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1: Is ME the same as CFS?
Answered August 2026
ME and CFS describe the same illness, but the terms come from different historical contexts. Myalgic Encephalomyelitis (ME) emphasises the neurological, immune, and muscle‑pain components of the condition and reflects its biomedical origins.
Chronic Fatigue Syndrome (CFS) was a name introduced by a US working group investigating a viral outbreak in Lake Tahoe, Nevada. It was intended as a temporary research label and was never meant to extend beyond that group. Over time, it became widely used in clinical settings — including in New Zealand — even though it does not capture the full complexity of the illness.
Internationally, ME is now the preferred term, and the patient community across the globe, also favours ME because it better reflects the biological nature of the condition.
In New Zealand, the term “Tapanui Flu” was also used historically, referring to a viral outbreak in Tapanui in the 1980s that resulted in cases of ME.
2: Can I recover from ME and LC?
Answered August 2026
Recovery looks different for every person. ME is usually long‑term, and while some people experience improvement or stabilisation over time, full recovery is uncommon. Many people find that careful pacing, sensory‑load management, and avoiding over‑exertion help them maintain a safer, more stable baseline.
For Long COVID, research suggests there is a window of improvement within the first 18 months to 2 years, especially when people are supported to rest early and avoid pushing through symptoms. Early intervention — including resting during the infectious phase and the following 4–6 week recovery period — may reduce the risk of developing long‑term post‑viral illness.
One reason ME often has a different trajectory is that diagnosis is frequently delayed, meaning people unknowingly continue to over‑exert during the early phase of illness. Repeated over‑exertion can worsen post‑viral symptoms and increase the likelihood of long‑term disability.
Whether living with ME or Long COVID, people remain highly capable, with hopes, goals, and a desire to work, study, and participate in life. Supportive environments, pacing, and appropriate accommodations can help individuals maintain purpose and quality of life.
3: How is ME different from depression?
Answered August 2026
ME is a biological, multi‑system condition, not a mental health disorder. While depression affects mood, motivation, and interest, ME affects energy production, autonomic function, immune signalling, and neurological processing.
A key difference is how the body responds to exertion. For many people with depression, exercise can improve mood and wellbeing. For people with ME, exercise or exertion often causes a deterioration in physical health, known as post‑exertional malaise (PEM). This delayed crash (sometimes 12–48 hours later) is a hallmark feature of ME and does not occur in depression.
People with ME usually want to be active, social, and engaged, but are physically prevented by symptoms. In depression, reduced activity is typically due to loss of interest or motivation (anhedonia), not a physiological energy‑production problem.
4: What Causes PEM/PESE?
Answered August 2026
Post‑exertional malaise (PEM) or post‑exertional symptom exacerbation (PESE) is caused by an abnormal physiological response to exertion — whether physical, cognitive, sensory, or emotional. Instead of recovering normally after activity, the body enters a delayed crash that can last days, weeks, or longer.
Research shows that PEM is linked to a “broken energy system” in the body. In ME and Long COVID, the cells struggle to produce and use energy efficiently. This includes problems with the mitochondria, the tiny structures inside cells often described as the powerhouses of the body. When the mitochondria cannot generate energy properly, even small amounts of exertion can overwhelm the system.
Studies also point to abnormalities in:
- energy metabolism — difficulty converting fuel into usable cellular energy
- autonomic regulation — problems with heart rate, blood pressure, and temperature control
- immune signalling — ongoing inflammation or immune activation
- blood flow and oxygen delivery — reduced ability to supply muscles and the brain during exertion
These combined factors mean the body cannot tolerate exertion in the usual way. Instead of building strength or resilience, activity triggers a delayed worsening of symptoms, often 12–48 hours later.
5: How do I explain ME to my Employer?
Answered August 2026
Explain that ME is a long‑term medical condition that affects energy production, thinking, and physical stamina. You may need flexible hours, reduced sensory load, pacing, and predictable workloads to avoid symptom flares. Encourage your employer to visit our dedicated page made especially for them. Also in every issue of ANZMES quarterly supporter magazine: M.E. Time there are useful resources and information for employers.
6: Is ME genetic?
Answered August 2026
ME is not directly inherited, but research suggests a genetic predisposition to immune, autonomic, or metabolic vulnerabilities. It often appears after infection. Find out more in the Risk Factors section of Understanding ME.
7: Is ME lifelong?
Answered August 2026
ME is usually long‑term, but the course varies. Some people stabilise, some improve, and others experience fluctuating symptoms over many years.
8: Is there a dementia risk in ME?
Answered August 2026
Current evidence does not show that ME increases dementia risk. Cognitive symptoms (“brain fog”) come from energy, autonomic, and blood‑flow problems, not neurodegeneration. Find out more in Issue 3 of M.E. Time – the quarterly supporter magazine.
9: What helps most?
Answered August 2026
The most helpful strategies are:
- pacing
- managing sensory load
- supporting sleep
- treating pain and autonomic symptoms
- reducing stressors on the body
- avoiding overexertion
10: What can I do to prevent getting Long COVID?
Answered August 2026
The best way to prevent Long COVID is to avoid COVID‑19 infection and to support your body during recovery if you do become unwell. Long COVID is more likely when the body is pushed too hard during or shortly after infection, especially in people with underlying risk factors.
Reducing the risk of infection: You can lower your chance of developing Long COVID by reducing your chance of catching COVID‑19. Helpful strategies include:
- high‑quality masks in crowded or indoor spaces
- good ventilation and outdoor gatherings where possible
- staying home when unwell and encouraging others to do the same
- testing when symptomatic to avoid spreading infection
- vaccination, which reduces the risk of severe illness and may reduce the likelihood of long‑term complications
These steps reduce the number of infections, and fewer infections mean fewer opportunities for Long COVID to develop.
Reducing the risk after infection: If you do get COVID‑19, the most important protective factor is early rest. Research now shows that the body needs a 4–6 week recovery window after infection to reset immune, autonomic, and metabolic systems.
During this period:
- avoid pushing through symptoms
- rest more than you think you need
- reduce physical, cognitive, and sensory load
- avoid returning to exercise too soon
- pace daily activities to prevent crashes
Early over‑exertion increases the risk of developing Long COVID, especially the ME‑like form characterised by post‑exertional malaise (PEM/PESE).
Why ME and Long COVID differ: Many people with ME were not diagnosed early, meaning they unknowingly continued to over‑exert during the initial phase of illness. This repeated over‑exertion can worsen post‑viral symptoms and increase the likelihood of long‑term disability.
With Long COVID, we now understand the importance of early intervention, which gives people a better chance of recovery and reduces the risk of developing ME‑like long‑term illness.
Key takeaway: Preventing Long COVID is about reducing infection risk and protecting the body during recovery. Resting early, pacing carefully, and avoiding exertion while unwell are the most effective ways to reduce the likelihood of long‑term post‑viral illness.
11: Should I try Low Dose Naltrexone (LDN) for my ME or fibromyalgia?
Answered 18/03/2026
Low-Dose Naltrexone (LDN) has been used safely in low doses “off-label” for fibromyalgia for years with efficacy in pain management. Clinical studies suggest that 50–60% of patients may experience a significant reduction in pain.1 While the drug was originally developed at high doses (50mg) to treat addiction, at “low” doses it acts as an immune modulator and atypical anti-inflammatory that reduces pain and fights inflammation.
More recently it has been used in ME, although research results are mixed with some patients finding it helpful for pain or fatigue, while others report no effect.2 However, according to Griffith University research, laboratory trials have shown that LDN can restore specific cellular functions that are often impaired in ME patients.3
Research highlights several biological mechanisms that make LDN a unique treatment:
- Restoring Cell Function: Griffith University conducted a world-first laboratory study finding that LDN restores the function of TRPM3 ion channels in natural killer cells.3 These channels regulate how calcium moves in and out of every cell, which is a process that is often seriously affected in ME.2
- Rebound Effect: LDN briefly blocks opioid receptors, which triggers a “rebound effect” that causes the body to increase its production of natural endorphins and opioid receptors.3
- Quieting Brain Inflammation: LDN “quietens down” overactive immune cells (microglia) in the brain. This reduces the release of pro-inflammatory cytokines that contribute to the “brain fog” and pain associated with these conditions.1,2
Practical Considerations for New Zealanders
- Prescription & Funding: In New Zealand, naltrexone is a prescription drug that is not funded for these conditions and must be paid for privately.
- Sourcing: Because the standard tablets are too strong, it must usually be made by a specialised compounding pharmacy into the correct low dose.2
- Filling Instructions: Pharmacists should not use “slow-release” forms or calcium carbonate fillers, as these can inhibit the drug’s therapeutic “spike” in the bloodstream.4
- Dosage: The usual starting dose is 1mg daily, which can be increased by 1mg every 5 to 7 days up to a maximum of 4.5mg or 5mg.2
Crucial Safety Note: You must not take LDN if you are using opioid-based painkillers (such as Codeine, Tramadol, or Morphine) as it will block these medications and can trigger immediate, painful withdrawal symptoms.2
Side Effects and Timing:
- Side effects are generally mild but can include insomnia, nausea, or vivid dreams.
- If you experience insomnia, you should take the dose in the morning; if you feel mildly sedated, taking it at night is better.
- Benefits are rarely immediate and can take three weeks to three months of consistent use to notice an effect.1
References:
1 Using low-dose naltrexone for fibromyalgia: Off label but on trend | New Zealand Doctor
2 ANZMES Info Sheet 28.21 Low Dose Naltrexone. Dr Ros Vallings. Retrieved from: https://drive.google.com/file/d/1tQBDo5tsvZeWfv_MDnFOJS03_XUnxRGC/view?usp=sharing
3 World-first laboratory study finds low-dose Naltrexone may improve ME/CFS symptoms – Griffith News
4 LDN Research Trust – The Low Dose Naltrexone Charity
12 Is ME a Functional Neurological Disorder?
Answered 23/12/2025
Functional Neurological Disorder (FND) – is a real condition, but some confuse correlation with causation because ME and FND have overlapping symptoms. This does not mean that ME is caused by FND. They are both complex neurological conditions, but they are distinct and require critically different management approaches. The consequences of mistaking ME for FND are profound and can worsen the condition, leading to significantly lower quality of life and diminished physical and cognitive capacities.
- The Key Difference: FND is understood as an information processing problem within the brain affecting how the brain and body send and receive signals. There are no structural changes to the brain in FND.
ME, however, is a complex, multi-system illness where the mandatory, hallmark symptom is Post-Exertional Malaise (PEM) which is a severe worsening of all symptoms after minimal physical, mental, sensory, or emotional exertion. Studies show notable structural changes in the brains of people with ME/.1 2 3 4 5
Treatment discrepancies: FND patients are advised that although their symptoms are genuine, it is just the brain processing information incorrectly, and to try to ‘ignore’ these symptoms. If people with ME ignore and ‘push’ through their symptoms, they may over-exert and experience PEM. Repeated episodes of PEM can lead to a significant, long-term deterioration in health and a permanent loss of functional capacity.
References:
1 Maksoud, R., du Preez, S., Eaton-Fitch, N., Thapaliya, K., Barnden, L., Cabanas, H., Staines, D., & Marshall-Gradisnik, S. (2020). A systematic review of neurological impairments in myalgic encephalomyelitis/ chronic fatigue syndrome using neuroimaging techniques. PloS one, 15(4), e0232475. https://doi.org/10.1371/journal.pone.0232475
2 Tracking changes in the structure and function of the brain over time in ME/CFS (2024). https://www.meresearch.org.uk/research/barnden-067/
3 Large hippocampus detected in Long COVID and ME/CFS patients (2025). https://news.griffith.edu.au/2025/02/11/large-hippocampus-detected-in-long-covid-and-me-cfs-patients/
4 Lee, J.S., Sato, W., Son, C-G. (2024). Brain-regional characteristics and neuroinflammation in ME/CFS patients from neuroimaging: A systematic review and meta-analysis,Autoimmunity Reviews, 23(2),103484, ISSN 1568-9972, https://doi.org/10.1016/j.autrev.2023.103484.
5 Nelson, T., Zhang, L.X., Gou, H., Nacul, L., Song, X. (2021). Brainstem Abnormalities in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Scoping Review and Evaluation of Magnetic Resonance Imaging Findings. Front. Neurol., Sec. Applied Neuroimaging, 12. https://doi.org/10.3389/fneur.2021.769511
13: I was told that ME is psychosomatic – is this true?
A: Answered in May 2021.
No. This is an outdated and incorrect theory that arose when the biopsychosocial model of health was used to diagnose ME. Because a direct biological root cause for ME could not be ascertained, it was deemed a psychosocial disorder. However more recent research has shown significant physiological manifestations of disease. Other conditions that were originally deemed psychological in nature were MS and Parkinson’s.
Emeritus Professor Warren Tate of the University of Otago states that “Our studies have shown unequivocally this [ME] is not a psychosomatic illness.”
Other research has discovered:
- Mitochondria Function abnormalities
- Altered immune cell metabolism (Youtube video presentation) or article
- Metabolic trap theory (Youtube video presentation) or information
Visit our links page to watch videos from our YouTube channel for more information on current research.
14: Can you recommend a GP in my local area who understands ME/CFS?
Answered in May 2021.
We currently cannot provide a public list. Please refer to your local support group as they may be able to help: https://anzmes.org.nz/what-is-me/support/
15: Is ME classified as a disability or a long-term condition?
Answered: August 2026
In Aotearoa New Zealand, ME is currently classified as a long‑term condition, not a disability. ANZMES continues to advocate for ME to be formally recognised as a disability because it meets the government’s own definition: a long‑term impairment that substantially limits participation in daily life.
What the NZ population‑level data shows
The Bowden et al. (2026) nationwide study using Stats NZ’s Integrated Data Infrastructure (IDI) provides the clearest picture to date of disability‑level impact:
- Only 18% of people with ME were in paid employment — meaning 82% were not working, compared with over 80% employment in the general population.
- Nearly two‑thirds received the Supported Living Payment, indicating long‑term inability to sustain work.
- Almost half had been on a benefit continuously for five years or more.
- Only 1.6% accessed disability support services, compared with 7.2% of other disabled benefit recipients — showing a major mismatch between need and eligibility.
- People with ME had significantly higher health needs, including greater emergency department use and high medication burden (nearly one in three were dispensed 10+ medications in a year).
These findings demonstrate that ME causes substantial functional impairment, severe activity limitation, and long‑term economic hardship — all consistent with disability.
Why classification matters
Classification determines access to essential supports. Under the current system:
- People with ME struggle to access home help, respite, and disability support services.
- Families often become unpaid full‑time carers, losing income while medical costs rise.
- Those with severe or very severe ME (around 25% of the population) may be housebound or bedbound, yet still cannot access the level of support available to other disabled groups.
The social model of disability
ME causes both impairment (neurological, immune, autonomic, and metabolic dysfunction) and disability (barriers to participation, stigma, misclassification, and lack of support). People with ME frequently experience:
- loss of independence and identity
- disconnection from social networks
- financial insecurity
- difficulty accessing appropriate medical care
- stigma from outdated psychosomatic framing
These are disability impacts, not simply “chronic illness” impacts.
Why ANZMES advocates for disability recognition
Formal disability classification would:
- align ME with its actual functional impact
- ensure access to disability support services
- reduce reliance on unpaid whānau carers
- improve equity and consistency across regions
- recognise ME as a serious, disabling, multi‑system condition
ANZMES believes it is time for government to update the classification so people with ME — and their families — can access the support they urgently need.
16 Can I donate blood if I have ME?
August 2026
There is currently a lifetime ban by NZ Blood Service from those with ME donating blood, because of the inconclusive nature of the root causes of ME. Furthermore it is not actually recommended that those with ME donate blood as it will likely impact your energy levels to varying degrees. There is evidence to suggest that those with ME have low blood volume compared to expected levels, and particularly if they also have orthostatic intolerance (van Campen et al., 2018).
van Campen, C. M. C., Rowe, P. C., & Visser, F. C. (2018). Blood volume status in ME/CFS correlates with the presence or absence of orthostatic symptoms: Preliminary results. Frontiers in Pediatrics, 6(352). https://doi.org/10.3389/fped.2018.00352
17: Is it OK for me to have surgery and anaesthesia if I have ME?
Answered in May 2021.
ANZMES does provide an Information Sheet with recommendations from our medical advisor Dr. Ros Vallings, so please contact us to request this (free for members). Alternatively, this google document provides extensive advice from Dr. Charles Lapp. https://docs.google.com/document/d/1MSiO2EInryV3uCrLpUWzGW4HmlLIghsJnDjGQAo3Qaw/edit
18: Should I take low-dose Abilify (Aripiprazole) for my ME?
Answered in May 2021.
We too understand the desperation that can exist in this community, as some have failed to improve by using other means to treat their symptoms. At the same time, the use of this drug for ME is experimental in nature. We encourage everyone to consult with their own doctor, preferably a specialist psychiatrist or psycho-pharmacologist, in order to assess the possible dangers or side effects one might encounter with aripiprazole, even at a low dose. It is also important to consider the possible interactions of any medications one is prescribed.
Dr. Vallings does not intend to prescribe this anti-psychotic for ME patients, because many of the side-effects mimic the symptoms of ME and there is insufficient evidence-based research to suggest it has a positive effect on ME management.
The ME Association UK put out a rapid statement of concern regarding this medication because it poses significant potential risk to health. They state that: “Aripiprazole should be approached with at least as much caution and with as much of a critical eye as we have in the past applied to personal anecdotes and even to research relating to Rituximab for example, or the Lightning Process, and Graded Exercise Therapy.”
Read their statement in full here: https://meassociation.org.uk/2021/05/me-association-statement-aripiprazole-abilify-me-cfs/
The use of any possible medication needs to be a conversation between you and the doctor who prescribes your medication. One size does not fit all.
19: Is the Lightning Process going to cure my ME?
Answered in August 2026.
There is no scientific evidence that this psychological approach can cure ME. No high‑quality clinical trials have shown benefit for people with ME, and international experts do not recommend it as a treatment.
ANZMES follows international best practice for ME management, including the NICE 2021 guideline and other global standards listed on our Position Statements page.
The most effective and safest approach to managing ME focuses on pacing, energy conservation, sensory‑load management, and avoiding post‑exertional malaise (PEM/PESE). You can read a clear, patient‑friendly overview of ME management from Dr Ros Vallings here: http://www.drvallings.co.nz/management.html
20: Should I try CBT/GET for my ME or Long COVID?
Answered August 2026
Cognitive Behavioural Therapy (CBT) can be helpful for people living with ME or Long COVID when used to support the emotional and psychological impact of chronic illness: such as stress, anxiety, adjustment, or low mood. CBT does not treat or cure ME or LC, but some people find it useful for coping, pacing, and managing the challenges of long‑term symptoms.
Graded Exercise Therapy (GET) is not recommended for ME or Long COVID. International guidelines, including NICE (2021), advise against GET because it can trigger post‑exertional malaise (PEM/PESE) and lead to deterioration. People with ME and Long COVID with ME-like features have a broken energy system, meaning exertion does not build strength; instead, it can worsen symptoms.
If you are considering any therapy, it is important to work with a clinician who understands ME and LC, recognises PEM/PESE, and supports symptom‑contingent pacing rather than pushing through activity.