’ll do a great job for all people living with disabilities, but we hope that in this new role she’ll be in the position to affect real positive change for people with ME/CFS.
Charlton says, “we have not given up hope.”
“After this due consideration by parliament and portfolio ministers, and the new CEO of Whaikaha, we hope that we will receive the very long overdue ‘yes’ we have all been waiting for.”
The petition closed on 29th August. Simeon Brown, National MP for Pakuranga kindly agreed to submit the petition on ANZMES behalf to be read in parliament. This will happen within the next month.
What is ME/CFS?
A chronic illness involving overwhelming ongoing fatigue, ME/CFS is often triggered by a viral illness. The condition causes a variety of symptoms that range in severity as it affects many body systems, such as the immune, neuroendocrine and autonomic nervous system.
Who are ANZMES? ANZMES has been providing information, building awareness, 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.
See www.anzmes.org.nz/petition-disability for more information.
