- ANZMES submits to the Royal Commission
- National Advisory on ME releases Best Practice Guidance with clinician and researcher support
ANZMES submits to the Royal Commission
The New Zealand Royal Commission has opened an inquiry into the COVID-19 pandemic, seeking to gather information from New Zealanders (individuals and organisations) for their “COVID-19 Lessons Learned” Inquiry to ensure that Aotearoa/New Zealand is as prepared as possible for future pandemics.
Through an online form, which closed 24th March 2024, people could have their say in English, Te Reo Māori, NZ Sign Language, Chinese, Tongan, Samoan, and Hindi.
The two questions
Question 1: Looking back – what would you like the Inquiry to know about your experiences of the pandemic?
Question 2: Moving forward – what lessons should we learn from your experiences so we can be as prepared as possible for a future pandemic?
ANZMES has made a submission in consultation with the Aotearoa/NZ ME/CFS organisations as follows:
“As the National Advisory on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), we appreciate the opportunity to provide feedback for the inquiry into the pandemic response, from the perspective of people living with ME/CFS. ANZMES and the regional Aotearoa/New Zealand ME/CFS organisations have been at the forefront of supporting individuals with both ME/CFS and long COVID and advocating for their rights and needs, especially during public health crises, such as the recent pandemic.
We provide the following feedback and experiences at the request of our members and the regional organisations.
Find ANZMES’ elaborate reaction to both questions here.
National Advisory on ME releases Best Practice Guidance with clinician and researcher support
The Aotearoa/New Zealand National Advisory on ME (ANZMES) has released best practice guidance for the diagnosis and management of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.
There is a call for national guidelines to be developed in consultation with ANZMES, to ensure only the latest evidence-based research and data is adopted and used by the health profession.
New Zealand-based and international reputable ME/CFS and long COVID researchers and clinicians have signed their names in support of this newly released guidance. The document has been sent to the relevant health associations, medical bodies, and medical schools. The different aspects of the document can be seen below:
Some higlights
Key practice points
The Institute of Medicine (2015) Criteria are the preferred diagnostic criteria for ME.
The Canadian Consensus Criteria are the preferred criteria in research for ME.
International guidelines from institutions like the Mayo Clinical Proceedings, Centers for Disease Control and Prevention (CDC), and National Institute of Health and Care Excellence (NICE) provide an up-to-date framework for healthcare professionals to navigate the complexities of symptom management in ME.
International guidelines uniformly advocate a multidisciplinary approach, emphasising the identification and management of the cardinal symptom – Post-Exertional Malaise (PEM).
Symptom management is the focus of treatment with emphasis on pacing – a free energy management technique used to avoid PEM. Ignoring these guidelines can worsen a patient’s condition.
Robust review of evidence has led to the removal of three previously recommended treatments from international guidelines – Cognitive Behavioural Therapy (CBT), Graded Exercise Therapy (GET), Lightning Process. Continuing to perpetuate the prescription of these treatments may cause harm.
The appropriate international guidelines for the diagnosis and management of ME are:
The Institute of Medicine 2015
Canadian Consensus Criteria (CCC)/International Consensus Criteria (ICC)
Mayo Clinic Proceedings
Centre for Disease Control and Prevention (CDC)
National Institute for Health and Care Excellence (NICE)
All info here
The ME Global Chronicle 