Critical Reforms Needed For ME/CFS Patients In Aotearoa: Coalition Calls On HDC For Action

The Health and Disability Commissioner (HDC) is currently reviewing the Health and Disability Commissioner Act 1994 (the Act) and the Code of Health and Disability Services Consumers’ Rights (the Code). These pieces of legislation aim to promote and protect the rights of health consumers and disability services consumers, ensuring the fair, simple, speedy, and efficient resolution of complaints relating to the infringement of these rights.

In a bid to drive critical improvements in healthcare services for ME/CFS patients, the coalition of organisations representing the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) community in Aotearoa New Zealand has submitted a comprehensive report directly to the HDC

The submission calls for critical improvements in healthcare services for ME/CFS patients and highlights current rights violations under the Code.

The report states that ME/CFS patients frequently encounter healthcare providers who lack the necessary knowledge and expertise, leading to substandard care. Currently, there are no senior specialists in ME/CFS in New Zealand, exacerbating the inadequate dissemination of up-to-date clinical guidance. Despite ME/CFS meeting the New Zealand government and United Nations definitions of 'disability,' patients are excluded from Disability Support Services (DSS) funding, nor are they supported through Long Term Support - Chronic Health Conditions (LTS-CHC) funding. This has resulted in significant shortfalls in funding for essential services and practical supports that could vastly improve their quality of life. The report also highlights that some health practitioners continue to recommend discredited treatments such as Cognitive Behavioural Therapy and Graded Exercise Therapy without informing patients about the lack of evidence for these treatments and their potential risks. This lack of transparency prevents patients from making informed decisions about their healthcare.

The coalition's report emphasises that these issues are violations of the Code. Specifically, the right to services of an appropriate standard (Right 4) and the right to be fully informed (Right 6) are being infringed upon. The absence of knowledgeable practitioners and senior specialists means patients are not receiving the care they are entitled to, while the lack of transparency about treatment risks denies them the ability to make informed choices.

In this submission, the collective calls for medical education institutions to ensure comprehensive and up-to-date training on ME/CFS for health professionals. This includes adopting recognised diagnostic criteria, to ensure accurate diagnosis and effective symptom management.

Furthermore, it urges that healthcare providers must inform patients when recommending treatments that lack a quality evidence base or may be harmful. Ensuring transparency and informed consent is essential to protect patients from harm and enable them to make well-informed decisions about their healthcare. In addition, Health NZ and the Ministry of Health must be held accountable for adequately supporting ME/CFS patients. This includes ensuring that health professionals and support services are sufficiently equipped to meet the specific needs of this patient group and allocating adequate funding and resources for multidisciplinary care and practical supports, such as home help.

ME/CFS patients must receive the adequate diagnosis, care and support they need. If the HDC addresses these critical issues within the Act and the Code, the collective hopes that New Zealand can significantly improve the quality of life for ME/CFS patients and uphold their rights within the healthcare system.

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The submission was compiled by Aotearoa Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collective:

ANZMES (Associated New Zealand Myalgic Encephalomyelitis Society) – National Advisory on ME

Complex Chronic Illness Support

M.E. Awareness NZ

MECFS Canterbury

MEISS Otago and Southland

ME Support NZ

Rest Assured Respite Charitable Trust

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