Testimonials Feedback received from a member in our 2023 Annual Survey “I just feel amazed that the organisation exists. I know that if I have an issue related to CFS that I cannot resolve myself, there is someone I can ask who will understand, and who may know how to get me the help. I also appreciate the kind and social nature of much of the communication; this is a health condition but it affects every domain of our lives, and so the efforts to connect and facilitate care and fun and connection even beyond the healthcare domain feel especially profound. You’d only set up your organisation that way if you understood what weird and indirect impacts this illness can have on your life, so to me the whole thing communicates understanding and an approach of 'you are welcome here'. What a beautiful thing to have when you are dealing with such a complex and overwhelming illness."

Newsletters Our newsletter has been published for over 40 years! Currently, there are six issues each year in February, April, June, August, October and December. The newsletter contains updates on the activities of the organisation, information about managing and living with ME/CFS, latest research, plus more. We welcome contributions. Members can elect to receive the newsletter by post and / or by email. VIEW PAST ISSUES SEND US A CONTRIBUTION

Getting Diagnosed At this stage, there are no specific diagnostic tests available that can be done in a clinical setting to confirm ME/CFS. However, healthcare professionals can make a diagnosis by using the diagnostic criteria, excluding other possible conditions, and ensuring that post-exertional malaise (PEM) is present. VIEW THE DIAGNOSTIC CRITERIA Your doctor is likely to refer to the clinical advice for ME/CFS on the Health Pathways website provided by Te Whatu Ora | Health New Zealand and may: Ask about you and your family’s health history. Ask about anything you have tried that makes the symptoms better or worse. Suggest that you keep a diary of symptoms and activity. Carry out an examination to identify alternative underlying disorders. They may look for any weight changes, difficulty with self-care, and issues with heart rate and blood pressure when moving to an upright position, and also, check for lymphadenopathy, thyroid disease, cardiac or pulmonary disease, joint or connective tissue disease, and neurological issues such as myopathy and multiple sclerosis. Request baseline blood tests for CBC, CRP, ferritin, electrolytes, renal and liver function, calcium, magnesium, blood glucose/HbA1c, B12, vitamin D, thyroid function, coeliac antibodies. If your illness is post-viral, they may also test for Epstein-Barr virus, cytomegalovirus, and HIV. Depending on your symptoms, they may also test for immunoglobulins, antinuclear antibodies, rheumatoid titres, creatine kinase, and cortisol. Request an ECG and chest x-ray if you experience palpitations, chest pain or shortness of breath. Consider long COVID if your symptoms appear to have been triggered by COVID-19 infection. We have a lett e r that you can take to your GP to let them know about the new clinical guidelines for ME/CFS on the Health Pathways website. DOWNLOAD A LETTER FOR GPS Our Registered Nurse Service is available to support you when you are wondering if you have ME/CFS and are seeking a diagnosis. Our nurses work through the assessment process against the diagnostic criteria with you, and then, with your permission, can share the result with your GP. How we help For a comprehensive list of clinical primers and other resources for health professionals refer to: Link https://m.e.awareness.nz/resources-health-professionals/ PREVIOUS PAGE NEXT PAGE

About ME/CFS Myalgic Encephalomyelitis /Chronic Fatigue Syndrome WHAT IS ME/CFS GETTING DIAGNOSED DIAGNOSTIC CRITERIA SEVERITY ME/CFS AND LONG COVID

What is ME/CFS? Myalgic Encephalomyelitis / Chronic Fatigue Syndrome is a serious long-term, complex, multi-system illness. It affects people’s ability to do everyday tasks. Researchers have found that people with ME/CFS have: an abnormal physiological response to activity, altered immune function, impaired energy production, and changes in gut bacteria. People with ME/CFS experience a range of symptoms and these can be worsened by any kind of effort or activity. ME/CFS affects people of all ages, ethnicities, and genders. Conservatively, it is estimated that there are more than 20,000 people affected in New Zealand (4 in 1,000). We estimate that there are at least 2,661 people in Canterbury with ME/CFS, including 362 children and young people. This number will grow as a result of the Covid-19 pandemic. How do I say Myalgic Encephalomyelitis? It helps to break it up into small syllables… My–al-gic En–ceph–a–lo–myel–i-tis Possible Causes The causes and the specific pathologies of ME/CFS are not yet understood – there just hasn’t been enough research done. ME/CFS most often starts after an infectious illness such as glandular fever or Covid-19. Other factors may also be involved for some people: family genetics, environmental toxins, physical trauma (such as a car accident or surgery), and stress (physical, mental or emotional). Some people develop ME/CFS gradually. For others, it develops suddenly after the triggering event. Diagnostic Criteria (IOM 2015) Three primary symptoms are required for diagnosis : Greatly lowered ability to do activities that were usual before the illness: This drop in activity level occurs along with fatigue and must last six months or longer (3 months in children). Worsening of symptoms after physical or mental activity that would not have caused a problem before the illness: This is known as Post-Exertional Malaise (PEM). PEM is often delayed, typically happening 24-48 hours after exertion. Some people describe PEM as feeling like they have the flu. People may be house-bound or even completely bed-bound, especially during PEM. Sleep disturbance: People with ME/CFS do not feel refreshed after a full night’s sleep. At times, people with ME/CFS may have trouble falling asleep or staying asleep, may sleep for over 12 hours a day or need daytime naps, or may have a delayed sleep onset . In addition, at least one of the following symptoms are required : Problems with cognition: Most people with ME/CFS have trouble thinking quickly and concentrating for periods of time compared to prior to illness onset; there may be trouble finding words or slurring of speech, particularly during PEM. Orthostatic Intolerance: This is a worsening of symptoms while standing or sitting upright: This includes feeling lightheaded, dizzy, weak, or faint. There may be vision changes like blurring or seeing spots. GETTING DIAGNOSED Additional Symptoms Other common symptoms : These may be presen t but are not diagnostic. Chronic pain or fibromyalgia Tender lymph nodes in the neck or armpits Digestive issues like nausea, heartburn, diarrhoea, constipation, abdominal pain Muscle pain and aches and rapid muscle tiring Joint pain without swelling or redness Headaches, either new or worsening Nerve pain, felt as stabbing, burning, tingling, pins and needles A sore throat that happens often Chills and night sweats Allergies and sensitivities to foods and medications Sensitivity to chemicals, odours, light, noise, and other sensory inputs Comorbid Conditions It is not uncommon for people with ME/CFS to have other overlapping health conditions, including: Fibromyalgia, Irritable Bowel Syndrome (IBS), Postural Orthostatic Tachycardia Syndrome (POTS), allergies and chemical sensitivities, and Ehlers-Danlos Syndrome (EDS). PREVIOUS PAGE NEXT PAGE

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Theme for this issue is Long COVID. We highlight recent articles in the media and a new Long COVID Primary Care Resource < Back Our April 2026 newsletter is now available! 15 Apr 2026 Theme for this issue is Long COVID. We highlight recent articles in the media and a new Long COVID Primary Care Resource We hope that you find something of interest in our latest newsletter. The newsletter includes the following items: A new Long COVID Primary Care Resource Long COVID in the news Our new Medical Advisor Increased prescribing lengths Blue Sunday, the Tea Party for ME Invitation to enter our Crash Wear Design Competition Upcoming meetings plus more. 41.2 April 2026 Newsletter - Long COVID .pdf Download PDF • 2.22MB Previous Next

We are delighted to announce that physiotherapists who have access to the Allied Healthways website provided by the CDHB now have appropriate advice available in the PhysioFITT guidance for ME/CFS. < Back New guidance from CDHB for physiotherapists 25 Jun 2021 We are delighted to announce that physiotherapists who have access to the Allied Healthways website provided by the CDHB now have appropriate advice available in the PhysioFITT guidance for ME/CFS. We are grateful to the clinical editors from the Canterbury District Health Board who have worked with us recently to provide up-to-date guidance about ME/CFS for physiotherapists working with the PhysioFITT programme. This new guidance is available on the CDHB's Allied Healthways online platform, and will help health professionals to be aware of current understanding of this debilitating illness, and the need to move away from prior advice that is no longer recommended. Under the PhysioFITT program, physiotherapists assess the clinical context of the patient and deliver a tailored assessment and activity plan appropriate to their health condition(s). Key points made for ME/CFS clients: Avoid exercise tests that may trigger post-exertional malaise (PEM). Check for Orthostatic Intolerance. Graded Exercise Therapy (GET) is not recommended for ME/CFS. Exercise should be used for physical maintenance (core strength, bone density and enjoyment) and be at a level to avoid post-exertional malaise (PEM). If PEM is experienced frequently, consider reducing rather than increasing activity in order to improve overall wellbeing. It may be more helpful to focus on daily activities than formal exercise. Make #movementforlife safe for #MyalgicEncephalomyelitis #ChronicFatigueSyndrome Previous Next

Nurse Wendy Dragt shares guidelines for managing our energy when we live with a broken energy system < Back Recording for Energy Management presentation now available 20 Apr 2026 Nurse Wendy Dragt shares guidelines for managing our energy when we live with a broken energy system A presentation on Energy Management has been delivered around our region over the last month or so. A recording of nurse Wendy Dragt presenting this is now available to watch on our YouTube channel. The video is one hour long, so definitely pace yourself while watching! It has some really useful content and covers: Frameworks for understanding energy limits Pacing and life hacks 13 Strategies to manage the energy that you have Tools for pacing There are quite a few links to further reading and resources in the description for the video as well. https://youtu.be/orxAmVmt41I?si=-kIpXBPbYvOP6Tev Previous Next