ANZMES Demands Urgent Action On Severe ME Day, Highlighting "Systemic Neglect" Of Thousands Bedridden In NZ

On Severe ME Day, the Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) is issuing an urgent call for government action to address the systemic neglect of New Zealanders living with Severe and Very Severe Myalgic Encephalomyelitis (ME). ANZMES highlights that an estimated 25% of the 65,000 Kiwis with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) - over 16,000 people - are housebound or completely bedridden, many requiring 24/7 care simply to survive.

Severe ME is a devastating, multi-systemic neurological illness that can leave individuals unable to tolerate light, sound, or touch. It can rob them of the ability to speak, eat, or perform any basic self-care. Despite the severity and scale of the crisis, these individuals remain largely invisible, trapped within their homes and failed by a healthcare system ill-equipped to meet their needs.

Fiona Charlton, ANZMES president states "Their suffering is compounded by a healthcare system that lacks the necessary expertise and facilities. On Severe ME Day, we are not just asking for awareness, we are demanding tangible commitments from MPs to provide safe, compassionate, and evidence-based care. Inaction is no longer an option."

ANZMES is calling on policymakers to address this crisis by actioning specific, urgent changes:

Fund Dedicated Care: Establish funding for dedicated ME/CFS respite and long-term residential care facilities staffed by healthcare professionals trained by ANZMES in the specific needs of severe ME patients.

Mandate Education: Implement mandated ME/CFS education for all healthcare professionals to ensure safe, evidence-based practice and prevent the harm caused by inappropriate advice like Graded Exercise Therapy (GET).

Update Disability Policy: Formally include ME/CFS in all national disability support policies and frameworks, as recommended by the United Nations, to ensure access to essential support.

United Nations Committee on the Rights of Persons with Disabilities (CRPD. In its 2022 review, the Committee made a recommendation that the New Zealand government should: “Expressly include ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) in disability policy and practice, to ensure access for persons with ME/CFS to health care and disability services”.

As part of the campaign, ANZMES is running an InMEmory Tribute to honour the individuals who have been lost to ME/CFS and to acknowledge those currently living in profound isolation.

"Every name and country in our tribute represents a life devastated by this illness and a family left to navigate a broken system," said ANZMES President. "Their lived stories are the reason we fight for a future where no one is left to suffer in silence."

ANZMES urges the public, healthcare professionals, and policymakers to visit its website Severe ME Day 2025 to access critical resources and learn how they can support the urgent call for action.

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