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Resources and Links
Take your time going through this information list. Just read or visit the content that is of interest to you.
We only share the best clinically accepted and verified guidelines and information for ME/CFS and Long Covid.
Be aware that a lot of content online or in books is not evidence-based, and that more research is needed to fully understand the causes and best treatments for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. What helps one person, will not necessarily help someone else.
Please refer to our ‘Living with ME/CFS’ content for practical advice on pacing and supports that may make a difference to your wellbeing and quality of life.
For Health Professionals
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Refer to your HealthPathways for regional clinical advice for ME/CFS.
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M.E. Awareness NZ has curated a list of information and resources for health professionals, including Continuing Medical Education that is endorsed by RNZCGP.
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NICE in the UK published updated guidelines for ME/CFS in 2021.
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CDC in the USA maintains advice and handouts about ME/CFS.
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Mayo Clinic in the USA have also published guidance for ME/CFS – Consensus Recommendations and Concise Review for Clinicians.
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Dialogues for a neglected illness project (UK) has produced a series of 15 minute videos covering different aspects of ME/CFS including Post-Exertional Malaise and the issues involved that have lead to poor care and insufficient research.
For Patients and Whānau
Subscribe to our channel!
Te Whatu Ora has provided online information about ME/CFS on HealthInfo.
The ‘What is ME/CFS?’ video from the Bateman Horne Center (ME/CFS specialist centre), USA, is under 6 minutes long and provides a basic introduction into the IOM 2015 diagnostic criteria for ME/CFS. It is intended as education for medical providers but is also a good introduction for patients and the public.
M.E. Awareness NZ has curated a list of resources for people affected by ME/CFS
Join ANZMES, the national advisory and support organisation for ME/CFS in New Zealand, to support their advocacy efforts.
The Unrest film tells the story of Jennifer Brea and others and what ME/CFS looks like behind the scenes. It also includes a history of the disease including contributions from Dr Nancy Klimas and Dr Ron Davis.
Our Youtube channel has a range of recorded presentations on a variety of topics from past education meetings. E.g. Gut Health, Orthostatic Intolerance.
For Long COVID
The Long Covid Support Tool, published by ME Support – NZ, is an excellent series of videos and resources. Useful for people with ME/CFS as well.
Long Covid Support Aotearoa provides information and community.
Self-guided online courses for Long COVID recovery developed by physiotherapists at Breathability, New Zealand.
Information from the Long Covid Physio, an international association.
'What is Long COVID? (and ME/CFS?)' from the ME Association UK.
For Parents
Join the private Facebook group NZ Carers for Young People with ME and related illnesses
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Listening to Families, who are based in Christchurch, have produced a series of short videos designed to support and answer questions for families exploring a diagnosis of ME/CFS and management for their child or teenager. 80 minutes in total, with 19 videos from 1 to 8 minutes long, covering a range of relevant topics.
For Young People
ME Support, based in Auckland, facilitate a free online Discord community for teens living with ME/CFS. Our nurses can refer you.
Connecting online with others
ME/CFS is a chronic complex condition that makes daily life difficult and causes social isolation. Online peer support groups can be helpful for people with ME/CFS as they can connect people who share similar experiences. People can come together online to socialise, share information and offer support to one another. It is okay to take a break from them as well, and shift our focus to other things.
New Zealand based online forums:
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Join our online peer support community in a private Facebook group for people affected by ME/CFS or related illness who live in Canterbury or the West Coast of New Zealand (or elsewhere in the South Island).
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Join the friendly Canterbury Fibromyalgia and CFS/ME Group to connect and find out about informal local social catchups.
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Join the national online community facilitated by ME Support – NZ, who are based in Auckland.
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Other groups you may wish to check out: NZ M.E/CFS Catch ups for a holistic approach;
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For parents, join NZCare4ME for carers of young people with ME/CFS and other similar chronic illnesses (such as POTS, MCAD, EDS, and Fibromyalgia).
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For young people, join a Facebook community for NZ Teens/Early 20's with ME/CFS and Related Illnesses, or CFS / Fibro: Young Adults Group for people aged 18 to 35 (not very active at present).
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For young people (aged 12-20) living with any illness or disability in NZ and Australia, and their siblings, the Livewire community provides safe social connection and positive distraction.
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If you are severely unwell with ME/CFS, join the NZ Severe Facebook community.
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For long COVID, join the Long Covid Support Aotearoa and Long Covid Kids New Zealand Facebook communities.
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For fibromyalgia, join Fibromyalgia NZ Support and the Fibromyalgia & CFS NZ Support Facebook communities.
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For Ehlers-Dahlos Syndrome, join the national Loosely speaking - Ehlers Danlos NZ support group, the South Island support hub, or other affinity support groups.
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For Mast Cell Activation Syndrome, join Mast Cell NZ.
International online forums:
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Phoenix Rising is the largest and oldest international online forum for complex chronic illnesses such as ME/CFS, fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases. It uses XenForo community platform, rather than Facebook.
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Science for ME focuses on scientific discussion but is also a useful place for support and advocacy. There are public and member-only areas within the forum. It uses the XenForo community platform, rather than Facebook.
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#MEAction, a global movement fighting for recognition, education and research for people with ME/CFS, has several international affinity groups on Facebook for people, such as pregnancy and parenting, seniors, and caregivers.
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For teens and young adults up to mid 20's, check out the Teens with ME/CFS and Related Illnesses, and Teens With Chronic Illnesses Facebook communities.
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If you have severe ME/CFS, join the international online support group.
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For parents of young people with ME/CFS, join the large Parents of Kids & Teens with ME/CFS and Related Illnesses Facebook community.
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For parents of adults with ME/CFS, join Parents of adult children with ME/CFS Facebook community.
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For long COVID, join COVID-19 Long Haulers Support Facebook community, and search for others.