MECFS

A Guide to Navigating Research

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Discerning Robust vs. Flawed Science

In today’s age, we’re constantly bombarded with persuasive headlines promoting a flood of health claims, miracle cures, and the latest research. For patients and healthcare professionals alike, it can be challenging to distinguish between robust, meaningful science, and flawed studies, or even information, that can be misleading or even harmful.

A pivotal moment that reshaped the understanding and treatment of ME/CFS to this day, was when two psychiatrists published an influential opinion piece in 1970. This piece centred on the 1955 Royal Free Hospital outbreak, which had initially been classified as a viral epidemic. The psychiatrists, noting that the illness disproportionately affected female nurses rather than male doctors, argued that the outbreak was not a viral event but rather a case of “mass hysteria.” Crucially, a very tactical, tiny footnote was overlooked and revealed that they had no evidence to back this claim. Despite this, their unsubstantiated opinion initiated a psychological narrative for ME/CFS, fundamentally altering its course. This marked a significant and detrimental shift from the World Health Organisation’s previous classification of ME as a neurological disease, paving the way for flawed theories like “deconditioning” and “illness behavior.” The impact of this single piece of writing, which was NOT even research, was profound, setting the stage for years of misunderstanding and inadequate care for the ME/CFS community. 

These theories led to designated treatments like Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET), which have since been shown to cause harm to many patients, as evidenced in the recent report Treat ME (July 2025) by the Open Medicine Foundation of responses from 4000 ME/CFS patients1.

This article, written by ANZMES, the leading National Advisory on ME/CFS, offers the guidance and tools you need to critically evaluate health information, empowering you to make informed decisions based on evidence, NOT headlines.

1 TREATME: the Open Medicine Foundation’s Mammoth ME/CFS and Long COVID Treatment Survey Results – Health Rising

🔑Understanding the Language of Research

Before we can analyse a study, we need to understand the basic principles that underpin quality research. These terms are crucial for gauging the trustworthiness of a study’s findings.

Key Terms:

  • Validity: This refers to the accuracy of a study’s findings. Does it actually measure what it claims to be measuring? For example, a study claiming a therapy, treatment, or drug improves “quality of life” must use methods that genuinely capture that complex concept, rather than just measuring something simpler, like the ability to walk a certain distance. A study that lacks validity produces misleading results. 
  • Reliability: This is about consistency. If the same study were repeated, would it produce similar results? A reliable study uses methods that are consistent and repeatable, ensuring the findings are not just a one-off fluke.
  • Generalisability: This is the extent to which the findings of a study can be applied to a wider population. For example, a study on long COVID only includes participants under 30, its findings may not be generalisable to the entire long COVID population, which includes all ages. A critical factor for generalisability is the Central Limit Theorem (CLT). As a general rule in statistics, a sample size of more than 30 is often considered sufficient to assume that the sampling distribution is approximately normal, allowing for the generalisation of findings to the broader population. Conversely, sample sizes smaller than 30 are typically not considered robustly generalisable based on this principle.
  • Replication: The act of re-conducting an entire study, often by different researchers, to see if the original findings can be reproduced. Although single studies can seem promising, replication is pivotal to strengthen the hypothesis. If a study can’t be replicated when the same methodology is used, it may indicate that the original study was flawed in some way.  However, when results from studies using different scientific methods support each other, this strengthens the evidence base, increasing validity, generalisability and the potential for funding. 
  • A Bonferroni correction is a way of making the test for significance much stricter to account for the large number of tests being performed. If you run hundreds of statistical tests, your chance of getting a “significant” result by a random fluke is very high. This correction raises the bar for what counts as a discovery, helping to ensure that a finding is truly meaningful and not just a random statistical blip. Studies that test many hypotheses without these corrections may report false positives. 

❓Questions to Ask of Any Study

Critical analysis isn’t about simply criticising; it’s about conducting a deep, systematic evaluation. Use this checklist to scrutinise the research you encounter.

1. Scrutinise the Source and Motive

Every study is influenced by a reason and a source of funding. It’s crucial to determine any potential motives and biases.

  • Who conducted the study and who funded it? Look at the authors’ qualifications and professional affiliations. Are they recognised experts in the field? More importantly, was the study funded by an organisation that stands to profit from a particular outcome? It’s important to distinguish the type of funder. Unlike commercial entities that may profit from a certain finding, patient advocacy organisations (like ANZMES) fund research with the primary motive of patient welfare, not profit. Most importantly, these grants mandate researcher independence, meaning the funder has no influence over the study’s results or publication. Whereas, some individuals may publish studies on a technique that they have commercial interest in – creating not only a conflict of interest, but raising questions about their motives and therefore the conclusions drawn in the study.
  • What was the underlying reason for the research? Is the study attempting to answer a genuine scientific question, or could its primary purpose be to generate income, lobby for a specific viewpoint, or persuade a group towards a certain belief system? We need to determine the motive and bias that may be present in the research undertaken. It is concerning when flawed studies are shared amongst healthcare circles via their platforms which can mislead professionals into recommending a therapy to patients without knowing the full risks.

2. Examine the Methodology

The quality of a study is fundamentally tied to how it was conducted. Some research may not benefit from a rigid, “one-size-fits-all” process. A truly evidence-based approach relies on a collective set of scientific principles, not just a “box-ticking” exercise. This requires flexibility and creativity, especially when the patient and their unique experience are central to the research. 

  • How was the data collected? Was it through objective, science-based measurements, or subjective methods like self-completed questionnaires and interviews? In complex conditions like ME/CFS, self-reported data is essential to capture the lived experience of core symptoms like pain, fatigue, and cognitive dysfunction. However, robust research strengthens this subjective data by using validated and standardised questionnaires, like the SF-36 (a 36-question health survey that doctors and researchers use to get a snapshot of your overall well-being and quality of life) or the more specific ME/CFS Fatigue Types Questionnaire. These tools are specifically designed to be reliable and consistent, and a high-quality study will often cross-reference patient reports with objective markers where possible to ensure the findings are valid.

For understanding complex conditions like ME/CFS, a precision medicine approach is essential, as it moves beyond a one-size-fits-all model. The “deep dive” approach, exemplified by cases like the JenX recovery story after 18 years of severe ME/CFS, offers invaluable insights by focusing intensely on an individual’s condition, history, and experiences2. These “deep-dive” studies on small, carefully selected patient groups can reveal significant findings in specific subgroups that might be overlooked in large-scale research. By focusing on individual patient nuances rather than broad generalisations, this method allows for a more personal and profound understanding of the illness’s complexities, which is often lost when dealing with large, one-dimensional datasets, often seen in fields like cancer studies.

  • Who were the participants? How large was the sample size? Were they selected in a way that represents a good cross-section of the group being studied? It is important to distinguish this from some vital ME/CFS research that intentionally uses a small sample size for a highly-individualised ‘deep dive’. Given the complexity of ME/CFS, these studies are often necessary to explore specific mechanisms, like unique biomarker profiles etc. The key feature of high-quality research in this area is that the authors will explicitly state the study’s limitations eg. weaknesses, constraints, or boundaries of a study. For example, the findings may only apply to a specific patient subtype—and will not generalise them to the entire ME/CFS population. The danger arises when these detailed but narrow findings are overstated or used to promote a universal treatment or cause.
  • Was the response rate sufficient? It is vital to know how many people started a study versus how many completed it. If a study begins with 20 participants but only reports on the 12 who finished, it has a 40% drop-out rate. This is a significant flaw that can create a falsely positive picture.
  • Was there a control group? Without a control group for comparison, it’s impossible to know if an intervention caused the outcome or if participants would have improved anyway. For example, if noted a participants’ illness duration was less than a year, it’s possible these participants could have already been on a recovery pathway. It’s also important to include a group of participants with a longer duration of illness otherwise this weakens any causal conclusions.

2 From Severe ME/CFS to Healed: Jen’s Remarkable Rinvoq ME/CFS Recovery Story – Health Rising

3. Evaluate the Data and Conclusions

The final step is to check if the claims stand up to scrutiny.

  • Does the data back up the claims? Read past the headline and abstract. Do the results presented in the study actually support the strong conclusions being made, or are the findings overstated? To do this, look for a few key statistical concepts:

Understanding the p-value and Statistical Significance: 

  • One of the trickiest but most important numbers in a research paper is the p-value. It refers to the significance of the results, representing the probability or the confidence we can have in the hypotheses. Its job is to help us decide if a finding is a genuine effect or just a random fluke. 
  • The easiest way to understand it is to think of a courtroom trial. For example, in a trial, the starting assumption is that the defendant is “innocent until proven guilty.” In research, the starting assumption is called the null hypothesis—it assumes the treatment or intervention has no effect. The prosecutor then presents evidence to challenge the defendant’s innocence. The p-value is like a statistical summary of that evidence. 
  • A small p-value means the evidence is very surprising and unlikely to have occurred by chance. In science, a p-value greater than 0.05 means we accept the null hypothesis (no effect) and below 0.05 means we can reject the null hypothesis. Because this is so unlikely, researchers reject the “no effect” assumption and declare the finding statistically significant.
  • Statistical significance helps assess whether the results of a study are likely genuine rather than caused by random chance. When a result is deemed statistically significant, it suggests there’s a high probability that the observed effect is due to the treatment. Researchers usually establish a significance threshold in advance—commonly a p-value of 0.05—to determine the level of evidence required to consider the result valid.
  • Was the research peer-reviewed? Reputable scientific research is published in journals that use a peer-review process. This means independent experts in the subject area have evaluated the study for quality and validity before it was published, acting as a critical filter.

However, the peer-review process is not infallible and can be subject to human error or reviewer bias. Therefore, even after a study is published in a reputable journal, it is wise to be discerning. Look for post-publication commentary, such as “rapid responses” in the ‘Responses’ tab of the article where other experts and groups may critique or strongly argue the study’s methods, findings, or conclusions. 

  • Have they referenced other reputable sources? Good research acknowledges the existing body of knowledge. Be wary of studies that ignore or dismiss contradictory evidence, especially major clinical guidelines from bodies like the National Institute for Health and Care Excellence (NICE), Mayo Clinical Proceedings, and Centre for Disease Control and Prevention (CDC). For example, some researchers may dismiss established guidelines in favour of a single “high-quality” trial. What these researchers may not mention is that such a trial was later found to have many inaccuracies, prompting a correction and clarification. Some ME/CFS ‘treatments’ like Graded Exercise Therapy (GET) have a controversial background, with major clinical guidelines specifically advising against them in response to poor research quality and ethical concerns.

Why is Replication So Important?

Often in ME/CFS research, we see new studies draw the same, or similar, conclusions to those that have been published previously. Replication is crucial for several key reasons below, contributing to the overall integrity and progression of scientific knowledge3.

  • Accumulation of knowledge: The results from one study alone are usually not enough to draw firm conclusions about an association. Researchers must gather evidence from several studies leading to the accumulation of knowledge over time to build an evidence base. Think of it like building a structure brick by brick – each study is a brick, and replication ensures the mortar is strong enough to support the entire wall of knowledge.
  • Replication using different methods: When results from studies using different scientific methods support each other, this strengthens the evidence for a particular association. This demonstrates that the finding isn’t an artifact of a specific method but a robust, verifiable observation.
  • Increased trustworthiness: As evidence grows in support of a particular hypothesis,  especially when the evidence is from different research groups, using different methods and different study populations, the more other researchers, health professionals, and the public come to trust the conclusions drawn.  

The more high-quality research there is suggesting that a particular system is involved in ME/CFS disease mechanisms (eg. immune system) the more likely it is that large funding bodies will invest in research into potential treatments in that area of the disease. A recent example of this is a study by a team of researchers at Cornell University which concluded that “immune dysregulation underlies ME/CFS pathology.” While this conclusion is not ‘new’ knowledge in itself as ME/CFS has been linked with the immune system for years, findings add to the evidence base which supports involvement of the immune system in ME/CFS disease mechanisms. 

It is also important to note, however, when evaluating research, it is crucial to recognise that replication doesn’t always guarantee validity. Sometimes, a flawed study protocol is meticulously followed by other researchers, leading to the repetition of a distorted or inaccurate conclusion. A key example is earlier research on long COVID, where poorly defined patient cohorts resulted in flawed findings that were then replicated in subsequent studies.

 3 www.meresearch.org.uk/why-replication-of-research-findings-is-important/

Ethics, Bias, and Integrity: Why Ethical Approval Matters

Rigorous research involving humans must undergo an ethical review. This process is designed to:

  • Protect Participants: It ensures that participants are not exposed to undue risk or harm and have given fully informed consent.
  • Ensure Scientific Integrity: It scrutinises the study design for scientific validity and rigour.
  • Limits Bias: It helps to ensure the research is conducted objectively.

Labelling a study as an “audit” can sometimes be a way to bypass this essential ethical oversight, allowing unreliable or lower-quality research to be published. For example, if 12 participants were surveyed but 20 were in the group, this means there was a 40% dropout rate. Ignoring the reasons behind dropout rates, ignores vital information that may show that the technique was not as promising as the audit may lead readers to believe. Missing 40% of the group is significant, diminishing any causal conclusions, especially if not all experiences were reported. 

Bias in Research

It is crucial that medical education relies on the latest research and adheres to the principles of evidence-based research, without personal bias or conflicts of interest. Bias can distort research findings, leading to incorrect conclusions. Here are common types to watch for:

  • Responder Bias (or Volunteer Bias): It’s important to consider those who volunteer for the study may be different from those who don’t. Responder bias is the tendency for people in a study to provide inaccurate answers, often unconsciously. This can happen for various reasons, such as trying to give the answers they think the researcher wants. As a result, this bias can distort the data, making the study’s conclusions an unreliable reflection of people’s true thoughts or behaviours. 
  • Selection Bias: This occurs when the participants are not chosen randomly. For example, a researcher might consciously or unconsciously select participants they believe will respond well to the treatment, creating a biased sample.
  • Confirmation Bias: This is the tendency for researchers to favour, interpret, and recall information that confirms their pre-existing beliefs or hypotheses. Naturally, we can seek and interpret information that confirms existing beliefs and ignore contrary evidence for example, only following news sources you agree with. This tendency can lead to researchers downplaying negative results or over-emphasising positive ones. When researchers, or those promoting specific interventions, only cite evidence that supports their existing viewpoint and disregard contradictory findings, it exemplifies confirmation bias in action, hindering a truly objective assessment of the evidence.  A good researcher should actively seek opposing viewpoints, and assign a ‘devil’s advocate’ before any decisions.
    • Another example, some studies have been criticised for ‘outcome swapping’ where the primary measure for success was changed partway through, for example from an objective measure like school or work attendance to a subjective self-report questionnaire. If a treatment/therapy overtly encourages participants to only report positive outcomes, this is likely to lead to confirmation bias. 
  • Multiple Testing Bias: In complex illnesses like ME/CFS and long COVID, researchers often test hundreds or thousands of different variables (e.g., biomarkers) at once. When so many tests are performed, it becomes statistically likely that some will appear “significant” purely by chance. To counteract this, researchers must use statistical corrections – for example, a Bonferroni correction (see key terms), to adjust their p-values.

Putting It All Together

🚩What Flawed Science Looks Like

Flawed science often shares common characteristics. Be sceptical when you see studies that:

  • Avoid ethical review by labelling themselves as an “audit.”
  • Have a high, unexplained drop-out rate.
  • Lack a control group, making it impossible to determine cause and effect.
  • Use small, non-representative samples but make broad generalisations.
  • Report “significant” findings from testing many variables without correcting for multiple comparisons.
  • Rely on vague or self-reported data without objective measurement.
  • Ignore or dismiss major clinical guidelines and high-quality contradictory evidence.

An audit based on a flawed study can be seriously misleading to healthcare clinicians. Patients with complex chronic illnesses deserve evidence-based healthcare, and professional bodies have a duty to safeguard people from the biased promotion of interventions or treatment approaches that are unproven and do not have a scientific basis. It is the responsibility of researchers to conduct high-quality, ethical studies and the duty of healthcare professionals to critically appraise the evidence before recommending treatments. A medication would be held to much more stringent safety standards. We must demand the same for all interventions.

👍What Good Research Looks Like

In contrast, high-quality science is built on a foundation of rigour, transparency, and respect for evidence. Good research, particularly in ME/CFS, typically:

  • Is Ethical and Transparent: It undergoes a formal ethical review, is transparent about its funding sources, and clearly reports and explains participant drop-out rates.
  • Uses Precise Definitions: This is especially critical in ME/CFS research. Good science uses specific diagnostic criteria that require the hallmark symptom of Post-Exertional Malaise (PEM) to ensure they are studying a consistent patient group. This stands in contrast to the historical use of flawed criteria like the 1994 Fukuda definition, which did not require PEM and allowed for the inclusion of patients with different forms of chronic fatigue. This methodological flaw fueled the conflict between the biomedical and psychosocial models of the illness; by creating mixed study groups where biological signals were diluted, it created an opening for psychological theories to take hold. The correct criteria for ME/CFS Research should be in accordance with Canadian Consensus Criteria (CCC).

*If recruiting through medical clinics, Institute of Medicine (IOM) Criteria 2015 or International Consensus Criteria (ICC)  is used by clinicians for diagnosis. 

  • Is Methodologically Robust and Acknowledges Limits: It employs appropriate control groups, uses sample sizes large enough to produce statistically meaningful results, or studies individual patients in depth according to the principles of Precision medicine, and applies necessary statistical corrections when testing multiple variables. When navigating the body of ME/CFS research, you will often see studies with small sample sizes due to being highly individualised. Good science acknowledges these limitations explicitly and avoids making broad generalisations about findings beyond what the data support, particularly in smaller or exploratory studies like some ME/CFS research.

It’s important to consider, specifically for ME/CFS research, a strong argument can be made that while large cohort studies are valuable, they should not overshadow the profound insights gained from longitudinal studies on individual patients or small, carefully selected groups. These studies are crucial for uncovering significant, reproducible changes and can yield consistent conclusions when different technologies are applied, providing a deeper understanding of the illness.

  • Integrates Objective Data:  While valuing patient-reported symptoms, strong research seeks to validate these experiences with objective, measurable biological data whenever possible. Given the importance of patient experience, you will see a heavy reliance on self-reported data in ME/CFS research. Good science strengthens this by using validated and standardised questionnaires to ensure the data is reliable and consistent.
  • Avoids Confirmation Bias: Good research actively seeks out and considers all relevant evidence, including findings that may contradict initial hypotheses, rather than selectively citing only supporting information.

Summary

Some research can fail to meet scientific standards, misrepresent a therapy’s risks, and reinforce all the criticisms of previous weak studies. While non-harmful elements of a programme may deserve a place in treatment (and are often already widely available, in free or low-cost formats) and some participants do improve (although it’s unclear if they recover), the overall approach must be scrutinised. By asking the right questions and demanding robust evidence, we can all contribute to a healthcare landscape built on a foundation of ethical and trustworthy science.

🧰Your Critical Thinking Toolkit

As a take-home, exercise your critical thinking skills by asking these questions next time you read or discuss new information:

  • Who stands to benefit from this information? Who is most directly affected, and who would be the best person to consult for an alternative perspective?
  • What are the strengths and weaknesses of the study’s claims? Is there a counter-argument to the conclusions presented?
  • Where would we see this in the real world? Are there similar concepts or situations that either support or contradict these findings?
  • When is this information acceptable or unacceptable? What is the best time to take action based on this research?
  • Why is this relevant to you, and what is the underlying challenge or problem this research aims to address? Is there a need for this information today?
  • How is this similar to or different from other information you’ve encountered? How does this information affect you or others, and how can you approach it safely?

The core message is this: shared decision-making is not just a best practice, it is a critical component of effective and ethical care, particularly for patients with complex, chronic conditions like ME/CFS. Patients who are well-informed and actively involved in their treatment have better outcomes and are more likely to adhere to their management plan. This is especially true for those with ME/CFS, a condition that has been historically misunderstood. By empowering patients (and their carers, when the illness is severe) with robust, evidence-based information, you are enabling them to become partners in their care. This collaborative approach, where the patient retains personal control over their health decisions, is essential for building trust and ensuring the management plan respects their unique needs and lived experience.

Press Release: Prescription & Dispensing Rule Changes | Medicines Control Group

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Date – 2nd October 2025

The Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) has lodged a formal submission with Medicines Control, calling for an urgent review of medication dispensing regulations that are causing significant harm to New Zealanders with chronic illnesses. This action follows a complaint from a community member to one of our ME/CFS organisations that was escalated to Medicines Control by the Health and Disability Commissioner’s office. As the National Advisory it is ANZMES’s responsibility to highlight the public interest in the issue.


The submission, written on behalf of the ME/CFS, Long COVID, and wider chronic illness communities, details how the current “one-size-fits-all” system creates severe financial, logistical, and health burdens for the country’s most vulnerable patients. It highlights the direct clash between rigid, frequent dispensing requirements and the medical realities of living with energy-limiting conditions that leave many housebound and/or bedbound. The member who submitted the original complaint to the Health and Disability Commissioner stated “I am disabled and cannot always drive. Not all of us can simply jump in a car to collect our medication.” This emphasises the lived experience of many with ME/CFS and other chronic conditions.


Under current regulations, many controlled drugs essential for managing complex symptoms have a maximum one-month prescription length, with dispensing often fragmented further into weekly lots. This forces patients who were previously stable on three-month prescriptions to now secure a new script every 30 days, tripling their costs and putting their health at serious risk for pharmacy trips.


The submission includes powerful patient testimonies, with one member stating they were refused essential medication one day early, leaving them without it for three days. Many patients, especially those with mobility issues, rely on caregivers or support workers to pick up essential medication who are not available for weekly or monthly pick-ups.


ANZMES is calling for a review of dispensing frequency and prescription length, fees and a patient-centred system that allows for flexible dispensing and clear exceptions for those in severe categories.


“This is not a request for special treatment – we are urging for equitable access to essential healthcare for some of New Zealand’s most vulnerable citizens” states Fiona Charlton, AZNMES President. “We have officially put this case to Medicines Control and await a response that prioritises the well-being of all New Zealanders.”

Press release – ANZMES Submission: draft New Zealand Disability Strategy | Whaikaha

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26th September 2025 – For immediate release

In a formal submission to Whaikaha (Ministry of Disabled People), the Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) has responded to the draft New Zealand Disability Strategy 2026-2030 as part of the open public consultation, closing 28th September. ANZMES warns the strategy will fail tens of thousands of New Zealanders unless the government addresses fundamental systemic barriers and provides essential support for people with ME/CFS.

Despite meeting the government’s own definition of disability, ME/CFS is classified as a “chronic illness,” rendering patients ineligible for Disability Support Services (DSS). This exclusion also impacts the growing number of New Zealanders with Long COVID, as studies show up to 50% of them meet the diagnostic criteria for ME/CFS.

“This strategy’s aspirations for accessibility and equity are just words on a page for our community. We are dealing with a broken, top-down funding model that creates impossible barriers and leaves people to fend for themselves until their health deteriorates completely.” says ANZMES President, Fiona Charlton. 

The submission argues that the core problem is a government funding model based on a predetermined budget rather than a true assessment of need. This forces Whaikaha to create narrow eligibility criteria that exclude conditions like ME/CFS, a situation compounded by the lack of data collection that makes these conditions invisible to policymakers.

“The current approach is an ‘ambulance at the bottom of the cliff’,” Fiona Charlton added. “Providing moderate support early can prevent people from declining to more severe levels, which is more compassionate and more fiscally prudent. The government cannot claim to have an equitable strategy while ignoring a significant portion of the disabled community.”

To create a truly inclusive and effective strategy, ANZMES urges Whaikaha to take a cross-cutting approach that addresses the specific needs of people with ME/CFS. The first and most critical step is to formally classify ME/CFS as a disability, which will ensure equitable access to essential services such as home help, mobility aids, and financial assistance. This must be supported by the implementation of comprehensive data collection and systematic coding for ME/CFS and Long COVID across health and social systems to inform a new, needs-based budget. Furthermore, the government must eliminate the current “postcode lottery” of care by committing to an urgent nationwide rollout of the Enabling Good Lives model. Support must also extend to investing in flexible employment, mandating disability competence training for key workforces, and developing specialised housing solutions with long-term residential care for the most severely affected individuals.

ANZMES is calling for a fundamental shift from an arbitrary budget to a system that identifies the true scale of need and funds it accordingly.

ANZMES Statement on Sharing Improvement and Recovery Stories

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8th September 2025 – Clarification Regarding the ANZMES Statement Released on 20 August 2025

We want to acknowledge the concerns raised in response to our recent statement. It was never our intention to cause confusion or distress, and it is regretful that some members of the community interpreted the statement as an endorsement of specific techniques or providers, including the Lightning Process or therapies based on it. We want to be clear: ANZMES does not endorse the Lightning Process, any therapies based on it, or any non-evidence-based intervention.

All members of the ANZMES Executive Committee are directly impacted by ME/CFS—either personally, through loved ones, or professionally. We care deeply about the ME/CFS and Long COVID communities. We walk alongside you in these challenges, and our advocacy is rooted in lived experience, compassion, and a commitment to scientific integrity.

As the National Advisory on ME/CFS, ANZMES remains committed to:

  • Upholding international best practices, including the NICE 2021 guidelines
  • Providing evidence-based education and resources
  • Supporting all members of our community, regardless of the paths they’ve explored

Why the Statement Was Made

The original statement was created in response to reports that a provider and some community members had received defamatory, abusive, and threatening messages. This behaviour is unacceptable and could lead to the sender facing police or legal action. We want to reiterate:

  1. ANZMES does not condone abuse, threats, or harassment—towards anyone, inside or outside the ME/CFS and Long COVID communities 
  2. Mentioning a provider does not imply endorsement or alignment.
  3. We do not endorse the Lightning Process, any therapies based on it, nor any technique that lacks a robust evidence base.
  4. We support the sharing of all experiences—including recovery, improvement, harm, and decline—as part of a balanced and inclusive narrative.
  5. We are committed to supporting all members of our community, regardless of the techniques they’ve tried or the outcomes they’ve experienced.
  6. We remain committed to correcting past misinformation and protecting the reputation of our communities as reputable sources of our own experience, research, and knowledge.

Our Position on Improvement or Recovery Stories

We recognise that commonly agreed upon international statistics, report a small percentage of people (~5%) show genuine improvement or recovery but from no single identifiable intervention. 

However, these stories (alongside accounts of worsening or decline, or no change) when shared respectfully and transparently, can provide a balanced perspective that may contribute to a broader understanding of ME/CFS and Long COVID. However, ANZMES is not making recommendations in favour of any specific treatment, technique, or provider.

We encourage individuals to:

  • Do their own research
  • Consult ME-aware health professionals
  • Make informed decisions based on international best practice

We will continue to share robust evidence-based up-to-date information on best practice guidelines and support all members of our community—regardless of the choices they make or the outcomes they experience. 

21st August 2025 – Statement:

ANZMES supports our members and community in sharing both their stories of improvement and recovery or the harmful effects, regardless of the type of treatment or approach that has helped or not helped them. We believe people should be able to share these experiences openly and without fear of retaliation or rejection.

As an organisation ANZMES recognises and follows the NICE October 2021 guidelines and does not rely on any methods that are not evidence-based. Whilst we do not make broad recommendations, we do however, respect the right of our members and community to seek out their own treatments and to share their personal stories.

We welcome hearing about improvement and recovery experiences. We do not support and we condemn any bullying, negative commentary, doxxing, spamming, or abuse directed towards individuals who choose to pursue these techniques, or towards the providers offering them.

We ask that respect be extended to those who have experienced recovery. Their journey is personal and valid, and their story deserves to be heard without judgment. At the same time, we encourage individuals sharing recovery experiences to do so with sensitivity, acknowledging that ME/CFS affects people in diverse and complex ways.

Choosing not to pursue a particular treatment or approach does not reflect a lack of desire to recover—it simply represents a personal decision based on individual circumstances, health status, lived experience, and the valuing of evidence-based methods and international standards. 

We strongly reject gaslighting or dismissive comments such as “they must not have been sick” or “they must not have had ME/CFS” in response to someone’s recovery. These statements are harmful and ignore the heterogeneity of the condition. It is important to remember that ME/CFS includes multiple subgroups, and while a small percentage of individuals may recover to near pre-illness levels, many more do not, despite trying numerous interventions. We celebrate improvements where they occur, while holding space for those whose journey continues with ongoing challenges.

We also welcome feedback and experiences where the outcomes of any techniques or treatments produce a worsening of functional capacity. This is to ensure a scientific approach, where all experiences, regardless of outcome, are received, to produce a well-rounded understanding of subjective outcomes.

ANZMES also wishes to clarify that, in the past, we published that Mel Abbott is a Lightning Process practitioner. This is no longer the case. The Switch, run by Mel Abbott, through her private business: Empower Therapies, is not affiliated with the Lightning Process, according to Mel Abbott. While the provider considers The Switch to be distinct, ANZMES maintains its position: we do not recommend any technique that is not evidence-based, and we adhere strictly to the NICE 2021 guidelines.

By sharing this statement, we aim to protect our community’s right to speak openly about their personal journeys, uphold respect across all discussions, and ensure that misinformation is corrected.

ANZMES is NOT endorsing any technique or treatment, but rather, is making it clear that we do not condone bullying, harassment, or threats.

ANZMES Executive Committee.

Press Release – ANZMES Urges Rejection of the Regulatory Standards Bill: “A Threat to Public Health and Equity”

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Release Date: 23rd June 2025

The Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) has lodged a formal submission opposing the Regulatory Standards Bill currently before the Finance and Expenditure Committee, warning that the legislation poses serious threats to public health, equity, and democratic governance.

While framed as a mechanism for improving legislation, ANZMES argues that the Bill prioritises corporate interests and economic efficiency at the expense of community wellbeing, Māori rights under Te Tiriti o Waitangi, and the government’s ability to protect its citizens.

“This Bill would codify neglect, lock in inequities, and diminish the government’s ability to act in the public interest,” said ANZMES President, Fiona Charlton.

Key concerns raised by ANZMES include:

  • Erosion of Public Health Protections: The Bill’s failure to include a public harm principle and its introduction of ‘takings’ provisions could deter life-saving regulations such as tobacco control, healthy housing, and pandemic preparedness.
  • Undermining Te Tiriti o Waitangi: The Bill promotes a narrow and universalist interpretation of “equality before the law” that disregards the Crown’s obligations to Māori. This risks dismantling targeted programmes essential for reducing health inequities.
  • Impact on the ME/CFS Community: With over 65,000 New Zealanders living with ME/CFS, ANZMES highlights how the Bill’s rigid economic framing would entrench the existing exclusion from disability supports, reduce funding for biomedical research, and block future policy progress.
  • Increased Bureaucratic Burden: For individuals with chronic illnesses like ME/CFS—many of whom experience cognitive and physical crashes following exertion—the Bill’s additional regulatory requirements would impose impossible barriers to engagement and justice.
  • Post-Viral Illness and Long COVID: With ME/CFS often triggered by viral infections, the Bill’s chilling effect on public health interventions could fuel a rise in disabling post-viral conditions and increase long-term health costs to the nation.

ANZMES calls for the complete rejection of the Regulatory Standards Bill, asserting that New Zealand needs compassionate, evidence-based regulation—not a framework that puts profits over people.

“This Bill won’t fix the system—it will freeze it in dysfunction,” said Charlton. “We need legislation that protects and uplifts our most vulnerable, not policies that entrench neglect.”

Ends.

For media inquiries, please contact, Angela Cayford:  

info@anzmes.org.nz | 03 471 6203

ANZMES Announces Third Year of Grant and Scholarship Programme to Propel ME/CFS and Long COVID Research in 2025

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Photo Credit: Pixabay/user_id:143740 – jarmoluk-laboratory-2815641_1280.

FOR IMMEDIATE RELEASE

ANZMES, Aotearoa’s National Advisory on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), is proud to announce the launch of its 2025 Grant and Scholarship Programme for postgraduate students and academic researchers. The programme is aimed at supporting students who are interested in researching ME/CFS and long COVID. Marking the third consecutive year of this vital initiative, the programme continues its dedicated support for groundbreaking research into ME/CFS and the overlapping challenges of Long COVID within New Zealand.  

ME/CFS is a debilitating chronic condition involving overwhelming ongoing fatigue. Although millions of people suffer with the illness worldwide there is remarkably little research or funding available. 

ANZMES urges postgraduate students and academic researchers across Aotearoa to consider applying for the 2025 Grant and Scholarship Programme.

Fiona Charlton, ANZMES President, states, “As we enter the third year of our Programme, we are incredibly encouraged by the calibre of research from our previous recipients. The funding we are offering can provide crucial support for innovative projects, helping to pay for fees, study, living, or laboratory expenses, and ultimately improving the lives of those affected by these conditions.”

The 2024 recipients included:

  • Associate Professor Mona Jeffreys and Kahurangi Dey from Victoria University of Wellington, who were awarded a $25,000 grant for their project, “Exploring the Prevalence and Determinants of Food Insecurity in People with ME/CFS and/or Long COVID.” Their work also aims to contribute to an ME/CFS Registry in New Zealand.  
  • Melissa Blanc from Auckland University of Technology, received a $5,000 scholarship for her systematic review titled, “Exercise in ME/CFS Patients: Helpful or Harmful?” This research addresses the ongoing debate surrounding exercise recommendations for ME/CFS patients.  
  • Beth Hobbs from Victoria University of Wellington, was awarded a $5,000 scholarship for her project, “Psychological Support for ME/CFS Patients in Canterbury,” focusing on improving patient outcomes, particularly for those who are housebound.  

The impact of this programme extends beyond a single funding cycle. Illustrating the progression of research fostered by ANZMES, Dr. Nicholas Bowden of the University of Otago, a 2023 grant recipient, has recently had his significant study on the experiences of individuals with ME/CFS in New Zealand submitted for peer review to BMC Public Health. This demonstrates the tangible contributions ANZMES-funded research is making to the broader scientific discourse. Read more here: Study provides data on life with ME | Otago Daily Times Online News

For the 2025 funding round, ANZMES is pleased to offer substantial support for researchers dedicated to advancing our understanding of ME/CFS and its intersection with Long COVID. The programme includes:  

Two grants are being offered for postgraduate studies or academic research in either the Faculty of Science, Faculty of Medical and Health Sciences, Faculty of Public Health, or Faculty of Sport and Exercise Science to contribute towards the costs of laboratory analysis or for a research project on ME/CFS or ME/CFS and long COVID. Up to $25,000 per Grant may be awarded.

Four scholarship awards (up to a value of $5,000 each) will be offered to students to contribute towards the expenses of studying for a postgraduate degree in the Faculty of Health Sciences, Public Health or Humanities/Social Sciences for a student who can demonstrate financial project cost requirements or study expenses and who are conducting study/research on ME/CFS or ME/CFS and Long COVID.

Our funding programme is made possible by the support of our members.

Applicants will be selected by ANZMES on the recommendation of their Scholarships Committee.

Applications for 2025 opened 31 May and close on 31 July 2025.

Further information and application forms are available at:

For Researchers

Spotlight on ME/CFS for World ME Day

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May 12, marks World ME Day – a day to shine a light on this debilitating complex chronic illness.

Watch this powerful new story by Zoe Madden Smith and read about Tammy and Glenys Rumsey’s story here: https://www.1news.co.nz/2025/05/12/mysterious-fatigue-illness-traps-people-in-their-bodies/

Watch here (16 minutes): https://www.tvnz.co.nz/news/news-in-depth-str-2wk511qgg0gjdnqqimytlj6ohfa-1746983905003/me-chronic-fatigue-syndrome-the-illness-trapping-people-in-their-bodies-in-depth

Watch Glenys Rumsey speak to Breakfast, alongside ANZMES President Fiona Charlton here (9 minutes):

At 12 noon, visit ANZMES YouTube channel, Facebook or LinkedIn page to hear Jaime Selzter from #MEAction speak (1 hour) about ME/CFS, diagnosis, severity, psychologising, and more.

Join the ANZMES Executive Committee as we ask the government to transform lives:

Journalist Lisa Davies will also cover ME/CFS on the 6 o’clock news TVNZ tonight. Stay tuned!

We’re seeing a sharp rise in cases globally. Some studies suggest prevalence has increased up to 15-fold and that nearly half of all people with long COVID meet criteria for ME/CFS. Some say it is now 1 in 22 people. While it may not be quite as dramatic here in Aotearoa, due in part to our early border controls, our estimates suggest the number has jumped from around 25,000 to a conservative 65,000, meaning thousands more are now living with this debilitating condition.

Since the pandemic, ME/CFS has gained more media attention, and increased research—particularly through long COVID funding, since both are infection-associated chronic conditions. But despite this progress, awareness is still lacking, especially for severe and very severe forms, like what Tammy and Rhiannon experience.

Raising awareness is crucial —but there’s still a long way to go. Healthcare professionals and policymakers need to be fully informed to ensure best practice guidance is followed in healthcare and policy decisions, including access to vital support services.

The government has not implemented reclassification despite ME/CFS meeting the government definition and the United Nations definition of disability. Even though, after our petitions, back in 2012 the Health Select Committee recommended reclassification and in 2023 advised Whaikaha to amend eligibility criteria for people with ME/CFS to access disability support services. This has not happened.

We’ve had two explanations for why ME/CFS still isn’t officially recognised as a disability. The first came from Health NZ the Chief Executive of Allied Health, speaking to the Health Select Committee on behalf of Te Whatu Ora. They claimed that the same support services are already available under Long Term Conditions. But in reality, that’s just not how it plays out for people with ME/CFS. The condition’s severity is often overlooked. NASC assessments for home help are designed for people either over 65 or requiring 24/7 care. But even those at that severe end only receive 21 hours of care per week—despite needing round-the-clock support.

The second explanation – and a vital clue as to why there’s been no change – came from Whaikaha during the Advisory Panel on eligibility criteria which ANZMES was a part of—before the new government disbanded it. They admitted that there simply wasn’t enough funding to include everyone who meets the definition of disability in DSS. In fact, Whaikaha was told it had overshot its budget and needed to cut costs.

What this really tells us is that the government has no idea how much funding is actually needed to support every disabled person in Aotearoa. But the solution is simple—they need to talk to us, listen to what’s required, and increase the budget accordingly.

If ME/CFS were officially recognised as a disability, it would bring much-needed legitimacy to the condition—hopefully putting an end to outdated and harmful ideas that it’s psychological.

For those at the very severe end, like Tammy, they can get 21 hours per week. But that leaves families taking on full-time care at enormous personal and financial cost. This disrupts entire families – leading to loss of income and independence, like we see in Glenys’s case. So more funding is required there.

But reclassification would also help the moderate-severe who currently don’t qualify for ANY home help but desperately need it to prevent their condition from worsening. We know that early intervention and appropriate support improve outcomes and would stop more people from ending up very severe.

This isn’t just about recognition—it’s about ensuring people get the care they need NOW before it’s too late. The cost of doing nothing is an increase of people requiring round-the-clock support, and the government has a responsibility to prevent this.

Press Release – World ME Day: A Call for Transformative Action in ME/CFS Care

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Release Date: 9th May 2025

ANZMES Urges Leadership to Reclassify ME/CFS and Launch Collaborative Initiatives for New Zealanders

May 12th, World ME Day, marks a pivotal moment to drive systemic change for over 65,000 Kiwis affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and related post-viral conditions. Amid the growing shadow of Long COVID, the Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) highlights the urgent need for equitable recognition, research, and resources.

The Crisis:  

ME/CFS, often overlooked and underfunded, devastates mobility, cognitive function, and quality of life. An alarming 50% of Long COVID sufferers meet ME/CFS criteria, compounding challenges for a vulnerable population.

The Cost of Inaction: Failing to address ME/CFS carries significant consequences for individuals, families, and society. Without immediate action, the healthcare system will continue to bear the heavy burden of unrecognised and untreated cases, leading to increased hospitalizations and prolonged disability. Moreover, the economic cost of lost productivity and caregiving responsibilities places unnecessary strain on communities and the wider economy.

ANZMES’ Proposals for Change:  

  1. Formal Partnership for Excellence: Collaborate with ANZMES to establish a Centre of Excellence, prioritising gold-standard care, research, and education.  
  2. Cross-party Group Formation: Introduce a dedicated parliamentary group to harmonise national policy with global best practices.  
  3. Disability Reclassification: Align New Zealand with international standards to guarantee fair access to essential supports.  

Addressing Systemic Gaps: Research underscores that individuals with ME/CFS suffer from significantly reduced health-related quality of life, ranking even lower than those with depression or multiple sclerosis. Despite this, New Zealand’s current healthcare system is marked by critical gaps, including:

  • Recognition Deficit: ME/CFS is not consistently acknowledged as a debilitating condition, leading to inequities in access to care and support services.
  • Outdated Treatment Protocols: Reliance on ineffective or disproven approaches leaves patients vulnerable to harm.
  • Limited Specialist Resources: Many regions lack trained professionals and specialized facilities, disproportionately affecting rural and underserved populations.
  • Underfunded Research: New Zealand trails behind in funding biomedical research for ME/CFS, delaying advancements in care.
  • Fragmented Collaboration: Poor coordination between healthcare providers and policymakers limits the development of cohesive, patient-centered strategies.

ANZMES President, Fiona Charlton, calls on policymakers to act decisively: “The voices of 65,000 New Zealanders cannot be ignored. This World ME Day, let’s ensure that ME/CFS care transforms from marginalised to world-leading.”

ANZMES, the National Advisory on ME/CFS (and associated conditions), is spearheading a campaign calling for urgent government action to address systemic healthcare gaps and improve the quality of life for these vulnerable populations.

Research underscores that individuals with ME/CFS suffer from significantly reduced health-related quality of life, ranking even lower than those with depression or multiple sclerosis. Despite this, many in New Zealand face inadequate medical support, outdated treatment protocols, and a lack of specialised facilities—leaving the most severely affected without essential care.

Drawing Inspiration: Examples of Global Success: Transformative change is possible. Internationally, countries like Norway, Australia, and the UK provide compelling examples:

  • In Norway, dedicated funding for biomedical research into ME/CFS has accelerated advancements in diagnostics and treatment.
  • The United Kingdom has recognised post-viral illnesses, including ME/CFS, as a public health priority, establishing support frameworks and raising awareness. The All-Party Parliamentary Group (APPG) has driven reforms in care pathways and funding allocations, enhancing access to resources and recognition of ME/CFS within the NHS. These initiatives demonstrate that meaningful progress can be achieved through robust policy, funding, and stakeholder collaboration.
  • In Australia, the government committed $1.13 million to Emerge Australia to integrate ME/CFS into healthcare, research, and education. This funding supports sustained advocacy and elevates ME/CFS care into national health policy frameworks.

In New Zealand, the Government’s engagement with Rare Disorders NZ, forming a cross-party parliamentary group, demonstrates a pathway for structured partnerships that could be emulated with ANZMES for addressing policy and practice for ME/CFS and post-viral conditions.

Join Us: Let’s Drive Change  

ANZMES stands ready to collaborate with decision-makers. Together, we can uplift lives and set a global benchmark in ME/CFS care.

This year, ANZMES invites its members, allies, and the broader public to join the campaign by sending lobbying letters to their local MPs or relevant portfolio ministers. These letters advocate for tangible change and highlight the immediate need for improved disability support and healthcare access. A draft letter is available on our website, guiding members on how to amplify their voices effectively.

Charlton emphasises, “We cannot afford another year of inaction. On World ME Day, we urge the government to prioritise the health and dignity of all New Zealanders with ME/CFS and Long COVID.”

We encourage everyone to stand in solidarity with those affected by ME/CFS. Together, we can create a system that supports and uplifts those in need. For more details and to access resources, visit www.anzmes.org.nz or contact us at info@anzmes.org.nz.

Ends.

Understanding ME/CFS and long COVID
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a long-term, multi-systemic illness affecting the nervous, endocrine, autonomic, cardiovascular, and immune systems. 

It is often triggered by a viral illness and involves catastrophic debilitation with symptoms that range in severity. Patients experience severe exhaustion, post-exertional malaise (PEM), unrefreshing sleep, cognitive impairment, and orthostatic intolerance (to list a few). With over 100-200+ potential symptoms, the condition’s impact can vary greatly, making diagnosis and management highly individualised. Roughly 25% of all ME/CFS cases are categorised as mild, 50% as moderate-severe and 25% as very severe.

Long COVID (LC) is characterised by persistent, unexplained symptoms following infection with COVID-19 (SARS-CoV-2) lasting more than 12 weeks and not explained by an alternative diagnosis. Both conditions share symptoms such as extreme fatigue, cognitive dysfunction, and post-exertional symptom exacerbation (PESE), with up to 50% of long COVID cases fitting the diagnostic criteria for ME/CFS.

COVID developing to ME/CFS

Using data from a long COVID research initiative run by the US National Institutes of Health (NIH), the incidence of ME/CFS is now considered 15 times higher than pre-pandemic levels, and that people with a history of COVID are almost eight times as likely to develop the chronic condition. 

Post-Exertional Malaise (PEM) 

Post-Exertional Malaise (PEM), also referred to as post-exertional symptom exacerbation (PESE) in the context of long COVID, is a debilitating response to normal, every-day activities in people with ME/CFS. For individuals with severe-very severe ME/CFS or LC, this can be triggered by sensory overload, such as exposure to light or even simple conversations. Repeated episodes of PEM can exacerbate these already severe symptoms, and even minimal exertion can lead to significant setbacks for the patient’s health and wellbeing.

About ANZMES
The Associated New Zealand ME Society is the National Advisory on ME/CFS. Established in 1980, ANZMES has been at the forefront of research, representation, and education for ME/CFS in Aotearoa/New Zealand. The organisation’s expertise comes from its reputable medical team of advisors, which includes a world renowned expert and MNZM recipient, a fellow of the Royal NZ College of General Practitioners (RNZCGP) and a network of academic researchers, clinicians, and representatives from the ME community.

The organisation is a registered provider of continuing medical education with the Royal New Zealand College of General Practitioners (RNZCGP) and is dedicated to improving the lives of those affected by ME/CFS, long COVID, and associated conditions.

ANZMES is a founding member of the World ME Alliance, and a member of the Neurological Alliance NZ, long COVID Alliance, Carer’s Alliance, Disabled Person’s Assembly (DPA) and Access Matters.

The organisation’s vision is to live in a world where Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS), long COVID (and associated conditions) are recognised, supported, diagnosed early, treated effectively, and cured.

The vision focuses the organisation’s mission as the trusted leader to fund and generate robust Aotearoa research, represent the global voice, and educate through best practice to improve outcomes.

The vision and mission drive the organisation’s purpose as the leading National Advisory to produce and deliver quality, reputable, authoritative, evidence-based information, data, research, and education. We represent the needs of the community to ensure best outcomes are the primary focus of healthcare, legislation, and services that affect people living with ME, long COVID, fibromyalgia, and dysautonomia.

Ends.

Read the full Transforming Lives Report (sent to MPs) here:

Transforming ME_CFS Care_ A Call to Action for Aotearoa New ZealandDownload

Contact Your Local MP: Advocate for systemic change by sending a lobby letter urging better recognition, funding, and care for ME/CFS. You can use this template:

2025 ME Day Member Lobby LetterDownload

Doctors Called to Advocate for Change: Ending Benefit Cuts for Hospitalised Patients and Addressing Systemic Care Gaps

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[Image: Phyllis Poon on Unsplash]

The Aotearoa New Zealand Myalgic Encephalomyelitis Society (ANZMES) has released a call to action urging healthcare providers to advocate for equitable policies and compassionate care for patients living with chronic illnesses such as Myalgic Encephalomyelitis (ME/CFS), Long COVID, and other complex conditions.

The NZ Doctor Rata Aotearoa published the opinion piece by ANZMES president, Fiona Charlton, on Tuesday 29th April 2025, with content available exclusively to subscribers.

A poignant example of the challenges faced by vulnerable patients is the case of Rhiannon Purves, who has ME/CFS and dysautonomia. During a prolonged hospital stay, she was subjected to New Zealand’s hospital benefit reduction policy, which drastically reduced her weekly benefit to $56.58, leaving her unable to afford critical living expenses.  

“This policy imposes severe financial and emotional hardships on hospitalised individuals, often compounding their medical challenges,” says Fiona Charlton, President of ANZMES. “Doctors have an essential role in advocating for their patients by championing policy change, assisting with bureaucratic processes, and addressing systemic inequities.”

The pressing need for action extends beyond policy reform. Patients with ME/CFS and Long COVID frequently encounter systemic care gaps, including misdiagnoses and outdated treatment protocols that worsen their conditions. ANZMES highlights practical steps for healthcare providers, including: 

– Writing detailed advocacy reports to ensure patients receive necessary care and support.  

– Participating in Continuing Medical Education (CME) training on ME/CFS, available through ANZMES’s Know M.E. Series and My Health Hub.  

– Supporting initiatives like ANZMES’s petition to abolish benefit cuts after 13 weeks of hospitalisation.  

“Doctors are not only caregivers but also key advocates for systemic change,” says Charlton. “By supporting vulnerable patients, healthcare providers can drive policies that prioritize fairness, inclusivity, and improved care outcomes.”  

ANZMES invites healthcare professionals and the broader community to join their efforts by signing the petition on Action Station and engaging with educational resources to better understand ME/CFS and Long COVID.  

Together, we can reimagine a healthcare system where no patient is left behind.  

Press release – World ME Day 2025: Busting Myths and Uniting Communities for ME/CFS Awareness  

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Release Date: 5th May 2025

New Zealand organisations Call for Action to Support 65,000 New Zealanders Living with ME/CFS  

May 12th marks World ME Day, a global initiative to raise awareness of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and challenge the myths that perpetuate stigma and hinder progress. This year’s theme, “Busting Myths with Facts,” highlights the urgent need to replace misconceptions with evidence-based understanding. Regional ME/CFS groups and organisations across New Zealand are joining forces to amplify this message and call for community support.

Debunking the Myths  

Persistent myths about ME/CFS continue to marginalise patients and delay meaningful change. Here are some of the most common myths—and the facts that dispel them:

– Myth: ME/CFS is a mental health condition.  

  Fact: ME/CFS is a biological illness that disrupts the brain, immune system, and metabolism. It often begins after an infection, such as the flu or COVID-19.

 

– Myth: ME/CFS is just about feeling tired.  

 Fact: Exercise can worsen symptoms and lead to long-term deterioration. Pacing is the recommended approach.

– Myth: You can exercise your way to recovery.  

  Fact: The defining symptom is Post-Exertional Malaise (PEM), a severe worsening of symptoms after even minor exertion.  

By sharing these facts, we can challenge stigma and foster understanding.

How You Can Help  

New Zealand ME/CFS organisations are calling on communities to unite and take action this World ME Day:  

  1. Raise Awareness: Share our social media posts, press releases, and website resources to spread the facts about ME/CFS. Use the hashtag #WorldMEDay [insert others] to join the conversation.  
  2. Support Blue Tea Sunday: Host or attend a Blue Tea event to raise funds for your local or national ME/CFS organisation.  
  3. Contact Your Local MP: Advocate for systemic change by sending a lobby letter urging better recognition, funding, and care for ME/CFS.  
  4. Fundraise: Organise community events to support regional and national ME/CFS groups in their advocacy and research efforts. 
  5. Unite Together: Join us in standing in solidarity with the 65,000 New Zealanders affected by ME/CFS. Together, we can create a brighter future.
  6. Find out more here: More info: https://anzmes.org.nz/world-me-day/myth-busting-world-me-day-2025/

Why It Matters

  

ME/CFS affects individuals of all ages, genders, and backgrounds, yet systemic gaps in healthcare and persistent stigma leave many without adequate support. Regional groups are working tirelessly to address these challenges, but they need your help to amplify their efforts.  

By taking action this World ME Day, you can help ensure that ME/CFS is recognized as a serious biological illness and that those affected receive the care and dignity they deserve. Learn more at: anzmes.org.nz/world-me-day/myth-busting-world-me-day-2025/

Join Us  

Let’s unite to challenge the myths, champion the facts, and drive change. For more information, resources, and ways to get involved, contact your local ME/CFS group. Together, we can make a difference.

ANZMES – National Advisory on ME

Complex Chronic Illness Support

M.E. Awareness NZ

ME Respite

ME Support NZ

MECFS Canterbury and West Coast

MEISS Otago and Southland

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