Contents

• Introduction

• Presentations

• Continuing Medical Education

• Clinical Guidelines

• Professional Assns

• Severe ME

• For Nurses

• For School Nurses

• For Physiotherapists

• For Mental Health Professionals

• For Anaesthetists

• Research

• Post-Covid Fatigue Syndromes

• Essential Watching

• Books

• Resources by M.E. Awareness NZ

Diagnosing ME

The National Academy of Medicine (formerly Institute of Medicine) diagnostic criteria were developed in 2015 specifically for use in clinical practice, and apply to both adults and children. Note that the IOM/NAM originally used the term Systemic Exertion Intolerance Disease (SEID) to refer to ME/CFS.

Diagnostic criteria (IOM 2015) require

1. Post-exertional malaise (PEM), which is an abnormal response to physical or cognitive exertion,

2. A substantial reduction or impairment in the ability to engage in pre-illness levels of activity (accompanied by fatigue),

3. Unrefreshing sleep, and

4. Cognitive impairment and/or orthostatic intolerance

Additional symptoms may be present and relevant for a treatment plan but are not diagnostic.

Managing ME

Key points are:

• Graded exercise therapy, GET, is no longer recommended for ME/CFS. Also refer:

  • Statement ‘Global move away from ineffective therapies for ME/CFS’, 21 August 2021
    Emeritus Professor Warren Tate, Biochemistry, University of Otago

  • Statement ‘ME/CFS and Exercise’, 2 September 2021
    Dr Lynette Hodges, Senior Lecturer in Sport and Exercise, Massey University

• Cognitive behavioural therapy, CBT, is no longer recommended as a treatment for ME/CFS. (Some patients may wish to access counselling to assist with adjustment to living with a debilitating chronic illness.)

View our ME Update prepared for Rotorua 2023 GP CME for a short management summary for ME/CFS including pacing, treatments and supports.

• A practical approach to understanding, assessing and managing ME/CFS, Dr Cathy Stephenson, 23 February 2022 webinar on My Health Hub for Mobile Health. Also available on Vimeo. CPD point available. 67 minute presentation covering

  • What we know (and don’t know) about ME/CFS, including some of the myths and pseudoscience that have surrounded it over the years

  • A systematic approach to diagnosis

  • How to support a patient with ME/CFS

  • Resources for patients and whānau

  • Where to go to learn more

• Supporting young people with ME/CFS, Dr Cathy Stephenson, Rose Silvester, and Noah. Podcast from the Goodfellow Unit, University of Auckland, 2023

• Management and supports for Post-Exertional Malaise in ME/CFS, Dr Cathy Stephenson GP, 24 minutes.

• Orthostatic Intolerance and ME/CFS, Dr Jenny Butler, 9th March 2022, hosted by MECFS Canterbury.

• From harm to help - promoting an evidence based shift in our understanding of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Dr Cathy Stephenson, RNZCGP General Practice Conference 2021

RNZCGP accredited CME (Continuing Medical Education)

• KNOW M.E. podcast news series from ANZMES (launched April 2023). Subscribe to receive news articles, case studies, podcasts and videos, quizzes, deep dive content, and research highlights.

• A practical approach to understanding, assessing and managing ME/CFS, Dr Cathy Stephenson, Webinar on My Health Hub for Mobile Health (23 February 2022). 1 RNZCGP credit

• NZ Doctor (3rd February 2021) ‘How to Treat’ article on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome 1 RNZCGP credit
  We have been given permission to share an A4 reprint of the article - visit our How to Treat ME/CFS page. Also available as online reading and accredited assessment on NZ Doctor.

• ThinkGP - Module 1 (Australia, 2021) "Busting the myths and redefining myalgic encephalomyelitis /chronic fatigue syndrome (ME/CFS)" 1 RNZCGP credit
  View our brief introduction to this RNZCGP-endorsed CME here.

• ThinkGP - Module 2 (Australia, 2021) "Ensuring a patient-centred approach to care for people living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)". 1 RNZCGP credit
  View our brief introduction to this RNZCGP-endorsed CME here.

International Continuing Medical Education

• Myalgic Encephalomyelitis / Chronic Fatigue Syndrome CPD, 10 clinical cases, StudyPRN (UK, May 2020)

• Unrest CME (USA, Nov 2018)

Quick Guides for Doctors:

For doctors new to caring for people with ME, we recommend supplementing these quick guides with Primers (see next section) and wider reading.

• Consult your local Health Pathways clinical guidance. All DHBs in New Zealand have updated the clinical guidance for ME/CFS in recent years.

• U.S. ME/CFS Clinician Coalition - Clinical Management guides
  The following consensus documents have been prepared by doctors with indepth clinical experience with ME. Currently, there is not much published high-quality evidence for the use of many treatments for ME.

  • Basics of Diagnosis and Treatment, 2020

  • Testing Recommendations, 2021

  • Treatment Recommendations, 2021

• About ME/CFS, Bateman Horne Center, US

• Excellent 2-page summary from #MEAction Diagnosis and Management of Myalgic Encephalomyelitis

• The US Centre for Disease Control (CDC) Information for Healthcare Providers’ page has links to most of the basic information that practitioners may need to understand assessment, diagnosis and management of ME/CFS. We recommend the following items in the Healthcare Provider Toolkit for ME/CFS:

  • Assessment Overview

  • What are ME/CFS Symptoms?

  • Managing Specific Symptoms of ME/CFS

  • Other Supportive Strategies for Living with ME/CFS

• Statement on Graded Exercise and CBT for ME/CFS from Emerge Australia.

• Our Guidance on PEM (post-exertional malaise) for Clinicians

• Article ‘Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS’ (2020)

  
  

Primers (comprehensive in-depth guides)

• Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management, NICE Guideline, 2021

• Primer for Clinical Practitioners from International Association for CFS/ME, 2014

• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer from Frontiers in Pediatrics, 2017

• Myalgic Encephalomyelitis - Adult and Paediatric: International Consensus Primer (ICP) for Medical Practitioners, 2012

• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management, Mayo Clinic Proceedings, Aug 2021 (14 pages + references)

• Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness , Institute of Medicine Report, 2015 (305 pages) and Report Guide for Clinicians (20 pages)

• ME/CFS/PVFS Clinical and Research Guide, ME Association (UK), 2020
  Ebook version available. This book includes comprehensive information covering research, diagnosis and management.

• IACFSME - International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis
  For researchers, clinicians and health care professionals interested in ME/CFS activities, and those involved in agencies related to ME/CFS

• Doctors with ME
  For medical practitioners, scientists and researchers in the field of Myalgic Encephalomyelitis

• Physios for ME
  Based in the UK, they welcome connections with physiotherapists from anywhere
  
  

• Severe and Very Severe ME/CFS in Norway: Symptom Burden and Access to Care, 2023

• Healthcare Journal: Special Issue "ME/CFS – the Severely and Very Severely Affected", 23 papers, 2021

• Severe & Very Severe ME/CFS documentary series, Dialogues for ME/CFS, UK, 2020-21

• We recommend the NZ Doctor article mentioned above. Visit How to Treat ME/CFS.

• Article ‘Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS’ (2020)

• Supporting young people with ME/CFS, Podcast from the Goodfellow Unit, University of Auckland, 2023

• Managing ME/CFS in Children and Adolescents, Factsheet for Healthcare Professionals, CDC

• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer from Frontiers in Pediatrics, 2017

• Online program Why Can't This Child Get to Class? Learn how ME/CFS keeps youth from attending school, Northeastern University, 3.5 hours

• Physios for ME, UK. See their website here

• Our articles on Post-Exertional Malaise and pacing:

  • PEM for Clinicians

  • PEM for patients

  • The Art and Science of pacing for pwME

• From Emerge Australia:

  • Statement on Graded Exercise and CBT for ME/CFS

  • Stop, Rest, Pace guidance

• Watch 2021 presentation by Dr Lynette Hodges, Massey University, on ‘The abnormal physiological responses to exercise in people with ME/CFS’ for University of Otago Research Seminar Series. Lnks to her research available on our NZ Research page.

• Watch Rachel Sullivan’s 2022 presentation on Exercise and ME for pwME.

• Article for clinicians (brief) on how the changing evidence for GET has led to GET no longer being recommended, and what to offer patients instead: https://doi.org/10.1007/s11606-019-05375-y

• Workwell Foundation library of resources including video presentations and published research papers covering what "exercise" people with ME can and cannot do.

• Documentaries about ME/CFS, Post-exertional malaise and Pacing from Dialogues for ME/CFS

• ME/CFS: What Psychiatrists & Psychologists need to know, Doctors with ME, 2022

• You and ME. An update on Myalgic Encephalomyelitis. This article was first published in the June 2018 edition of the Journal of the New Zealand College of Clinical Psychologists (NZCCP).

• Assessment and Treatment of Patients with ME/CFS: Clinical Guidelines for Psychiatrists, Eleanor Stein MD FRCP(C), 2005

• Recommendations for approaching Anesthesia or Surgery, Hunter-Hopkins Center, Charles W. Lapp MD

• See page 42, Appendix E for surgery guidelines in the Primer for Clinical Practitioners, International Association CFS/ME, 2014

International Research Overview Summaries

• 2019 ME/CFS research summary an abbreviated summary (5 pages plus references) of ME/CFS research findings from the last 10 years by the #MEAction Network

• 2018 ME/CFS research summary from Solve M.E. and the #MEAction Network

International Research Summaries

• ME/CFS research index and reviews from the ME Association (UK)

• Research Digest (issued fortnightly) from Emerge Australia

New Zealand Research

• Visit our list on www.m.e.awareness.nz/research

• Visit our list on www.m.e.awareness.nz/covid19-mecfs-longhaulers

• What is ME? Experts provide an overview 7-minute video (Broken Battery, 2020)

• Dialogues for a Neglected Illness have a library of 15 minute videos on ME/CFS, covering Severe ME, Post-exertional Malaise, etc. A UK Wellcome Public Engagement Fund Project

• Long Covid, PVFS & ME/CFS 8-minute video (Broken Battery, 2021)

• Unrest (Award-winning documentary, 2017). Available on NZ Netflix and iTunes.

• ME and PEM 3 minute video (Norges ME-forening - Rogaland Fylkeslag)

• What is ME/CFS? 6-minute video (Bateman Horne Center, 2020)

Also refer to our Conference List.

• Chronic Fatigue Syndrome M.E. Symptoms, Diagnosis, Management, Dr Rosamund Vallings MNZM, MB BS, Calico Publishing, 2020

• Doctor with M.E.: My journey with "Chronic Fatigue Syndrome", Dr Robin Hng

• ME/CFS/PVFS Clinical and Research Guide, ME Association (UK), 2020
  Ebook version available. This book includes comprehensive information covering research, diagnosis and management.

Info Sheets for GP Conferences:

• Rotorua GPCME 2021 - 2 page Handout & expanded information

Post Exertional Malaise - PEM guides:

• Guidance on PEM for Clinicians

• An Explanation of PEM for people with ME

• The Art and Science of Pacing for ME

Our Social Media Awareness Campaigns:

• May 2020 - International ME Awareness Day

• August 2019 - Severe ME Day

• May 2019 - International ME Awareness Day

Other:

• Key Facts about ME - View our infographic here