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National Advisory on ME releases Best Practice Guidance with clinician and researcher support.

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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 document can be seen below:

The words with best practice written with chalk and images of light bulbs one is yellow the rest are white

Executive Summary

Introduction

As the National Advisory on Myalgic Encephalomyelitis (ME), we present the latest updates to best practice international guidelines for immediate use to standardise care in New Zealand.  This document highlights the critical importance of adhering to current, evidence-based recommendations, incorporating expert consensus for the diagnosis and management of ME while moving away from practices that have been proven to be harmful or disproven by contemporary research.

Overview

Advances in research have evolved our understanding of ME, refining diagnosis criteria and symptom management. Research now shows clearly that the basis of ME is biomedical rather than psychological, with multi-systemic dysfunction driving pathogenesis and symptom progression. Guidelines for clinical practice reflect this understanding.

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.

International best practice guidelines play a crucial role in standardising care and improving patient outcomes. We are committed to supporting best practice care for people with ME and we offer resources, training and access to up-to-date guidelines that can assist in aligning NZ medical practice with the latest robust, evidence-based recommendations.

Best Practice Guidelines 

Presented below are the most current evidence-based, reputable international guidelines for the diagnosis and management of ME (also known as Chronic Fatigue Syndrome (CFS) and long COVID.

The landscape of healthcare is constantly evolving, with new research findings and innovative approaches emerging regularly. It is imperative that healthcare professionals stay informed about the latest evidence-based practices and incorporate them into daily routines, therefore enhancing the quality of care provided and ensuring the safety and well-being of patients.

There are longstanding practices that have been widely accepted in the past but have since been debunked or found potentially harmful. It is crucial that we collectively reevaluate and abandon these practices when necessary to prevent harm.

We would like to see national guidelines for New Zealand that follow international guidelines in both primary and secondary care. Standardising care with best practice guidelines eliminates the current postcode lottery for care occurring in our country, and ensures that every individual with ME/CFS, long COVID, and their common comorbidities, is dealt with appropriately, using the latest evidence-based information.

ANZMES has already produced two one-page documents covering pertinent information needed in primary care for diagnosis and management of ME/CFS and long COVID, and will produce guidelines for secondary care in due course.

The appropriate international guidelines for the diagnosis and management of ME are:

  • The Institute of Medicine 20151
  • Canadian Consensus Criteria (CCC)/International Consensus Criteria (ICC)2
  • Mayo Clinic Proceedings3
  • Centre for Disease Control and Prevention (CDC)4
  • National Institute for Health and Care Excellence (NICE)5

Why follow these Guidelines over others? 

Diagnosis

Definitions and diagnosis of ME have advanced as clinical and biomedical understanding of the condition has increased and this is reflected in these guidelines. Over 20 different case definitions have been published with many containing inconsistencies between research and clinical criteria.  

In the past ME was misunderstood and physicians often labelled it as a psychological illness or a form of stress-induced fatigue. Excessively inclusive and inconsistent definitions and criteria initially created misconceptions about ME and led to negative experiences for people seeking diagnosis. For example, in 1991, a group of predominantly psychiatrists published criteria designed for research. This criteria was used for the PACE trial. They recognised a subgroup of people with chronic fatigue present with symptoms after infection. However, they did not exclude those with depression and anxiety, and factored this into the symptom definitions as “mood disturbance.” This has contributed to research in which participants may have had a mental health disorder causing fatigue, rather than ME.6 

As biomedical understanding has increased the diagnostic criteria have evolved,  in particular, to now recognise the multi-systemic nature of the condition and the impairment of the energy and recovery systems that result in Post Exertional Malaise (PEM).

The Institute of Medicine Criteria (IoM) and the International Consensus Criteria (ICC) are currently the most robust diagnostic criteria for clinicians. These set out three primary symptoms that must be present, for a minimum of six months to diagnose ME – PEM, unrefreshing sleep, and unexplained fatigue. At least one other additional symptom must be present – either orthostatic intolerance or cognitive impairment.  Functional impairment must be substantial, with ICC requiring 50% decrease in activity. Case definitions and criteria that do not include PEM, such as Fukuda 19947 are therefore now less commonly used in practice.

The International Consensus Criteria (ICC) was developed as a diagnostic tool for clinicians based on the Canadian Consensus Criteria (CCC). The CCC is considered the strictest criteria and is primarily used in research, superseding Fukuda.

When assessing a patient with a multitude of symptoms the IoM* criteria provide clarity in this process by offering a concise set of required symptoms. The IoM criteria published most recently (2015) are now widely considered to be the best tool for use in clinical settings as they offer a clearer definition than previous guidelines and emphasise the importance of the patient’s subjective experience and the need for thorough case taking and examination. The IoM (2015) can be used for both adults and children.

*IoM is now renamed National Academy of Medicine (NAM).

Symptom Management

Current best practice guidelines from robust unbiased reviews emphasise that all treatment needs to be offered in a way that avoids PEM and recommends that energy expenditure is managed within individual limits. Pacing for people with PEM has been shown to improve quality of life, fatigue severity, and physical functioning.8,9

What is PEM?

Post-Exertional Malaise is the worsening of ME or long COVID symptoms after physical or mental effort and this can happen one or two days after even minor activity.  PEM is also referred to as Post-Exertional Symptom Exacerbation (PESE) and Post-Exertional Neuroimmune Exhaustion (PENE). People with ME describe PEM as “crashing” or “collapsing” with relapse of symptoms.  It is helpful to understand that normally if a person is fatigued after exertion they will rest and then energy will be restored, in ME this physical recovery process is dysfunctional. Studies have identified differences in gene expression, blood volume and oxygen consumption, and mitochondrial function as some potential drivers for this dysfunction. Dysfunction of the regulatory control network within and between the nervous systems is also believed to contribute to the pathophysiology of PEM, which can impact all body systems.10,11 The most common symptoms associated with a PEM flare include body aches, pain, weakness, fatigue, cognitive dysfunction, and orthostatic intolerance.

What is Pacing?

Pacing is an energy management technique that can be used to help with symptoms related to PEM. Patients are encouraged to stay within their energy envelopes and gradually increase their activity levels over time if possible, while being mindful of their limits and symptoms.  The International Consensus Primer12 highlights the importance of patients learning to become aware of their bodies’ early warning signs that they are beginning to push themselves outside their limits. Useful tools include heart rate monitors, step counters, and temperature monitoring. For example, changes in heart rate (above anaerobic threshold) and reduction in body temperature can be early signals of overexertion.

There are three treatments that are not recommended for ME by international best practice guidelines (Mayo Clinical Proceedings, NICE, and CDC):

  • Cognitive Behavioural Therapy (CBT)
  • Graded Exercise Therapy
  • Lightning Process 

Why is Cognitive Behavioural Therapy Contraindicated as Treatment for ME?

Cognitive Behavioural Therapy (CBT) is not recommended as a treatment for ME by leading experts and organisations and is specifically contraindicated in international guidelines. These strategies do not recognise or address the underlying pathophysiological issues.13

While psychological approaches can be supportive they are not evidenced as treatments of the condition.14 There is no evidence to show that CBT can “cure” the physiological and cognitive impairment symptoms of ME and research has been offered to the media in a misleading context, which has led to an exaggerated perception of effectiveness.15 Further independent review has found that “the arguments that are used to claim that NICE was wrong, in reality, highlight the absence of evidence for the safety and efficacy of CBT and GET and strengthen the decision by NICE to drop CBT and GET as curative treatments for ME/CFS.”16

“When you develop therapies based on this psychogenic cognitive-behaviour theory, these therapies do not work, which raises the question of whether the theory works.”
Professor Brian Hughes, BA, EdM, PhD, Psychology Professor NUI Galway

The Mental Health and Addiction division of Manatū Hauora / Ministry of Health clearly stipulates that ME is a complex medical condition rather than a mental health condition (December 2022).

The pathophysiology of ME and Post Exertional Malaise (PEM)

The evidence for the pathophysiology underpinning ME,17 the harm that can result from PEM18 and the value of pacing as a primary strategy has proliferated in the past decade. Speculative theories of ME being associated with deconditioning, exercise avoidance, a somatic perception disorder, or unresolved trauma have been discredited.19,20 This shift from speculation to evidence is now reflected in numerous examples of peer-reviewed research, and in all reputable international guidance. 

Research in New Zealand, under Emeritus Professor Warren Tate and clinician Dr Rosamund Vallings (MNZM) offers insight into the biomedical basis identifying molecular changes in ME patients, including dysfunction of the autonomic nervous system, immune regulation, energy production and lowered general metabolism.21 Dysfunction of the regulatory control network within and between the nervous systems is also believed to contribute to the pathophysiology of PEM, which can impact all body systems.22,23 Further research suggests that PEM may be caused by an overactive immune response, leading to increased inflammation in the body. In a study published in the Journal of Translational Medicine, researchers found that ME patients with PEM and higher levels of pro-inflammatory cytokines in their blood, pointing to a potential immunological pathway.24 

In December 2022, the Ministry of Health supported the conclusions of the guidance for ME published by NICE (2021) saying ‘that ME/CFS is a serious and complex medical condition/disease with varying severity rather than a mental health condition and that there is not a primary psychological basis underlying its development and/or maintenance’.25

Why is Graded Exercise Therapy Contraindicated for ME?

Numerous reputable studies and guidelines including the IoM, NICE, Mayo Clinic and the CDC have removed Graded Exercise Therapy (GET) from treatment recommendations due to the potential that this strategy will elicit Post Exertional Malaise (PEM). This potential for harm extends to patients with Long COVID who experience Post Exertional Symptom Exacerbation (PESE), similar to PEM. 

Guidance that recommends GET and CBT has been withdrawn and replaced with pacing and aligned strategies:

  • The large 2011 PACE randomised trial26 which recommended GET and CBT has been robustly reviewed and discredited.27  Activities carried out as part of the PACE trial differ from what is considered “pacing.” Pacing is explained earlier in this document.
  • The Centers for Disease Control and Prevention removed CBT/GET from the treatment guidelines in 2017.28
  • Recommendation for CBT/GET originated from the 2007 NICE guidelines. However, these recommendations have now been withdrawn as they were based on nine (9) studies (4 CBT, 5 GET) each of which had significant methodological limitations. The 2021 NICE guidelines,29 DO NOT recommend CBT/GET and are based on 172 CBT and 64 GET study outcomes, which factored methodological limitations into the analysis. Arguments against the NICE review have been found to further highlight the lack of evidence of safety and efficacy for CBT and GET.30 Enclosed please find an explanation of the 2021 NICE review.
  • Consensus Recommendations31 published by Mayo Clinical Proceedings, in November 2021, recommended pacing as an individualised approach to energy conservation and management that can minimise the frequency, duration, and severity of PEM. In October 2023, Mayo Clinical Proceedings published a Concise Review for Clinicians for ME.32 This provides clear management advice stating that “Symptom-contingent pacing is recommended to all patients with ME/CFS.” 
  • The CDC and 2007 [and 2021] NICE guidelines cite pacing as an effective component in the treatment of patients with ME.
  • In 2019 and 2020, most Regional Health Pathways teams, in New Zealand, updated their clinical guidance for ME to reflect the IOM 2015 diagnostic criteria and the CDC’s recommendation to offer pacing rather than GET. 
  • Workwell foundation, a group of experts and researchers that work with fatigue-related illnesses, such as ME and Long COVID, oppose the use of GET for ME, explaining that GET “aimed at training the aerobic energy system, not only fails to improve function, but is detrimental to the health of patients and should not be recommended….Indications of metabolic dysfunction in ME/CFS suggest that limiting sustained activity whenever possible is a more reasonable therapeutic approach.” The Workwell Foundation’s  full argument and evidence can be found here in their Letter of Opposition to the use of GET for ME.

This also has implications for people with Long COVID as practitioners follow ME management for this condition, due to their similarities. Recent research comparing long COVID and ME/CFS found similarities that included the experience of low and medium physical and cognitive exertion to trigger PEM, symptoms of fatigue, pain, immune reaction, neurologic, orthostatic intolerance, and gastrointestinal symptoms during PEM, rest to recover from PEM, and benefits from pacing to prevent PEM.33 

The current Ministry of Health NZ Clinical Rehabilitation Guideline for People with Long COVID is aligned with ME/CFS management and states that for PEM or PESE: 

“graded exercise therapy (GET: planned, regular exercise with incremental increases in frequency and/or intensity, duration and type with a goal to increase fitness) is not recommended for these people, because it can cause an exacerbation of symptoms. Symptom-led pacing is advocated for, this includes prioritising, planning, and use of an activity diary.”34

Graded exercise therapy of planned regular exercise, with incremental increases usually utilises heart rate values, however individuals with ME often have chronotropic intolerance and therefore cannot achieve the same values to those individuals without this condition.35

Why is the Lightning Process not recommended for ME?

Best practice guidelines specifically state that the Lightning Process (LP) is not recommended as a treatment for ME, due to a lack of quality evidence and potential harms. 

Proponents of LP quote a single published study of the Lightning Process known as the SMILE trial. This study has been widely criticised for ‘outcome swapping’ as the primary outcome measure was changed from school attendance to scores on a self-report questionnaire. Given that LP overtly encourages patients to only report positive outcomes and improvement in their ability to control symptoms this is likely to lead to response bias. In July 2019, after an investigation by the Archives of Disease in Childhood, a lengthy and detailed editorial correction to the SMILE trial was published.36

The study corrections include, acknowledgement from the authors that the study was not fully ICMJE compliant, with their account of timeline and chronological order and changes being made to the primary outcomes of the study. 

While anecdotal stories indicate that these programmes do improve functionality for some, there are also reports that these programmes cause harm for others. Some people report severe, long term increases in symptoms following participation in these programmes when they have been encouraged to exceed their safe level of exertion. 

The Lightning Process is not cost-effective for many people with ME/CFS who are on low income/government benefits. Pacing, which is a self-management technique, is free, and can be carried out in one’s home. The only cost is if an individual chooses to purchase a wearable to monitor heart rate etc.

The World ME Alliance agrees with the international guidelines and published a position paper stating that: “The World ME Alliance and its members do not endorse the Lightning Process for people with Myalgic Encephalomyelitis (ME), sometimes called Chronic Fatigue Syndrome (CFS).”37

Given the lack of evidence for Lightning Process and aligned programmes, the claims of cure, the lack of informed consent provided to patients around the risk of PEM, and the potential for negative outcomes, it should not be promoted to, or recommended by, health professionals. 

Lived experience

The inclusion of consumers’ lived experiences is essential to the development and evaluation of health service delivery and to making quality improvements in the health system. The Health Quality and Safety Commission (HQSC) identifies that lived experience stories can help highlight where and how services could be improved to meet peoples’ needs. 

Narratives from members of the NZ ME/CFS community in the form of Case Studies have been obtained through the regional ME/CFS organisations to illustrate examples of harm that have occurred through misinformation and treatment recommendations for GET or the Lightning Process. They have not been included in this document as they are not peer-reviewed or published case studies, however these are available upon request.

Potential impact on the health of the community

Continuing to perpetuate these outdated recommendations may lead to harmful practice and teach new health practitioners to continue this. Inconsistencies between New Zealand medical practice teachings and international standards may also lead to confusion for new and emerging practitioners. 

There is great potential for harm because patients with ME who ignore or push through their symptoms can worsen their condition, often becoming bedridden.38 

Doctors with M.E state “Discriminatory practice and standards in research, clinical knowledge, and safety which would not be tolerated in any other disease areas have become normalised in the field of ME/CFS. However such practice is unlawful, harms patients, and generates risk.”39

As any good researcher or clinician should know, basing a theory or treatment regime, on one single study, is not good practice. Especially if the single study is known to be flawed and unreplicated. Studies must have sound methodology, high validity and reliability, and outcomes must be replicable. Even Randomised Control Trials (considered the most robust) can have flaws in methodology that affect outcomes, as demonstrated by the SMILE trial. It is imperative that health professionals and medical associations and schools use the growing body of research and knowledge to support its resources, take note of meta analyses and robust literature reviews, and only publish information that is supported by the evidence.

Using outdated and flawed studies for the basis of treatment programmes for healthcare in Aotearoa/New Zealand will undermine the reputation and authority of New Zealand medical professionals within the eyes of the international medical, clinician, and research communities. It makes it harder for New Zealand health professionals to be taken seriously on the international stage, if the country’s health policies and practices reflect outdated opinions and flawed studies.

The medical profession has a duty to uphold a standard of care that follows the Hippocratic oath of “first, do no harm” and it is vital that all publications produced by health professionals follow these standards, and those that are discredited, harmful, or outdated are removed from circulation. 

We welcome the opportunity to work with you to ensure that any publications disseminated by health professionals or associations, follow the latest reputable research and guidelines. Our team of world-renowned experts are at the forefront of ME/CFS research and clinical practice and as the National Advisory on ME, ANZMES is fully equipped to provide the resources necessary to ensure that only the appropriate information is made available nationwide. Please utilise our expertise, on a subject that we spend 100% of our time researching, analysing, representing, and educating on, to ensure that best practice guidelines are the ONLY guidelines released by any Aotearoa/New Zealand based medical entity or representative.

We look forward to your positive response.

Yours sincerely

Fiona Charlton

President, ANZMES

Organisations in support of this letter:

M.E. Awareness NZ

Complex Chronic Illness Support

ME Support – NZ

MECFS Canterbury

MECFS MEISS (Otago and Southland)

Rest Assured Respite Trust

World ME Alliance

Emerge Australia

The ME Association (MEA)

Solve M.E.

Clinicians and Researchers in support of this letter:

Aotearoa/New Zealand

Emeritus Professor Warren Tate, University of Otago

Dr. Rosamund Vallings, MNZM

Dr. Anna Brooks, University of Auckland

Dr. Sarah Dalziel

Dr. Cathy Stephenson

Dr. Ken Jolly

Dr. Judijke Scheffer

Dr. Lynette Hodges, Massey University

Assoc. Professor Mona Jeffreys, Victoria University

International

Professor Sonya Marshall-Gradisnik, NCNED Professor

Dr. Charles Shepherd, MEA

Professor Leonard Jason, de Paul University

Professor Maureen Hanson, Cornell


References

1 Institute of Medicine of the National Academies. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.2015. www.nap.edu/read/19012

2 Carruthers BM, van de Sande MI, De Meirleir KL, Klimas NG, Broderick G, Mitchell, et al. Myalgic Encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine. 2011 doi: 10.1111/j.1365-2796.2011.02428.x. (published online on 20 July 2011)

3 Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. 2023. Mayo Clinic Proceedings. https://doi.org/10.1016/j.mayocp.2023.07.032

4 Centers for Disease Control and Prevention. (2022). Information for Healthcare Providers. Understanding History of Case Definitions and Criteria. www.cdc.gov/me-cfs/healthcare-providers/case-definitions-criteria.html

5 National Institute for Health and Care Excellence (NICE). (2021). ‘Overview | Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis and Management | Guidance | NICE’. NICE. https://www.nice.org.uk/guidance/ng206

6 Sharpe, M.C. et. al. (1990) A report – chronic fatigue syndrome: guidelines for research https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/pdf/jrsocmed00127-0072.pdf

7 Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. (1994). The chronic fatigue syndrome: A comprehensive approach to its definition and study. Annals of Internal Medicine. 1994;121:953–959.

8 Jason L, Benton M, Torres-Harding S, Muldowney K. The impact of energy modulation on physical functioning and fatigue severity among patients with ME/CFS. Patient Educ Couns. 2009;77(2):237-241. doi:10.1016/j.pec.2009.02.015  

9 Bested AC, Marshall LM. Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians. Rev Environ Health. 2015;30(4):223-249. doi:10.1515/reveh-2015-0026

10 Tirelli U, Chierichetti F, Tavio M, Simonelli C, Bianchin G, Zanco P, Ferlin G. Brain positron emission tomography (PET) in chronic fatigue syndrome: preliminary data. Amer J Med 1998; 105(3A): 54S-58S. [PMID: 9790483]

11 De Lange F, Kalkman J, et al. Gray matter volume reduction in the chronic fatigue syndrome. Neuroimage 2005; 26: 777-81. [PMID: 15955487]

12 Carruthers B. M. & van de Sande M. I. (2021). Myalgic Encephalomyelitis – Adult & Paediatric: International Consensus Primer for Medical Practitioners.

13  Twisk and Maes (2009) https://pubmed.ncbi.nlm.nih.gov/19855350/

14 Doctors with ME https://doctorswith.me/nice-gp-update/

15 ‘Are the New NICE Guidelines for ME/CFS at Odds with the Research Evidence?’, 14 August 2022. https://www.bmj.com/content/375/bmj.n2647/rr-1.

16 Vink M, Vink-Niese A. The Updated NICE Guidance Exposed the Serious Flaws in CBT and Graded Exercise Therapy Trials for ME/CFS. Healthcare (Basel). 2022 May 12;10(5):898. doi: 10.3390/healthcare10050898. PMID: 35628033; PMCID: PMC9141828.

17 ME/CFS and Long COVID share similar symptoms and biological abnormalities: road map to the literature. 2023. Frontiers in Medicine. doi.org/10.3389/fmed.2023.1187163

18 Treatment Harms to Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. 2022. Advances in Bioengineering & Biomedical Science Research. DOI: 10.33140/ABBSR.06.01.01

19 Geraghty K, Jason L, Sunnquist M, Tuller D, Blease C, Adeniji C. The ‘cognitive behavioural model’ of chronic fatigue syndrome: Critique of a flawed model. Health Psychol Open. 2019 Apr 23;6(1):2055102919838907. doi: 10.1177/2055102919838907. PMID: 31041108; PMCID: PMC6482658.

20 van Campen CLMC, Rowe PC, Visser FC. Deconditioning does not explain orthostatic intolerance in ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). J Transl Med. 2021 May 4;19(1):193. doi: 10.1186/s12967-021-02819-0. PMID: 33947430; PMCID: PMC8097965.

21 Sweetman E, Ryan M, Edgar C, MacKay A, Vallings R, Tate W. (2019). Changes in the transcriptome of circulating immune cells of a New Zealand cohort with myalgic encephalomyelitis/chronic fatigue syndrome. Int J Immunopathol Pharmacol. 33:205873841882040.

22 Tirelli U, Chierichetti F, Tavio M, Simonelli C, Bianchin G, Zanco P, Ferlin G. Brain positron emission tomography (PET) in chronic fatigue syndrome: preliminary data. Amer J Med 1998; 105(3A): 54S-58S. [PMID: 9790483]

23 De Lange F, Kalkman J, et al. Gray matter volume reduction in the chronic fatigue syndrome. Neuroimage 2005; 26: 777-81. [PMID: 15955487]

24  Ghali, A., Richa, P., Lacout, C. et al. Epidemiological and clinical factors associated with post-exertional malaise severity in patients with myalgic encephalomyelitis/chronic fatigue syndrome. J Transl Med 18, 246 (2020). https://doi.org/10.1186/s12967-020-02419-4

25 Letter from Ministry of Health. 19 Dec 2022. https://drive.google.com/file/d/1Mkc7tIfXLcMaWQm63_aGRDhN8dEjSWwj/view?usp=drive_link

26 Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. 2011. Lancet. https://pubmed.ncbi.nlm.nih.gov/21334061/

27 Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT. 2018. BMC Psychology. https://doi.org/10.1186/s40359-018-0218-3

28 CDC Treating the Most Disruptive Symptoms First and Preventing Worsening of Symptoms, 2021.https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/treating-most-disruptive-symptoms.html

29 National Institute for Health and Care Excellence (NICE). (2021). ‘Overview | Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis and Management | Guidance | NICE’. NICE. https://www.nice.org.uk/guidance/ng206

30  Vink M, Vink-Niese A. The Updated NICE Guidance Exposed the Serious Flaws in CBT and Graded Exercise Therapy Trials for ME/CFS. Healthcare (Basel). 2022 May 12;10(5):898. doi: 10.3390/healthcare10050898. PMID: 35628033; PMCID: PMC9141828.

31  Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management. 2021. Mayo Clinical Proceedings. L Bateman, et al. https://doi.org/10.1016/j.mayocp.2021.07.004

32  Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. 2023. Mayo Clinic Proceedings. https://doi.org/10.1016/j.mayocp.2023.07.032

33 Vernon, Suzanne D. et al. ‘Post-exertional Malaise Among People with Long COVID Compared to Myalgic Encephalomyelitis/chronic Fatigue Syndrome (ME/CFS)’. 1 Jan. 2023 : 1 – 8.

34  Ministry of Health. 2022. Clinical Rehabilitation Guideline for People with Long COVID (Coronavirus Disease) in Aotearoa New Zealand: Revised December 2022. Wellington: Ministry of Health.

35 Davenport, Todd E. et al. ‘Chronotropic Intolerance: An Overlooked Determinant of Symptoms and Activity in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. Frontiers Paed. 22 Marc. 2019, 7 https://www.frontiersin.org/articles/10.3389/fped.2019.00082/full

36 Editor’s note on correction to Crawley et al. (2018). http://dx.doi.org/10.1136/archdischild-2017-313375ednote

37 World ME Alliance. 2022. The Lightning Process – A Position Paper. https://worldmealliance.org/wp-content/uploads/2022/08/The-Lightning-Process-A-Position-Paper-by-the-World-ME-Alliance-2022-1.pdf

38 Strassheim, Victoria; Newton, Julia L.; Collins, Tracy (February 5, 2021). “Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis”. Healthcare. 9 (2): 168. doi:10.3390/healthcare9020168. ISSN 2227-9032. PMC 7914910. PMID 33562474.

39 Doctors with-ME. ”Rights and Obligations in ME/CFS: Overcoming normalised disregard for standards” https://doctorswith.me/rights-and-obligations-in-me-cfs-overcoming-normalised-disregard-for-standards/

ANZMES 2023 AGM Report

by

The ANZMES AGM was held at 1pm on the 18th November 2023 via ZOOM online meeting.

This was ANZMES 43rd AGM of caring and supporting people with ME/CFS and their whanau and carers, as well as disseminating information, resources, and education to them, the general public, and medical professionals. ANZMES is looking at new initiatives as part of our strategic planning for the next year, and will continue to fund vital research that benefits the ME/CFS community as more physiological evidence is discovered and more understanding of the condition is brought to the fore.

Fiona Charlton (President) opened the AGM Meeting and the President’s report outlined some of ANZMES activities throughout the year. 

Highlights included;

  • This year we are proud to have launched a Grant and Scholarship Programme for postgraduate students and academic researchers. This will be an annual fund for ME/CFS and long COVID study. Two exciting projects are proceeding thanks to the ANZMES Grants of $25,000 each
  • ANZMES launched Know M.E. Series for health professionals providing a monthly newsletter packed full of evidence-based information and research. The associated video podcasts are publicly available. This series is CME accredited by the Royal NZ College of GP’s, and ANZMES is a Registered Provider for continuing medical education. This series features a newsletter covering a different topic each month. Know M.E. also includes a podcast which is publicly available on Spotify, iHeart Radio, Google Podcasts, and iTunes/Apple. The video version is publicly available on YouTube. Each month features special guest interviews speaking about M.E. topics.
  • In May 2023 ANZMES launched two one-page resources for the diagnosis and management of ME/CFS and long COVID in primary care.
  • In early November 2022 we held a long COVID educational event for health professionals. We had over 150 registrants, including GPs, nurses, nurse practitioners, clinic managers, med students, physiotherapists, OTs, and more. Our speakers talked about post exertional malaise and how to avoid it, described the similarities and differences between Long COVID and ME/CFS, how to diagnose both conditions, how to treat through allied health, and the effects of COVID and Long COVID in Māori and Pasifika communities.
  • Dr Sarah Dalziel attending the the 3rd ME/CFS International Conference 2023: RID – Research Innovation and Discovery and provided a summary of the conference.

All present committee member’s have continued their term and were voted on for the upcoming year. The appointments are as follows:

President – Fiona Charlton

Vice President – Ange Robinson

Treasurer – Amy Ma

Reviewer – Alan Shanks

Executive committee – Anna Brooks, Suzanne Duffy, Wendy Matthews, Steve Murray, Gabby Shortt and Ros Vallings.

Heather Wilson who has been on the ANZMES committee for well over 20 years has now stepped down. A very, very special thanks go to Heather for her hard work and time spent on the committee and time spent helping people and their whanau, it is much appreciated. After the AGM was announced closed a presentation was played of Heather’s farewell which was held online and in person in Dunedin on Friday 3rd November 2023.

Dr Sarah Dalziel and Ken Jolly both continue as ex officio Medical Advisor’s to ANZMES. We would like to sincerely thank Sarah and Ken for their time and effort to help answer any queries we may have in the medical field. 

Membership Fees for 2024 have remained unchanged, they are set at:

  • $10.00 for Full membership
  • $5.00 for Concessionary membership
  • $5.00 for Family members
  • A free Helping Hand option will be available for people who suffer severe financial hardship.

After the AGM had finished, Dr Sarah Dalziel gave a presentation on her attendance at the 3rd ME/CFS International Conference 2023: RID – Research Innovation and Discovery. 

YouTube links to the AGM attached below
AGM 2023 – 1 of 3
AGM 2023 – 2 of 3
AGM 2033 – 3 of 3

ANZMES AGM – Saturday 18th November 2023

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All are welcome to the ANZMES AGM to be held via ZOOM this year, Saturday 18th November starting at 1pm.

Featuring guest speaker Dr Sarah Dalziel talking about attending the 3rd ME/CFS International Conference 2023: RID – Research Innovation and Discovery.

Simply click the link below to join (if joining from mobile, it may ask you to download the Zoom app).Details below 🙂

Join Zoom Meeting

https://us06web.zoom.us/j/83551071674?pwd=d2piQ1A4cFkvcklnbUJFU3MwL3Nwdz09

Meeting ID: 835 5107 1674

Passcode: 787146

Press Release – ANZMES Awards Academics 25K Grants to Boost ME Research 2023

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For immediate release – 18/09/2023

Two New Zealand researchers have been chosen to receive the Associated New Zealand Myalgic
Encephalomyelitis Society (ANZMES) annual grant of $25,000 to undertake vital research into
increasing understanding of Myalgic Encephalomyelitis (ME, also known as Chronic Fatigue
Syndrome), in Aotearoa.

ANZMES, the National Advisory on ME, launched the new grant and scholarship programme for
postgraduate students and academic researchers this year – aimed at supporting those
interested in researching ME and long COVID. With six funding opportunities available, ANZMES
encouraged applications from those seeking to undertake research that furthers understanding,
treatment, or prevention of ME and long COVID, including two $25,000 grants and four $5,000
scholarships to support research and study costs.


The 2023 Grant recipients are:
● Principal investigator: Dr. Nicholas Bowden, Research Fellow, Department of Women’s and
Children’s Health, University of Otago (pictured below. Photo credit: University of Otago).


Co investigators: Keith McLeod, Associate Principal, Kōtātā Insight.
Dr. Rosamund Vallings, retired GP, Howick Health and Medical
Centre.
Emeritus Professor Warren Tate, Department of Biochemistry,
University of Otago.
Professor Barry Taylor, Department of Women’s and Children’s
Health, University of Otago.
Francisca Anns, PhD Candidate, COMPASS Research Centre,
University of Auckland.


The study will investigate the health, labour market, and social service use of people with
ME, in NZ, through a population study.
Dr. Bowden says, “we are excited and grateful to receive this grant to undertake what we believe
is an important piece of research, providing foundational population-level evidence on health,
labour market, and social service outcomes for those with ME/CFS in Aotearoa/New Zealand for
the first time.”


● Principal investigator: Dr. Lynette Hodges, Senior Lecturer School of Sport, Exercise and
Nutrition, Massey University, Registered Clinical Exercise Physiologist (pictured below.
Photo credit: Massey University).


The study will investigate activity and energy management and
the hallmark symptom post-exertional malaise (PEM), in people
with ME through an observational study that assesses exertion
during normal daily activities of living, such as doing dishes or
laundry.

Dr. Hodges says, “I am so thrilled to learn that my research
application was chosen. I hope that this research will be able
to be of benefit to those with ME/CFS. As a Clinical Exercise
Physiologist, I am keen to help people live their best lives and hope that this study will develop a
better understanding of how activities of daily living affect the physiology of those living with
ME/CFS.”

Dr. Bowden and Dr. Hodges will both receive the $25,000 Grants through their respective
universities, to carry out their research projects.

ANZMES President, Fiona Charlton, says, these investments will help facilitate a crucial source of
New Zealand based research, furthering our understanding of the disabling condition.

“We are really pleased by the calibre of the work proposed by both recipients.
“With Dr. Bowden’s work, for the first time we will have a foundational study that offers insight into the lives and experiences of people with ME in Aotearoa.

“We understand the burden of disease from an international research perspective but New
Zealand based studies are lacking.

“Research into PEM and activity management will also be invaluable for both patients and health
professionals and will have implications for long COVID management and recovery.

“While we did not receive any scholarship applications, we encourage postgraduate students to
consider their Masters/PhD topics now, for next year’s funding round. In programs with relatively
low costs, scholarships can be used to help pay fees or study and living expenses,” says Charlton.

ME is a complex, debilitating and often misunderstood medical condition and although millions of
people suffer with the illness worldwide, including a significant population in New Zealand, there
is remarkably little research or funding available.

This ANZMES funding programme was made possible by the generous support of members.

The Grant was awarded by ANZMES on the recommendation of their Grants and Scholarships
Subcommittee.

Next year’s funding applications open May 31st.
Visit anzmes.org.nz for more information, grant regulations, and application forms.


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 we?
We are the National Advisory on ME in Aotearoa/New Zealand. With four decades of knowledge
and experience, we are the trusted leaders in ME education, representation, and research. Our
expertise comes from a reputable medical team of advisors, including a world renowned expert
and MNZM recipient, a fellow of the Royal NZ College of General Practitioners (RNZCGP) and a
network of academic researchers, clinicians, and representatives from the ME community. The
executive committee comprises experts in their respective fields for governance, policy,
leadership, representation, and education.

Always a trail-blazer, it was the first ME charity of its kind in the world, established in 1980, as
ANZMES, to provide support, information dissemination, and representation, achieving past
outcomes through dedication, passion, time, and knowledge of lived experience. Today, the
organisation leads as a Royal New Zealand College of General Practitioners (RNZCGP) Continuing
Medical Education (CME) Registered Provider, proud funder of vital research, and steward of the
community voice.
We continue to disseminate evidence-based information nationally, and represent the ME voice
globally as a founding member of the World ME Alliance through advocacy and leadership.
ANZMES latest education programme for health professionals – Know M.E. – is a video podcast
and news series featuring up-to-date, evidence based research and information on ME and Post
COVID Conditions.

Press Release – ANZMES welcomes HSC recommendations for improved access to disability services for people with ME/CFS.

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For immediate release – 22/08/2023

Petition response: ANZMES welcomes Committee recommendations for improved access to disability services for people with ME/CFS

ANZMES, the National Advisory on Myalgic Encephalomyelitis (ME), has welcomed the Health Select Committee’s (HSC) response to its petition delivered in September 2022, calling on the Government to reclassify ME as a disability.

The Health Select Committee presented its report to parliament on 17th August 2023, sending a strong message acknowledging ANZMES petition to reclassify ME – also known as Chronic Fatigue Syndrome (CFS) – as a disability with the recommendation that eligibility criteria for disability services be amended.

The 10 page HSC Report recommends that the Government take note stating “we understand that ME/CFS meets the Government’s definition of a disability. We therefore, encourage Whaikaha to consider amending its eligibility criteria to enable people with ME/CFS to access Whaikaha-funded disability support services.”

The Report also acknowledged concerns raised by ANZMES that the current classification and system is flawed with complicated assessment processes and policies and disparity between regions causing access inequality.

ANZMES President Fiona Charlton says the acknowledgement and recommendations are “a step in the right direction.”

“The struggle is real for so many people with ME and improving access to Whaikaha-funded support services could give so much relief to them.”

The HSC Report acknowledged that the eligibility criteria differ between Whaikaha and Te Whatu Ora-funded services, resulting in inequitable access.

The Report also states that a person does not require a classified disability to access health services, however in practice ANZMES has found that many with ME/CFS are denied help, despite the obvious need. ANZMES understand that support needs to be prioritised but at present, due to a misconception around the severity of the illness and the lack of functionality that results, many are seen as low on the priority scale.

ANZMES plans to continue to discuss this with the government and Whaikaha and would like them to consider working together to improve current assessment pathways and streamline the process to reduce access inequity across the country.

People with this debilitating condition face a barrier to support under the current classification of “chronic illness” and as a result experience poor quality of life and health inequity. With increasing numbers of people with long COVID (LC) being diagnosed with ME/CFS the existing support through nonprofit organisations is set to become unmanageable, with case numbers still rising.

People with ME want to see the actual implementation of these recommendations. Practical help is urgently needed for this growing under-supported, disabled community that could lead to a better prognosis and better quality of life.

To view the full report:

HSC-2022-Final-report-Petition-of-ANZMES

——————————————————————————–

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.

ME ANZMES logo with albatross bird representing support

Who are ANZMES?

The Associated New Zealand ME Society (ANZMES) has been providing information, awareness for ME, funding research, and advocating for people with ME for the past 43 years (since 1980). As the National Advisory on ME in Aotearoa/New Zealand, ANZMES disseminates evidence-based information nationally, and represents the ME 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.

————————————————————————————-

For more information contact

info@anzmes.org.nz

BenefitME

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CivicTheme demo logo

BenefitMe is a new website aimed at helping people find what benefits they can receive.

There are lots of Work and Income benefits for people who need help in Aotearoa New Zealand, but it can be hard to know which ones you can get. BenefitMe helps you find out what you’re eligible for and what happens if things in your life change.

BenefitMe is a community effort to put some power back into the hands of the public, so anyone can find the support and services they’re legally eligible for and be more able to engage from a position of confidence with government departments.

Payments currently supported:                                     

  • JobSeeker    
  • Sole Parent Support                                       
  • Disability Allowance
  • Accommodation Supplement 
  • Emergency Benefit (see Discretionary benefits)

BenefitMe is an initiative by the Digital Aotearoa Collective (DAC), a civil society group committed to addressing injustice and improving wellbeing in Aotearoa New Zealand. Click the link to find more about BenefitMe

ANZMES release Resources for Primary Care

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ME/CFS and long COVID in Primary Care

ANZMES releases two new resources to guide assessment and management of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and long COVID.

ANZMES (the national advisory for ME/CFS and a RNZCGP registered provider of continuing education) has released two short reference guides for primary care. These resources offer a snapshot of the key aspects of diagnosis, assessment, symptom management, comorbidities, and care and support planning.

“ME/CFS is a complex and often misunderstood condition, so the aim of this one page resource is to provide a simple reference guide for busy health professionals. We believe that education is key to improving outcomes for patients,” says ANZMES president, Fiona Charlton.

“Although assessment and evaluation for long COVID differs to that of ME/CFS, the management of long COVID, when there is no organ damage, is very similar to the management of ME/CFS. Utilising the expertise of our medical team, we provide a separate one page resource for long COVID in primary care.” she says.

ME-in-Primary-Care-ResourceDownload
LC-in-Primary-Care-ResourceDownload

ME/CFS

long COVID

Education for ME/CFS and long COVID.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Definition

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a long-term multi-systemic illness involving the nervous, endocrine, autonomic, and immune systems. The symptoms can range from mild to severe. This guide is designed to help GPs assess and manage ME/CFS and can be used in conjunction with the most current Diagnostic and Management Guidelines for ME/CFS.

Diagnostic Criteria

Despite there being over 20 different types of criteria developed over the past few decades, the criteria produced by the Institute of Medicine, in 2015, is considered the easiest, quickest, and most relevant criteria for a diagnosis of ME/CFS. This stipulates that three primary symptoms must be present: 1) post exertional malaise (PEM)  2) unexplained fatigue 3) unrefreshing sleep. At least one of either orthostatic intolerance or cognitive impairment must also be present. Symptoms must be present for at least six months, be moderate to severe and present 50% of the time.

The symptoms of a number of diseases can mimic ME/CFS, therefore it is important to conduct differential diagnosis to rule out other conditions first (for example,other fatiguing illnesses – anaemia, autoimmune disease, cardiac disease, endocrine disorders, malignancy, rheumatological disorders, neurological disorders – (such as MS, Parkinsons), primary sleep disorder, depression. Routine blood tests and urinalysis will help with this and it is important to note that with ME/CFS these standard tests are often within normal range.

During the acute phase of ME/CFS lymph node palpation may demonstrate slight enlargement. Although this reduces as the illness continues, patients may experience ongoing tenderness and pressure pain points.

Comorbidities

ME/CFS has common comorbidities such as Fibromyalgia (an overlapping condition), dysautonomia, allergies, irritable bowel syndrome (IBS), sleep disorders, Ehlers Danlos Syndrome or hypermobility, and multiple chemical sensitivities (MCS). However the presence of post-exertional malaise and symptom exacerbation, a key illness feature, increases the likelihood of ME/CFS as the correct diagnosis.The NASA Lean Test or the Active Stand Test are useful for diagnosing dysautonomia, such as neurally mediated hypotension or postural orthostatic tachycardia syndrome.

Triggers

ME/CFS has multiple triggers. The virus most associated with this illness is Epstein Barr (mononucleosis/glandular fever), however other viruses (for example, SARS-1, cytomegalovirus) and bacterial infections (for example, lyme, Coxiellia burnetti) are also associated, as are genetics, and environmental factors such as toxic chemical exposure or trauma (physical/emotional). ME/CFS can also be triggered by anaesthesia and surgical procedures.

Symptom Management

ME/CFS is a highly individualised illness, requiring a personalised, patient-centred approach. As there are many symptoms it is useful, in consultation with the patient, to identify the most pressing symptoms and tackle one at a time, per appointment. The main symptoms that can be managed with regular monitoring and review are: pain, sleep, stress, and general health measures. However, the key tool to introduce to patients is pacing – a self-management technique that balances activity and rest to help reduce or prevent PEM. Energy management helps support rehabilitation.

Everyone’s available energy limits are unique and what one person with ME/CFS can do in a day may be very different from another person with ME/CFS. During the course of the illness the energy envelope will fluctuate alongside the severity of symptoms. The more severe the symptoms, the less energy an individual has to do even a basic activity, such as showering or making a meal. In the acute phase, with appropriate pacing, an ME/CFS patient can recover. If symptoms remain longer than 18 months, continued activity pacing is recommended. 

Care and Support Planning

Care and support planning is crucial for a patient-centred approach. It is important to assess their individual circumstances and needs and educate the patient on symptoms and prognosis. Empathy is key, and acknowledging the reality of living with ME/CFS can build an effective therapeutic relationship, as can recognising that they may have experienced prejudice or disbelief. It is very important to include written handouts to help counter the cognitive impairments, providing the patient with a summary of your discussion and management plan.Patients may also require work certificates, insurance support, and letters to employers or schools.

When planning care and support a team-centred approach is beneficial, incorporating specialists, physiotherapists, occupational therapists, counsellors, and other health professionals as required. Local ME/CFS support groups can help patients with socialisation, understanding, and support. You can find a list of regional groups on the ANZMES website.

Additional resources with useful information, to inform your clinic practice, include local Health Pathways, the 2021 NICE guidelines,1 and Clinicians Primer.2  ANZMES is currently offering ‘Know M.E.’ – a video podcast and news series, which enables clinicians to earn credits whilst they learn about ME/CFS and post COVID conditions.

References

1 National Institute for Health and Care Excellence.(2022) ‘Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis andManagement’. 
https://www.nice.org.uk/guidance/ng206/resources/myalgic-encephalomyelitis-or-encephalopathychronic-fatigue-syndrome-diagnosis-and-management-pdf-66143718094021

2 Carruthers, B. M. et al. (2012). Myalgic encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine. 270, 327–338.

long COVID

Definition and Trigger

Long COVID has one trigger, the SARS-CoV-2 virus, also known as post-acute sequelae of SARS-CoV-2 or Post COVID condition, or long haul COVID are terms to describe long-term unexplained symptoms following infection with COVID-19 virus and are symptoms characteristic of ME/CFS and post viral syndromes.

Diagnostic Criteria

Long COVID is defined as symptoms consistent with COVID-19 infection that persist for more than 12 weeks after initial infection that cannot be explained by an alternative diagnosis. Symptoms may last weeks, months, or years, and may fluctuate as in ME/CFS. Some people with long COVID, who are still experiencing symptoms after six months, may fit the diagnostic criteria for ME/CFS. The Ministry of Health has published guidelines.

Cormorbidities

As long COVID is relatively new, there is not evidence to suggest that it has typical comorbidities in the way ME/CFS does. It may however, have issues related to organ damage or upper respiratory tract disorders, that are unique to this particular virus.

Symptom Management

People with long COVID experience a wide range of symptoms, with potentially multiple body systems involved, as is the case with ME/CFS. Research is showing that people with long COVID may experience more than 200 different symptoms, and many of them overlap with the experience of people with ME/CFS.

Breathing disorders and upper respiratory tract complications differentiate long COVID from ME/CFS. A referral to a cardio respiratory physio is helpful for breathing pattern assessment.

The cardinal symptom that characterises ME/CFS is post exertional malaise (PEM), which is a worsening of symptoms after physical, mental, or emotional activity, which can occur immediately or up to 72 hours after the activity. People with long COVID are also experiencing PEM or what is more commonly referred to for this subgroup as post exertional symptom exacerbation (PESE). It is very important, despite the patient’s strong desire to return to work, sport, and daily routines, to ensure that they follow a slow, steady, and measured return to activity. Patients must be able to perform daily activities (washing, dressing, meal prep etc) without PESE before a careful, symptom paced return to exercise is considered. An activity diary is very helpful to track symptoms and energy levels, to measure what types of activity induce PESE and those that do not. Referrals to occupational therapists are very helpful for energy saving devices, and support with learning to pace activities.

Care and Support Planning

As with ME/CFS (see information above), a patient-centred approach is paramount. Before a COVID-19 infection, the majority of people experiencing long COVID were healthy, fit, and of working-age, living active lifestyles. The sudden change in functionality and energy can be a big shock and there is much higher incidence of anxiety and depression for people with long COVID when compared to those with ME/CFS. Wellbeingsupport.health.nz is a great resource for free early intervention for mild to moderate mental health support.

The ME/CFS support groups and organisations throughout Aotearoa/NZ have opened their doors to people with long COVID – offering support, advocacy, advice, information, and education.

CME Education

For health professionals wanting to learn more about ME/CFS and long COVID, ANZMES is currently offering ‘Know M.E.’ – a video podcast and news series, which enables clinicians to earn CME/CPD credits whilst they learn about ME/CFS and post COVID conditions.

Visit ANZMES medical professionals page for more information.

ANZMES is the national advisory for ME/CFS offering representation and advocacy, national level support, education, and research funding. ANZMES is a RNZCGP registered provider of continuing education.

ANZMES speaks on RNZ about reclassification

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ANZMES President, Fiona Charlton spoke alongside Emeritus Professor Warren Tate from the University of Otago, and patient advocate Tom Harris to Kathryn Ryan on Nine to Noon on Radio New Zealand this morning.

You can view the Radio New Zealand interview news bulletin here: https://www.rnz.co.nz/national/programmes/ninetonoon/audio/2018892129/the-fight-to-get-me-chronic-fatigue-syndrome-classified

You can listen to the interview episode here:
https://www.rnz.co.nz/audio/player?audio_id=2018892129

The petition to reclassify Myalgic Encephalomyelitis to a disability is currently with the Health Select Committee, who are due to provide their recommendations to parliament in the coming months. This follows an oral submission to them by ANZMES on May 3rd 2023, a written submission presented in October 2022, and the petition with 6,444 signatures, submitted to parliament in September 2022.

ANZMES created this petition to draw attention to the fact that the system is not working for people with ME/CFS (pwME). Many fall through the cracks, many rely on whānau to care for them. Those who aren’t lucky enough to have family to care for them, experience post exertional malaise crashes regularly just trying to make a meal or do laundry. This means they’re in a constant state of unwellness with a myriad of over 100 symptoms. You can learn more about post exertional malaise on ANZMES World ME Day page.

Put simply:

ME/CFS fits the definition for disability
BUT
DOES NOT fit the criteria to access disability support services.

Those same support services are available under Long Term Support – Chronic Health Conditions
BUT
People with ME/CFS DO NOT fit the NASC* criteria to access them.

The system is not working for people with ME/CFS.

*NASC – Needs Assessment Service Coordination.

ME/CFS fits all definitions for disability created by the United Nations, The World Health Organisation, The Human Rights Act 1993, Statistics NZ, and the NZ government’s own definition (copied below).
A disability is an impairment — physical, intellectual or sensory — that lasts
for more than 6 months and limits your ability to carry out day-to-day activities.

pwME experience physical, cognitive, and sensory impairments.
The condition for most, is chronic, for some it is lifelong.
To be diagnosed with ME/CFS, one must experience at least a 50% reduction in ability to function (compared with pre-illness capacity).

ME/CFS fits the definition of disability. ME/CFS is a disability.

What would it mean to reclassify?
A change in classification would be a lifeline to dedicated support and wider acknowledgement that this illness is disabling, providing fairer access to established support and care.

Being classified as a disability demonstrates the government understands how truly disabling this condition is.
It legitimises ME/CFS as a physiological disease, which would foster the standardising of healthcare for pwME. Legitimising ME/CFS as the disability it is, should override and negate outdated opinions and treatments. It would provide pwME protection of rights as a disabled person.

It would ensure the government upholds its legal obligation to adhere to the United Nations (UNCRPD) Report (September 2022) which states that ME/CFS should be included in disability policies and supported by disability services.

It will enable pwME to fit into the criteria for NASC assessment for home help services. Access to services equates to intervention that promotes recovery or at the very least improvement in symptom management. When a person is constantly exerting beyond their energy capabilities, they crash. This is a health issue. NASC assessments are not conducted by the Ministry of Social Development, they are conducted through hospitals and the healthcare system. It is a healthcare issue.

ANZMES President, Fiona Charlton states “Members of Parliament are elected by the people, for the people. It is a democratic government’s role to ensure all policies, procedures, and programmes meet the needs of all New Zealanders. People with ME/CFS are New Zealanders. Yet, their needs are not being met. There is no-one in parliament representing us. We have to advocate for ourselves, yet who is listening? Who in parliament will stand up for and advocate for the needs of pwME? Who will ensure our needs are met?”

In 2012, following a petition by ANZMES Executive Committee member, Wendy Matthews, the then Health Select Committee made the recommendation to reclassify ME/CFS as a disability.

This was NOT implemented by government.

Fiona Charlton states “We have hope that the Health Select Committee will once again make the recommendation to reclassify ME/CFS as a disability.
However this time, we also urge these committee members to use their roles within parliament to ensure the government implements the advice.”

ANZMES invite members of parliament to speak with them. ANZMES has the knowledge, expertise, and lived experience. ANZMES has world-renowned clinicians on the executive committee and medical team, and researchers like Emeritus Professor Warren Tate are available for discussions.

ANZMES current Royal NZ College of General Practitioners (RNZCGP) CME (continuing medical education) accredited series: Know M.E. is freely available to all health professionals seeking to understand the biomedical, physiological nature of ME/CFS and evidence-based management strategies.

The information is available for a considered, evidence-based response from parliament to meet the needs of people with ME/CFS. ANZMES offers solutions in its written submission (October 2022), and written report submitted to Health and Disability Ministers and Commissioners in July 2022. You can view the oral submission here: anzmes-speaks-to-parliament.

ANZMES looks forward to the recommendations from the Health Select Committee in the coming months.

ANZMES is dedicated to continually advocating, supporting, educating, and funding research for pwME.

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.

Grant and Scholarship Programme

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ANZMES Launches New Grant and Scholarship Programme to Boost ME/CFS and long COVID Research

ANZMES, New Zealand’s national advisory for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), is pleased to announce the launch of a new grant and scholarship programme for postgraduate students and academic researchers. The programme is aimed at supporting those who are interested in researching ME/CFS and long COVID.

woman in lab coat with back to camera, in a laboratory with test tubes and equipment in foreground and background.

There will be six funding opportunities awarded each year to Postgraduates who undertake research that furthers understanding, treatment, or prevention of ME/CFS and long COVID, including two $25,000 grants to support laboratory research studies and four $5,000 scholarships to support students undertaking research projects. Academic researchers can also apply for the grants.

ME/CFS is a debilitating chronic condition involving overwhelming ongoing fatigue. Although millions of people suffer with the illness worldwide there is remarkably little research or funding available.  

ANZMES President, Fiona Charlton, says “we are excited to launch this new programme, which aims to support the next generation of researchers and innovators to build a vital source of New Zealand based research, contributing to knowledge and scientific progress that will benefit the community. 

“Promoting and investing in ME/CFS-focused research is a core objective of the organisation. Our funding programme is made possible by the support of our members.”

Two grants are being offered for postgraduate studies or academic research in either the Faculty of Science, Faculty of Medical and Health Sciences, Faculty of Public Health, or Faculty of Sport and Exercise Science to contribute towards the costs of laboratory analysis for a research project on ME/CFS or ME/CFS and long COVID.

Four scholarship awards will be offered each year to students to contribute towards the expenses of studying for a postgraduate degree in the Faculty of Health Sciences, Public Health or Humanities/Social Sciences for a student who can demonstrate financial project cost requirements or study expenses and who are conducting study/research on ME/CFS or ME/CFS and long COVID.

Applicants will be selected by ANZMES on the recommendation of their Scholarships Subcommittee.

Applications for 2023 awards open 31 May and close 31 July.
Further information and application forms are available at https://anzmes.org.nz/research-funding-programme

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