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Bequest A gift of any size in your Will, can increase quality of life for many people affected by ME/CFS and Long Covid. MECFS Canterbury recommends talking to a solicitor to write or update your Will. They will require our registered charity number to ensure your gift goes to the right place. Before getting in touch with them, you could start thinking about how you would like to give. You may want to consider giving a: Residual gift After providing for your family and loved ones, you can gift the remainder of your estate, or part of it, to MECFS Canterbury. Percentage You could divide your estate between a number of people and charitable organisations by allocating a percentage to each one. Specific gift This could be a specific sum, jewellery, real estate, shares or anything else you possess. You will also need this information: Our registered address is MECFS Canterbury, PO Box 10090, Phillipstown, Christchurch 8145. Our registered charity number is CC57086. If you would like any further information, or if you would like to talk to our Manager in confidence, please call 020 4091 9153, or email info@mecfscanterbury.nz . Please let us know of your intentions It would be very helpful for us if you let us know your intentions. Leaving a gift to us means a lot and we would like to be able to thank you for this. CONTACT US On behalf of our ME/CFS community, thank you for your consideration.

Volunteer Outreach Services We have a growing team of wonderful volunteers in our Outreach Service who provide one-off or regular practical support for people affected by ME/CFS. Our kind volunteers help with tasks such as housework, dog-walking, gardening, friendly company, and technical support. This support can help clients to stabilise symptoms, manage obligations and domestic activities, and reduce isolation. We won’t always have a volunteer to match with you in your area, but if you let us know what your needs are, we can certainly try to find someone. All our volunteers have a clean result from a Police Check, are given information about ME/CFS, and sign confidentiality and other volunteer agreements. A quick note to set expectations of our Outreach Service... T here are some factors affecting the capacity of this service currently: It is coordinated by a part time volunteer, and sometimes the coordinator position itself is vacant. It takes time to onboard volunteers and then to match them with clients that need the help offered in the suburb needed. Volunteers do not always stay for long, as they may move onto employment or further study. However, please do put your name on the list if you are interested in this support. We can't guarantee we will find a volunteer for you, but it makes it possible if we know what your needs are. To access this service: To refer yourself to the Volunteer Outreach Service, sign up as a member and note on the form what help would be beneficial, and one of our team will be in touch. FILL OUT OUR MEMBERSHIP FORM CONTACT US If you are already a member, send us an email about the help you are needing.

When considering what supplements and treatments might be beneficial, we can refer to expert ME/CFS clinicians around the world and anecdotal evidence from the ME/CFS community, along with what published research there is. But care must be taken to always consider the individual, the risk of harm, and to approach any new treatment safely. We offer some guidelines for this. Supplements and Treatments In a perfect world, it would be understood what each of our bodies need to enable improvement and recovery. In this future world, there will be duplicated, published peer-reviewed clinical trials to back up any treatment recommendations that might be made. There would also be medical professionals who are knowledgeable in assessing each person's health and who have the expertise to manage symptoms and monitor treatments. We certainly aren’t there yet. Right now, when considering what supplements and treatments might be beneficial, we can refer to expert ME/CFS clinicians around the world and anecdotal evidence from the ME/CFS community, along with what published research there is. But care must be taken to always consider the individual, the risk of harm, and to approach any new treatment safely. We offer some guidelines for this below. DISCLAIMER: MECFS Canterbury does not provide recommendations for any treatments for your particular situation on this website. Any advice, either explicit or implied, is not intended to replace the qualified medical advice that is necessary for each individual. Please discuss any lifestyle and treatment changes with your doctor first. MECFS Canterbury does not accept any responsibility for any treatment undertaken by readers of any content or for any error or omission in connection with an article or content published on this website. What Lived Experience Tells Us From decades of people with ME/CFS and their doctors sharing what may help, we can make these points: Pacing our activity and energy expenditure, and including rest periods in each day, seems to be the best treatment protocol to manage symptoms and improve quality of life. Managing stress and calming the parasympathetic system through relaxation therapies often helps. People often report a supplement may be helpful for a period of time, but then it loses its impact. That initial period of respite may still be of high value. Stopping and then starting again may restart effectiveness. Supplements and therapies can cost a lot – at a time when we are likely to have limited financial resources. Given many treatments do not have evidence to support their use, will not work for every individual, or not for long, it can be difficult justifying investing in them. Purchasing a mobility aid or hiring a cleaner to help pacing, may achieve more. It is likely that there are subtypes of ME/CFS, and these may require different treatment pathways. People are often diagnosed with ME/CFS when a differential diagnosis or comorbid condition should have been identified. e.g. EDS, MS. The Risk of Harm Some supplements, treatments and therapies can DO HARM: While “natural” medicines and conventional pharmaceuticals can be helpful, they can also be contraindicated or dangerous if you have other diagnoses or are on other medication. Examples: Did you know that anecdotally, even basic supplements like magnesium, vitamin D and C can have negative health effects? Did you know that an estimated 1 in 250 people in NZ are at risk of developing hereditary haemochromatosis (toxic iron overload) so should never take iron supplements? People with ME/CFS can be very sensitive to supplements and vitamins, so their response cannot be assumed or judged from the experience of others with ME/CFS, or the general public. Fillers in supplements (as an example, mag stearate) can affect people with ME/CFS badly. Stimulants may seem an intuitive choice, but they frequently backfire in ME/CFS, leading to a very brief boost followed by a crash. Some Neuro-linguistic programming (NLP) therapies encourage people to exceed their energy envelope and risk pushing people with ME/CFS into a more severe symptom level. Graded Exercise Therapy (GET) is contraindicated, and is harmful when exercise is increased and triggers PEM.. Guidelines for Introducing Something New We recommend that you consult with your GP before starting new treatments. Add only one supplement change at a time, so that it is easier to verify what is helping or not. Start supplements on extremely low doses, because many people with ME/CFS are hypersensitive. Stop supplements/treatment if any negative reactions/symptoms are experienced (please check with your GP if this needs to be done gradually) Monitor the use of supplements extremely carefully. Keep a journal prior to starting – it is so easy to miss or over-inflate impacts. Trial for 2 – 3 months. If unsure whether it is helping, stop for a period (in a way that is safe to do) and monitor any changes. Start Low. Go Slow. Keep a record. Potential Supplements and Medications This is a list of potential supplements that some ME/CFS patients can tolerate and have sometimes found helpful. Unfortunately, this does not mean they will be good or helpful for you. PLEASE talk to your doctor and refer to the risks and approach guidelines above before trailing. Vitamin D - for those housebound and don’t get enough sun, preferably after a vitamin D test. Magnesium malate - in evening for insomnia, but some forms can disturb sleep and bowels. Lypospheric Vitamin C or the cheaper standard Vitamin C - for immune support. Vitamin B12 and B multi - for brain fog and fatigue (supplements are considered less effective than injections). Refer to our B12 information leaflet . Electrolytes – for those with Orthostatic Intolerance symptoms. Extra salt can be a good alternative, unless you have high blood pressure. Your GP can prescribe Electral. Gut health tonic - for digestive issues. Iron - only when deficiency has been confirmed by a blood test. Co-Q10 - some people have found this effective for mitochondrial support. NAC (N-acetylecysteine) – enhances mitochondrial support. Antihistamines – particularly if signs of MCAS, Mast Cell Activation Syndrome. Melatonin slow release – for sleep support. Horopito therapeutics - for systemic Candida. Low Dose Naltrexone (LDN) – evidence for pain support, emerging evidence for fatigue support. Used 'off-label' in New Zealand. Refer to our LDN leaflet . Evening primrose oil - may be helpful in relieving joint pain. Mestinon (pyridostigmine bromide) - emerging evidence for supporting aerobic capacity, fatigue, muscle strength and mental clarity. Used 'off-label' in New Zealand. Refer to our Mestinon leaflet . Refer to our further reading list for more information about these recommendations. Potential Therapies This is a list of potential therapies that some ME/CFS patients have found helpful. Unfortunately, this does not mean they will be good or helpful for you. PLEASE talk to your health team and refer to the risks and safe approaches suggested in our guidelines above before trailing. Vagus Nerve Stimulation (VNS ) - calming the Sympathetic Nervous System (SNS), the fight /flight response in the Autonomic Nervous System (ANS). Breathing Techniques such as 4-7-8 breath - for calming your ANS. Also see our Mental Wellbeing section for relaxation therapies. Further Reading Clinical Care Guide from Bateman Horne Centre, USA, a 98 page document published 2025. Clinical Primer from IACFSME (International [Clinician] Association for CFS/ME), 2014. Particularly Section 5 Management and Treatment. List (crowd-sourced) of supplements & considerations for pwME including what research exists https://me-pedia.org/wiki/MEpedia:Contents#Herbs.2C_supplements_and_nutraceuticals Statement from M.E. Awareness NZ on alternative medicine and therapy programmes https://m.e.awareness.nz/position-statements Advice from ME Association UK, who are strongly evidence-based. They provide general guidance and leaflets covering various supplements, therapies and medications https://meassociation.org.uk/free-literature-downloads/ There are supplement recommendations in Dr Sarah Myhill’s book about ME, “It’s Mitochondria not hypochondria” (we have a copy in our library). Again, no researched evidence on these, just anecdotal evidence. 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Announcing updated guidance for clinicians in Canterbury and West Coast from Health NZ. We encourage health professionals who have access to HealthPathways to become familiar with the extended guidance for diagnosis, treatment and management of this debilitating condition. < Back New clinical guidance for ME/CFS on HealthPathways 12 May 2025 Announcing updated guidance for clinicians in Canterbury and West Coast from Health NZ. We encourage health professionals who have access to HealthPathways to become familiar with the extended guidance for diagnosis, treatment and management of this debilitating condition. 'HealthPathways' is an online system from Health NZ that GPs log into to view best-practice clinical advice for assessing and managing a wide range of health conditions and concerns. There is often standardised national content for a topic, with each region then providing local information to reflect local supports and services on the regions own view of the HealthPathways. We are excited to announce that the HealthPathways team published updated guidance for #MECFS (#MyalgicEncephalomyelitis / #ChronicFatigueSyndrome ) on the Canterbury Community HealthPathways website on 12th March 2025. This information is also available to GPs on the West Coast of NZ. The pathway includes current evidence-based best-practice clinical advice for health professionals. The update includes: • More information on criteria to help with diagnosis. • More information about assessing and supporting patients with severe ME/CFS. • Extended management guidance for specific symptoms. We encourage health professionals who have access to HealthPathways to become familiar with the extended guidance for diagnosis, treatment and management of this debilitating condition. Link: https://canterbury.communityhealthpathways.org/44978.htm Please reach out to MECFS Canterbury to access the latest research summaries and other guidance, or to assist you in other ways. ____________________________ We have prepared a letter about this new information for you to take to your GP, next time you visit. We want GPs to know about the new HealthPathway so that they can support you better. Click on this link to view and download the letter in our google drive... https://drive.google.com/file/d/19hkC_DkT4-7C0y2ALhgFFauTf9LZ6DR-/view?usp=drive_link ___________________________ FURTHER READING: To find out more, we recommend: ✦ For patients: www.healthinfo.org.nz/Chronic-fatigue-syndrome-CFS.htm ✦ Guidance from us: https://www.mecfscanterbury.nz/living-with-me-cfs ✦ CDC (USA): https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html ✦ NICE (UK): https://www.nice.org.uk/guidance/ng206 ✦ Mayo Clinic (USA): https://www.mayoclinicproceedings.org/article/s0025-6196(23)00402-0/fulltext ___________________________ DISCLAIMER: Please note that MECFS Canterbury does not recommend any treatments. Any advice, either explicit or implied, is not intended to replace qualified medical advice. We do not accept any responsibility for any treatment undertaken by readers of any articles or other content, or for any error or omission in connection with any content published on our social media. MECFS Canterbury is not responsible for the accuracy of content that we link to. The inclusion of such links does not imply endorsement by MECFS Canterbury. Previous Next

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. Do a physical exam or take blood tests to rule out any illnesses that may cause similar symptoms. 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 CANTERBURY GPS DOWNLOAD A LETTER FOR WEST COAST 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

Subscribe to our Newsletter Sign up to become a member to receive our bi-monthly newsletter. The newsletter includes information about managing and living with ME/CFS, latest research, our activities, plus more. BECOME A MEMBER Latest News 28 Oct 2021 NICE releases new guidance for ME/CFS The National Institute for Health and Care Excellence (NICE, UK) has today, Friday 29 October 2021, published the guideline for ME/CFS: diagnosis and management, after a robust 3 year review process. Read More 24 Oct 2021 Article in The Spinoff discussing support needed for people with long Covid Tom Harris, a member of MECFS Canterbury, writes for The Spinoff and asks ‘If you get long Covid, who’s going to help?’ Read More 4 Sept 2021 Mayo Clinic releases new consensus clinical guidance for ME/CFS The Mayo Clinic Proceedings publication has recently published a consensus recommendation article for ME/CFS written by the ME/CFS Clinician Coalition. It is exciting that another leading health care publication is sharing up-to-date evidence based information about ME/CFS. Read More 25 Jun 2021 New guidance from CDHB for physiotherapists 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. Read More 22 Dec 2020 New guidance for ME/CFS from CDHB for allied health professionals The Allied Healthways website provides allied health professionals with guidance for a range of health conditions and concerns. The website now includes up to date information about ME/CFS. Read More 10 Sept 2020 New public guidance from CDHB on ME/CFS Announcing updated information about Myalgic Encephalomyelitis /Chronic Fatigue Syndrome on the Healthinfo site for people living in Canterbury. This provides clear, reputable guidance from the CDHB about ME/CFS that will raise understanding and awareness. Read More 11 May 2020 ‘Years in Lockdown’ video for International ME Awareness Day, 12th May 2020 Many people living with ME/CFS live in permanent lockdown. When you move out of lockdown - and get back into a fulfilling life with a variety of choices and activities - we ask you to remember those that will stay in lockdown because they have ME/CFS. Read More 6 Dec 2019 New Guidance on ME/CFS for Canterbury GPs Canterbury District Health Board's diagnostic and management information for ME/CFS has now been updated with input from MECFS Canterbury. This provides GPs in the region with evidence-based guidance and best practice. Read More 6 Dec 2019 Christchurch chronic fatigue sufferer told it was all in her head Gillian Watson, an MECFS Canterbury member, recently sat down with Oliver Lewis from stuff.co.nz and detailed her experiences with the ME/CFS. Being told to keep pushing was detrimental. Read More