News

All the latest news from ANZMES.

PRESS RELEASE – ANZMES Releases Essential Resource for Healthcare Professionals to Manage Hospital Stays of Severe ME/CFS and long COVID Patients

by

ANZMES (the National Advisory on ME/CFS and a RNZCGP registered provider of continuing education) has released a short reference guide for secondary care. The resource acts as a guide for healthcare professionals in managing hospital stays for patients suffering from severe-very severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and long COVID (lC). It aims to improve patient care by addressing the unique needs and symptoms of patients with severe ME/CFS and lC during their hospital admissions.

“ME/CFS is a complex condition and its severity is often misunderstood by healthcare professionals. Severe patients are housebound. Very severe patients are bedbound, with very high needs requiring 24/7 care. Hospitalisation often occurs due to undernutrition, infections, and dysautonomic issues. Therefore, it is crucial that healthcare professionals have the knowledge to effectively manage patients during hospital admissions so as not to exacerbate their severe and debilitating symptoms,” says ANZMES president, Fiona Charlton.

“Our aim with this new resource is to provide a clear and concise reference guide for healthcare professionals to enhance patient care. While the assessment and evaluation of long COVID may differ from ME/CFS, the management of long COVID closely mirrors it, so we have leveraged our medical team’s expertise to develop a guide to support the effective care of these patients in a hospital setting.” She says.

The resource outlines essential strategies for managing severe symptoms, including intense muscle and joint pain, extreme sensitivity to light, sound, touch, and chemicals, impaired mobility often necessitating a wheelchair, severe gastrointestinal issues, and increased susceptibility to infections due to immune dysfunction.

“For very severe patients, a light touch of the arm can be interpreted by the body as pain. Bright light can cause post-exertional malaise. People with very severe ME/CFS and long COVID spend the majority of their lives in darkened rooms, wearing noise cancelling headphones and eye masks. They are unable to eat properly, or bathe and toilet themselves without full time carers, and it is often a family member who assumes this role.” The impact of this on everyone cannot be underestimated.

An overview of key recommendations include:

  • Sensory Adjustments: Dim lighting, minimise noise, and provide private rooms to reduce sensory stress.
  • Medication and Nutrition: Avoid histamine-releasing anaesthetics and muscle relaxants. Use medications like propofol, midazolam, and fentanyl with caution. Monitor hydration and consider IV saline for orthostatic intolerance.[1]
  • Activity and Rest: Recognise that even minimal interactions, such as being spoken to or exposure to light, can trigger PEM. Prioritise rest and avoid any unnecessary activity.
  • Communication and Cognitive Support: Involve family and caregivers as representatives, especially when the patient cannot communicate; or simplify communication by providing written instructions and allowing extra time for patients to process information.
  • Care and Support: Recognise the psychological impact, validate the severity of conditions, and provide access to counselling and mental health support. Include family members or caregivers in discussions and allow them to stay with the patient if requested.

ANZMES emphasises the importance of personalised care plans, the involvement of patient’s family members and their regular health team to understand the severity of their condition. The guide also encourages connections with local support groups and resources for additional advocacy and support for not only patients, but also their carers to avoid burnout. Remote consultations and home visits are recommended to avoid unnecessary hospital admissions.

ANZMES president, Fiona Charlton concludes “We believe that education is key to improving outcomes for patients with severe-very severe ME/CFS and long COVID. By providing this resource, we aim to enhance the knowledge and confidence of healthcare professionals so they are equipped when these patients are admitted under their care.”

– – – – – – – –

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, and immune systems. Patients experience severe fatigue, post-exertional malaise (PEM), unrefreshing sleep, cognitive impairment, and orthostatic intolerance. 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.[2] [3]

Long COVID 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.

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

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 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 and long COVID. ANZMES is a founding member of the World ME Alliance.

[1] Lapp (n.d.). Advice for Persons with ME/CFS Anticipating Anesthesia or Surgery. Hunter-Hopkins Center, PLLC. Retrieved from: https://drlapp.com/resources/advice-for-pwcs-anticipating-anesthesia-or-surgery/

[2] C-J Chang, et.al., (2021). A Comprehensive Examination of Severely Ill ME/CFS Patients Healthcare (Basel). 2021 Oct; 9(10): 1290. Published online 2021 Sep 29. doi: 10.3390/healthcare9101290

[3] S.L. Grach, et.al., (2023). Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. CONCISE REVIEW FOR CLINICIANS| VOLUME 98, ISSUE 10, P1544-1551. https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext

PRESS RELEASE – Critical Reforms Needed for ME/CFS Patients in Aotearoa: Coalition Calls on HDC for Action

by

The Health and Disability Commissioner (HDC) is currently reviewing the Health and Disability Commissioner Act 1994 (the Act) and the Code of Health and Disability Services Consumers’ Rights (the Code). These pieces of legislation aim to promote and protect the rights of health consumers and disability services consumers, ensuring the fair, simple, speedy, and efficient resolution of complaints relating to the infringement of these rights.

In a bid to drive critical improvements in healthcare services for ME/CFS patients, the coalition of organisations representing the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) community in Aotearoa New Zealand has submitted a comprehensive report directly to the HDC The submission calls for critical improvements in healthcare services for ME/CFS patients and highlights current rights violations under the Code.

The report states that ME/CFS patients frequently encounter healthcare providers who lack the necessary knowledge and expertise, leading to substandard care. Currently, there are no senior specialists in ME/CFS in New Zealand, exacerbating the inadequate dissemination of up-to-date clinical guidance. Despite ME/CFS meeting the New Zealand government and United Nations definitions of ‘disability,’ patients are excluded from Disability Support Services (DSS) funding, nor are they supported through Long Term Support – Chronic Health Conditions (LTS-CHC) funding. This has resulted in significant shortfalls in funding for essential services and practical supports that could vastly improve their quality of life. The report also highlights that some health practitioners continue to recommend discredited treatments such as Cognitive Behavioural Therapy and Graded Exercise Therapy without informing patients about the lack of evidence for these treatments and their potential risks. This lack of transparency prevents patients from making informed decisions about their healthcare.

The coalition’s report emphasises that these issues are violations of the Code. Specifically, the right to services of an appropriate standard (Right 4) and the right to be fully informed (Right 6) are being infringed upon. The absence of knowledgeable practitioners and senior specialists means patients are not receiving the care they are entitled to, while the lack of transparency about treatment risks denies them the ability to make informed choices.

In this submission, the collective calls for medical education institutions to ensure comprehensive and up-to-date training on ME/CFS for health professionals. This includes adopting recognised diagnostic criteria, to ensure accurate diagnosis and effective symptom management. Furthermore, it urges that healthcare providers must inform patients when recommending treatments that lack a quality evidence base or may be harmful. Ensuring transparency and informed consent is essential to protect patients from harm and enable them to make well-informed decisions about their healthcare. In addition, Health NZ and the Ministry of Health must be held accountable for adequately supporting ME/CFS patients. This includes ensuring that health professionals and support services are sufficiently equipped to meet the specific needs of this patient group and allocating adequate funding and resources for multidisciplinary care and practical supports, such as home help.

ME/CFS patients must receive the adequate diagnosis, care and support they need. If the HDC addresses these critical issues within the Act and the Code, the collective hopes that New Zealand can significantly improve the quality of life for ME/CFS patients and uphold their rights within the healthcare system.

– – – – – – – – – – – – – – – – – – – 

The submission was compiled by Aotearoa Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collective: 

PRESS RELEASE – Unified Advocacy Groups Amplify Consumer Voices in Disability Support Services Review

by

In a significant demonstration of unity, leading disability and advocacy organisations have come together to amplify the voices of consumers in the review of New Zealand’s Disability Support Services (DSS). This joint submission, sent to the review panel chaired by Sir Maarten Wevers, and including Leanne Spice, and Reverend Murray Edridge, speaks up about the urgent and critical need for inclusive and equitable disability support across the nation. The review has been prompted by budget concerns at Whaikaha for currently recognised conditions receiving these services. However, it is essential for the government and the review panel to acknowledge the broader disability landscape in New Zealand as there is far more disability that goes unrecognised and unsupported. Thousands of individuals who should be entitled to services are not receiving the necessary support.

The coalition of organisations—including ADHD New Zealand, ANZMES, Autism New Zealand, Complex Chronic Illness Support, Ehlers-Danlos Syndromes New Zealand, Epilepsy New Zealand, Foetal Anti-Convulsant Syndrome New Zealand, FASD-CAN Incorporated Aotearoa, Rare Disorders NZ, Stroke Foundation of New Zealand, and Tourettes Association of New Zealand—represents a diverse range of conditions that currently fall through the cracks of the existing DSS framework. This joint effort arises from the discontinuation of the Whaikaha DSS Eligibility Review Advisory Group, which previously served as a vital channel for direct consumer feedback from these organisations.

The submission brings to light several issues experienced by this coalition that urgently need to be addressed to create a fairer and more inclusive DSS.The termination of the Advisory Group has left a void in consumer representation. Incorporating consumer voices in the review process is essential to ensure that support services meet consumer needs, and are both equitable and inclusive. Current DSS criteria exclude many conditions that meet the New Zealand government and the United Nations definition as disabilities. This exclusion results in woefully inadequate support due to insufficient identification, coding, tracking, and funding.

Other key issues highlighted are significant regional disparities in service access due to the “postcode lottery” effect, necessitating integrated support systems across all regions. Systematic barriers, such as the need for high health literacy and effective communication with health professionals, disproportionately affect those with cognitive impairments or complex needs. The current system’s sole reliance on formal diagnoses delays support, creating inequities, particularly between paediatric and adult services. Fragmentation across government agencies results in inconsistent care and additional stress for individuals with disabilities, emphasising the need for better integration. Existing funding mechanisms are inadequate to meet the growing needs, requiring adjustments tied to inflation and increased government investment. Early identification and intervention strategies are crucial for preventing the progression of disabilities and improving long-term outcomes.

The submission recommends revising the DSS eligibility criteria to include a wider range of conditions recognised by the UN and New Zealand government definitions of disability, ensuring these are properly identified, coded and tracked. It calls for improved regional integration to eliminate the “postcode lottery” and silo funding effect, ensuring customer-focused, integrated, and equitable access to services across all regions. The application and assessment processes should be streamlined to be more accessible, particularly for those with cognitive impairments or severe fatigue. Enhancing the NASC processes is essential to reduce the administrative burden on individuals and create a more compassionate support system. Increased funding for DSS is advocated to support all eligible individuals, emphasising the long-term benefits and cost savings of early and consistent support across the life span. The development of integrated care pathways for early intervention services and the implementation of a centralised system for sharing information across agencies are crucial for cohesive care. Additionally, creating a “catch net” for individuals who fall through the cracks of the current system will ensure they receive necessary reassessment and support.

By considering these critical issues and implementing necessary changes in DSS criteria, Aotearoa New Zealand can move towards a more supportive and fair disability support landscape.

– – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – –

The organisations involved in this submission represent significant segments of the New Zealand population affected by various disabilities:

  • ADHD New Zealand: ADHD New Zealand estimates that around 280,000 people in New Zealand have ADHD, affecting approximately 2.4% of children aged 2-14 years. It is underdiagnosed in adults due to diagnostic criteria initially developed for children.
  • ANZMES (The Associated New Zealand Myalgic Encephalomyelitis Society) and
    Complex Chronic Illness Support:     There are approximately 25,000 – 45,000 people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and potentially over 400,000 when considering those who meet the criteria of long COVID induced ME/CFS.
  • Autism New Zealand: Approximately 93,000 people in New Zealand are on the autism spectrum, translating to about 1 in 54 people.
  • Ehlers-Danlos Syndromes New Zealand: There is likely to be 1:500 people with Ehlers-Danlos Syndrome however, they are currently rated 1:5000 due to lack of coding and tracking, leading to delays and misdiagnoses.
  • Epilepsy New Zealand: Epilepsy is a condition that affects 1 in 100 people, approximately 50,000 New Zealanders. 70% of people living with epilepsy gain good control on anti seizure medication however, 30% will not get control and this has long lasting effects.
  • FACSNZ (Foetal Anti-Convulsant Syndrome New Zealand): The exact prevalence is unknown due to the complexity of diagnosis and underreporting. However, the condition is recognised to be a significant risk for children exposed to anti-seizure medicines during pregnancy.
  • FASD-CAN Incorporated Aotearoa (Fetal Alcohol Spectrum Disorder – Care Action Network): Te Whatu Ora estimates that between 3 – 5% of people born each year may be affected by the effects of prenatal alcohol exposure each year. This implies that around 1800 – 3000 babies, approximately 8 babies per day, may be born annually with FASD.
  • Rare Disorders NZ: Approximately 300,000 New Zealanders, 6% of the population, live with a rare disorder, with half of these individuals being children. Rare disorders, which have a prevalence of 1 in 2,000, encompass over 7,000 distinct conditions, each with varying levels of support needs.
  • Stroke Foundation of New Zealand: An estimated 89,000 are currently living with the effects of their stroke. Over 10,000 strokes occur each year in New Zealand, making it the second-leading cause of death and a leading cause of adult disability.
  • Tourettes Association of New Zealand (TANZ): Tourette Syndrome affects approximately 1 in 100 school-aged children in New Zealand. Up to 85% of individuals with this disability experience co-occurring conditions such as ADHD, OCD, anxiety, and mood disorders​.

ANZMES responds to The Conversation

by

The primary contributing factor of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a broken energy system (often triggered by a virus or other environmental factors) not chronic pain. 1 2 3 4 The defining characteristic of ME/CFS and long COVID is post-exertional malaise (PEM), which refers to the worsening of symptoms following even minor physical or mental exertion. 5 6 7

Pain is just one of many symptoms experienced by individuals with ME/CFS, but there is no research to support the notion that it is due to hypersensitivity of nerve signals to the brain. 8 9   Symptoms can also include severe fatigue, sleep problems, cognitive issues (often referred to as “brain fog”), and orthostatic intolerance. While both ME/CFS and long COVID can involve complex neurophysiological responses, there is no conclusive evidence at this time to suggest that pain in ME/CFS is solely due to nerve hypersensitivity.

We write this in response to a misleading article published in The Conversation on June 26th 2024 (see here), suggesting that ME/CFS and long COVID result from chronic pain, and that treating hypersensitive nerves offers hope for these two conditions; we clarify that ME/CFS is far more complex.

Fibromyalgia is believed to be a chronic pain condition which is most commonly treated by relieving or managing the pain (although this is also an over-simplification of a complex condition). 10 11 12 However, ME/CFS and long COVID are not easily managed by addressing pain alone, because of the 100-200+ symptoms that arise due to the malfunctioning neuroendocrine, immune, and autonomic systems of the body. 13 14 Current treatment approaches often focus on symptom management, but leave many people with ME/CFS without adequate relief.15

An individual with ME shared “For myself, I feel like ME/CFS has halted my life. I went from running Ultra Marathons, completing Iron Mans and being on-the-go every day to now spending days laying down, too weak to even lift my phone up when I’m at my worst.” 16

As of today, there is no cure for ME/CFS. Further research, better funding, and enhanced healthcare provider education is needed for developing comprehensive treatment approaches that address the multifaceted nature of this condition. 

What is ME/CFS?

Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a complex, chronic illness which affects multiple body systems, including the neurological, immune, and endocrine systems. It manifests through a variety of symptoms such as profound exhaustion, cognitive dysfunction, muscles and joint pain, unrefreshing sleep, headaches, sensory issues, and more. These symptoms are not alleviated by rest and are exacerbated by physical or mental activity. Prevalence in Aotearoa/NZ is estimated due to insufficient coding and tracking in the health system. Prorated overseas data (pre-pandemic) suggests that there were at least 25,000 people living with ME/CFS, that’s 1 in 250 adults and 1 in 134 youth. Based on US medical insurance claims, the NZ figure is more likely to be 45,000. With up to fifty percent of long COVID cases meeting the diagnostic criteria for ME/CFS these numbers will rise exponentially. ME/CFS is currently classified as a “chronic illness” rather than a disability in New Zealand, which poses significant challenges for policy recognition, support services, and funding. As a consequence, the lack of awareness and education among healthcare professionals leads to inaccurate patient diagnosis, and ineffective treatment and management plans.

Who is ANZMES?

We are the National Advisory on ME/CFS (and associated conditions) in Aotearoa/New Zealand. With four decades of knowledge and experience, we are the trusted leaders in ME/CFS research, representation, and education. Our expertise comes from a reputable medical team of advisors, including 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/CFS community. The executive committee comprises experts in their respective fields for governance, policy, leadership, representation, and education.

Always a trail-blazer, it was the first ME charity of its kind in the world, established in 1980, as ANZMES, to provide support, information dissemination, and representation, achieving past outcomes through dedication, passion, time, and knowledge of lived experience. Today, the organisation leads as a Royal New Zealand College of General Practitioners (RNZCGP) Continuing Medical Education (CME) Registered Provider, proud funder of vital research, and steward of the community voice. We continue to disseminate evidence-based best practice. We represent the ME/CFS voice nationally in our advisory capacity, and globally through advocacy and leadership, as a founding member of the World ME Alliance.

1 The ME association (2019). MEA Summary Review: The role of Mitochondria in ME/CFS. Retrieved from: https://meassociation.org.uk/wp-content/uploads/MEA-Summary-Review-The-Role-of-Mitochondria-in-MECFS-12.07.19.pdf

2 Harvard Health (2019). Chronic fatigue syndrome: Gradually figuring out what’s wrong. Retrieved from: https://www.health.harvard.edu/blog/chronic-fatigue-syndrome-gradually-figuring-out-whats-wrong-201911141822

3 ANZMES (2023). World ME Day asks you to learn about the broken energy system in ME/CFS. Retrieved from: World ME Day asks you to learn about the broken energy system in ME/CFS – PRESS RELEASE – ANZMES

4 Health Rising (2022). Novel Approach Brings New Insights Into ME/CFS Mitochondria. Retrieved from: https://www.healthrising.org/blog/2022/03/27/novel-approach-mitochondria-chronic-fatigue-syndrome/

5 ANZMES (2023) Voices of ME. Retrieved from: https://anzmes.org.nz/voices-of-me/

6 ANZMES (2023). National Advisory on ME releases Best Practice Guidance with clinician and researcher support. Retrieved from: https://anzmes.org.nz/national-advisory-on-me-releases-best-practice-guidance-with-clinician-and-researcher-support/

7 ANZMES (2023). ANZMES release Resources for Primary Care. Retrieved from: https://anzmes.org.nz/anzmes-release-resources-for-primary-care/

8 Tate W, Walker M, Sweetman E, Helliwell A, Peppercorn K, Edgar C, Blair A, Chatterjee A. Molecular Mechanisms of Neuroinflammation in ME/CFS and Long COVID to Sustain Disease and Promote Relapses. Front Neurol. 2022 May 25;13:877772. doi: 10.3389/fneur.2022.877772. PMID: 35693009; PMCID: PMC9174654.

9 RNZ Health (2023). Long Covid and ME/CFS are the same illness, researcher says. Retrieved from: https://www.rnz.co.nz/national/programmes/ninetonoon/audio/2018892129/long-covid-and-me-cfs-are-the-same-illness-researcher-says

10 Fibromyalgia – Arthritis New Zealand

11 Healthline (2023). Everything You Need to Know About Fibromyalgia. Retrieved from: Fibromyalgia: Symptoms, Treatment, Causes, Triggers, and More (healthline.com)

12 Mayo Clinic (2021). Fibromyalgia. Retrieved from: Fibromyalgia – Symptoms & causes – Mayo Clinic

13 Tate W, Walker M, Sweetman E, Helliwell A, Peppercorn K, Edgar C, Blair A, Chatterjee A. Molecular Mechanisms of Neuroinflammation in ME/CFS and Long COVID to Sustain Disease and Promote Relapses. Front Neurol. 2022 May 25;13:877772. doi: 10.3389/fneur.2022.877772. PMID: 35693009; PMCID: PMC9174654.

14 ANZMES (2022).World ME Day – Learn From ME. Retrieved from: World ME Day – Learn From ME – ANZMES

15 Tuller, D (2024). Trial by Error: The Conversation recycles biopsychosocial nonsense. https://virology.ws/2024/06/28/trial-by-error-the-conversation-recycles-biopsychosocial-nonsense/

16 ANZMES Member (2023). Retrieved from: Voices of ME – ANZMES

ANZMES Grant and Scholarship Programme to Boost ME/CFS and long COVID Research for 2024

by

ANZMES, New Zealand’s national advisory body for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), is pleased to announce our grant and scholarship programme is now open for the second time for postgraduate students and academic researchers. The programme is aimed at supporting students who are interested in researching ME/CFS and long COVID.

There will be six funding opportunities awarded each year to Postgraduates who undertake research that furthers understanding, treatment, or prevention of ME/CFS and long COVID, including two $25,000 grants to support laboratory research studies and four $5,000 scholarships to support students undertaking research projects. Academic researchers can also apply for the grants.

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 President, Fiona Charlton, says “we are excited to offer this programme again for the second year after starting it in 2023. This programme, aims to support the next generation of researchers and innovators to build a vital source of New Zealand based research, contributing to knowledge and scientific progress that will benefit the community.

“Promoting and investing in ME/CFS-focussed research is a core objective of the organisation. Our funding programme is made possible by the support of our members.”

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 for a research project on ME/CFS or ME/CFS and long COVID.

Four scholarship awards will be offered each year 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.

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

Applications for 2024 awards open 31 May and close 31 July 2024.

Further information and application forms are available at https://anzmes.org.nz/research-grants-and-scholarships-programme

World ME Day 2024 – Press release

by

Date: 24.04.2024

World ME Day Sheds Light on Global Health Crisis: Millions Affected by COVID triggered cases

The National Advisory on ME (ANZMES) is calling on Kiwis to come together for World ME Day as we battle a global health crisis.

Already worldwide there are an estimated 25 million people with Myalgic Encephalomyelitis (ME) also known as Chronic Fatigue Syndrome (CFS).

There has been a significant increase in cases of ME with a shift to COVID-19 being the main trigger for this disabling illness.

There are estimated to be 65 million cases of long COVID worldwide and 50% meet the criteria for an ME diagnosis.

This World ME Day, May 12, 2024, marks the 55th anniversary since the World Health Organization (WHO) officially acknowledged ME in their International Classification of Diseases. Despite this, there is still no universal cure or treatment.

To highlight this global health crisis and demand that action is taken now, ANZMES proudly stands alongside World ME Alliance members across the globe calling Kiwis to get involved and become a #GlobalVoiceForME to amplify our efforts to be heard.

ANZMES is the National Advisory on ME and is a founding member of the World ME Alliance, supporting the ME community since 1980.

ANZMES president, Fiona Charlton, says the government needs to recognise that the pandemic is clearly not over and more action is needed to protect and support people.
“The convergence of ME and COVID-19 has created a perfect storm, amplifying the challenges faced by patients and healthcare providers.

“Health protections have been removed but cases keep rising and people are suffering,” she says.

ME is a debilitating chronic illness that is often misunderstood, characterised by post-exertional malaise (an exacerbation of symptoms after minimal exertion), and a range of other symptoms that significantly impact daily functioning, such as pain, cognitive impairment, and orthostatic intolerance (blood pressure and volume dysregulation).

In 1969, the World Health Organisation classified ME as a neurological disease and included ME and CFS in 2019 under post viral syndrome. An estimated 80% of people with ME/CFS develop it after a virus.

Given the similarities in symptoms both ME and long COVID benefit from a similar approach to support and management.

Associate Professor Mona Jeffreys at Te Herenga Waka / Victoria University of Wellington says “The COVID-19 pandemic has resulted in large numbers of patients with long COVID, many of whom meet diagnostic criteria for ME. “ME is a debilitating condition, which cannot be treated, but with compassion and evidence-based care, the symptoms and their impact can be lessened.

“I call on all health professionals treating someone with ME to understand that this is a neurological, not psychological, illness. “Encouraging your patient to exercise is likely to worsen their fatigue and post-exertional malaise. “Suggesting treatments such as graded exercise therapy and cognitive behavioural therapy is outdated and is not evidence-based. “Investigating symptoms of POTS, that can respond to treatment, is important.

“The best thing you can do is to familiarise yourself with the Best Practice Guidelines, and treat patients accordingly.” The National Advisory on ME released easy to follow best practice in December 2023.

The hard facts

The latest Health New Zealand data shows 3,873 COVID-19 cases were reported in the last week and 21 deaths were attributed to the virus (as at 23/04/2024)[2]. 78% more sick leave was taken in 2022 (than 2020) and wait times for emergency patients were exceeded by 95% of DHBs, in 2022.

Of 65 million long COVID cases, half may develop ME.[3] Added to the existing estimated numbers globally, that’s 57.5 million people worldwide significantly ill with ME/CFS. In Aotearoa this equates to 416,350 people with this debilitating condition, up from an estimated 25,000.

Global research shows reinfection continues to pose a significant threat of post-viral complications with implications for long-term socioeconomic burden.[4],[5]

“Without appropriate management, the window for recovery gets smaller and smaller, and that is why international best practice must be implemented” says Charlton.

Research also highlights a disparity between government funding and level of disease burden for ME, in comparison to other chronic illnesses.[6]

Emeritus Professor Warren Tate, of the University of Otago says, “the major clinical subgroup of Long COVID, the post viral syndrome arising from the global pandemic, has brought a greater awareness of the needs of the many ME/CFS patients suffering from a very similar ongoing debilitating fatigue illness.”

“Long COVID provides the opportunity for there finally to be a focus on education, and standardised best practice management and social support for the significant numbers of patients of both groups.

“Managing the burden on families and their communities, and understanding how ME/CFS and Long COVID affect our health and economic systems looms as an urgent priority not only for New Zealand but for all countries.” says Tate.

World ME Day serves as a catalyst for action urging the government and public health authorities to allocate more resources to develop strategies for early identification, diagnosis, and management of post-viral illness, including appropriate support for individuals with ME.

Each national organisation around the globe has the opportunity to foster change by building relationships with local and national governments, encouraging them to develop appropriate policies and programmes to deliver vital services for care and intervention. Each Government has the power to advocate for recognition of this global health crisis, and ensure that the World Health Organisation implements action to tackle this serious and significant problem.

“There are many very sick people battling for support and being ignored. There is no cure or universal treatment for ME and no dedicated funding or efforts from the government to try to fix this. As the National Advisory on ME, we have delivered best practice guidance to the government and all medical bodies in Aotearoa/NZ and believe it must be adopted to deliver the standard of care required.

We need world health leaders to step up and take action but we also need the support of everyday individuals in the community,” says Charlton.

“When we unite as a Global Voice for ME we are showing health and government officials that they must listen, they must address needs, and they must bring vital change now.” Charlton says.

Each year the ME/CFS organisations throughout New Zealand join together as a collective to participate in World ME Day and share the same message. This year the collective joins the global voice for ME and encourages everyone to get involved in the following ways –

How to take action for World ME Day 2024:

  • Send – a letter to your local MP or the Health Minister, Dr. Shane Reti asking for them to take action on behalf of the ME and long COVID community.
  • Share – be a #GlobalVoiceForME, share your ME story on social media, share your lived experience or make a poster to educate others about ME. Use the hashtags #GlobalVoiceForME #GlobalHealthCrisis #NZCollectiveVoiceForME.
  • Participate – send ANZMES your photo holding a piece of paper that says how many years you’ve been unwell with ME, to be used in a video on social media.
  • Learn – learn about ME and long COVID so you can offer support to friends and family living with the condition – visit anzmes.co.nz and worldmealliance.org
  • Fundraise – host a ‘Blue Sunday’ Tea Party for ME to raise funds see https://the-slow-lane.com/blue-sunday/ for more information.
  • Light it up – Councils and business owners can light their place up in blue in solidarity for ME.

Join us in acknowledging World ME Day and taking meaningful steps toward a future where individuals with ME receive the recognition, care, and support they deserve.

Aotearoa/NZ ME/CFS Collective includes:

ANZMES – National Advisory on ME

Complex Chronic Illness Support

M.E. Awareness NZ

MECFS Canterbury

MEISS Otago and Southland

ME Support NZ

Rest Assured Charitable Trust

Who are ANZMES?

We are the National Advisory on ME in Aotearoa/New Zealand. With four decades of knowledge and experience, we are the trusted leaders in ME education, representation, and research. Our expertise comes from a reputable medical team of advisors, including 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 executive committee comprises experts in their respective fields for governance, policy, leadership, representation, and education.

Always a trail-blazer, it was the first ME charity of its kind in the world, established in 1980, as ANZMES, to provide support, information dissemination, and representation, achieving past outcomes through dedication, passion, time, and knowledge of lived experience. Today, the organisation leads as a Royal New Zealand College of General Practitioners (RNZCGP) Continuing Medical Education (CME) Registered Provider, proud funder of vital research, and steward of the community voice.

We continue to disseminate evidence-based information nationally, and represent the ME voice globally as a founding member of the World ME Alliance through advocacy and leadership. ANZMES latest education programme – Know M.E. – is a video podcast and news series featuring up-to-date, evidence based research and information on ME and Post COVID Conditions.

Contacts:

ANZMES – National Advisory on ME

Contact info – Angela Cayford – info@anzmes.org.nz

Complex Chronic Illness Support

Contact info – Miranda Whitwell – info@ccisupport.org.nz

M.E. Awareness NZ

Contact info – Rose Camp –  m.e.awareness.nz@gmail.com

MECFS Canterbury

Contact info – Nicola Stokes – info@mecfscanterbury.nz

MEISS Otago and Southland

Contact info – Heather and Kerry – meiss.support@gmail.com

ME Support NZ

Contact info – Vanessa Atkinson – info@mesupport.org.nz

Rest Assured Charitable Trust

Contact info – Phil Morton –  info@restassured.org.nz

ANZMES submits to the Royal Commission

by

The New Zealand Royal Commission has opened an inquiry into the COVID-19 pandemic, seeking to gather information from New Zealanders (individuals and organisations) for their “COVID-19 Lessons Learned” Inquiry to ensure that Aotearoa/New Zealand is as prepared as possible for future pandemics.

royal commission lessons learned blue writing logo

Through an online form, which closes 24th March 2024, people can have their say in English, Te Reo Māori, NZ Sign Language, Chinese, Tongan, Samoan, and Hindi: https://haveyoursay.covid19lessons.royalcommission.nz/

The two questions are:

Question 1: Looking back – what would you like the Inquiry to know about your experiences of the pandemic? 

Question 2: Moving forward – what lessons should we learn from your experiences so we can be as prepared as possible for a future pandemic?

ANZMES has made a submission in consultation with the Aotearoa/NZ ME/CFS organisations as follows:

As the National Advisory on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), we appreciate the opportunity to provide feedback for the inquiry into the pandemic response, from the perspective of people living with ME/CFS. ANZMES and the regional Aotearoa/New Zealand ME/CFS organisations have been at the forefront of supporting individuals with both ME/CFS and long COVID and advocating for their rights and needs, especially during public health crises, such as the recent pandemic. We provide the following feedback and experiences at the request of our members and the regional organisations.

Question 1: Looking back – what would you like the Inquiry to know about your experiences of the pandemic?

ME/CFS is a debilitating chronic illness characterised by post-exertional malaise (an exacerbation of symptoms after minimal exertion), and a range of other symptoms that significantly impact daily functioning, such as pain, cognitive impairment, and orthostatic intolerance (blood pressure and volume dysregulation). There has been a significant increase in cases of ME with a shift to COVID-19 being the main trigger. There are estimated to be 65 million cases of long COVID worldwide and at least half of these meet the criteria for an ME/CFS diagnosis.1 ME/CFS and long COVID are both post-viral illnesses that benefit from a similar approach to support and management. The National Institute for Health and Care Excellence (NICE) in the United Kingdom acknowledges that the physical symptoms of ME/CFS can be as disabling as those in multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions.2 Other research shows that people with ME/CFS score lower overall on health-related quality of life tests than most other chronic conditions. Throughout the pandemic, individuals with ME/CFS have faced unique challenges and vulnerabilities that have often been overlooked in the broader public health response. We highlight the following key areas of concern:

  • Lack of nuanced response for prevention and protection: One of the key shortcomings in the pandemic response was a lack of nuanced approach to prevention and protection for individuals with ME/CFS, with a failure to recognise their specific vulnerabilities. This includes the increased potential for severe exacerbation of symptoms following vaccination, due to immune system dysregulation,3 as well as increased risk of post-viral complications. Emerging studies, including patient-led surveys, suggest people with ME/CFS have a higher risk of worsened ME/CFS if infected with COVID-19. For example, an ME Action survey of patients suggested: more than three quarters (76%) of respondents reported that COVID-19 made their ME/CFS symptoms worse. Over two-thirds of respondents said the worsening in symptoms had lasted more than 6 months.4
  • Adverse reactions – Despite being given adverse reaction data in November 2020, the Ministry of Health did not act to protect the vulnerable ME/CFS population from subsequent adverse reactions by allowing exemptions to further vaccination without penalty, and by continuing to advise and encourage clinicians to continue to advocate for continual vaccinations despite the harm benign caused at high frequency.
  • A belated lowered vaccine dose was offered after most individuals had taken the original dosage multiple times.
  • The process of reporting adverse effects (CARM) was overly complicated for ill people, and had to be processed through a GP, when GPs were over-run with COVID-19 cases and not seeing patients. Many did not officially report their adverse effects as a result.
  • Consequences of vaccine mandates in people with ME/CFS: A 2021 ANZMES survey of 395 people with an ME/CFS diagnosis highlights the impact of mandates, due to vaccine effect, on the state of ME/CFS illness/wellness, with 60% of respondents experiencing a level of deterioration in their health, with 3.1% experiencing a severe relapse, and a significant number experiencing reduced capacity to work and increased care requirements. People with ME/CFS also raised concerns over difficulties reporting adverse reactions due to the inability to get appointments with their GP and complex Centre for Adverse Reactions Monitoring (CARM) forms that were inaccessible due to neurological symptoms, such as brain fog, experienced by people with ME/CFS. It is also important to note that a small number of individuals with ME/CFS report an improvement in their chronic condition after vaccination, which experts propose is also related to the dysregulated immune system. 
  • Lack of funding for long COVID support: Many people developed long COVID, however no extra funding was allocated for their care. The regional ME/CFS organisations were unable to access government funding to ensure that there was clinical, mental, and social wellbeing support for people developing long-term post-viral illness. Long COVID has put a strain on existing support services, due to a lack of suitable services available, forcing them to seek help from ME/CFS charities, such as ANZMES and regional support organisations [Complex Chronic Illness Support, ME/CFS Canterbury, ME Support NZ, MEISS Otago & Southland, and Rest Assured Charitable Trust]. Over 20% of Complex Chronic Illness Support referrals are for long COVID – with no dedicated funding to support this increase in demand for support services. People with long COVID and ME/CFS need increased recognition of the disabling nature of their conditions and increased support and this perspective is shared by international public health experts.5
  • Lack of consultation: ME/CFS organisations and experts were not invited to join the Expert Advisory Group for long COVID despite being the key source of support for people with long COVID due to decades of experience managing post-viral illness. ANZMES put forward names of expert clinicians and researchers and made considerable effort to make contact with decision-makers to no avail. At the time the public opinion was that this was a “new phenomenon” despite our organisations best efforts to advise otherwise. ANZMES was the first ME/CFS organisation in the world, founded in 1980. CCI Support was formed by ANZMES representatives the following year. ME/CFS Canterbury was formed in 1985. All these organisations have been dealing with diagnosis, treatment, and management of post-viral illness from the beginning.
  • Lack of clear communication about post-viral complications: Because of lack of consultation with experts in the field as mentioned above, there were no timely public health messages about the risk of developing long COVID or ME/CFS nor the need to rest to aid recovery and prevent complications. Brief belated guidance about resting was produced but missed the seriousness of what would happen if people ignored this guidance.
  • Health protections: Early health protections were beneficial to vulnerable individuals, these include; closing the borders to the Delta strain of the virus, isolation and travel restrictions, increased flexibility of services and workplaces (home delivery, work from home options), mask advice. However, removing the mask mandates and reducing infection isolation times were poor decisions that increased the spread of the virus. Global research shows that despite high vaccination rates reinfection continues to pose a significant threat of post-viral complications with implications for long-term socioeconomic burden.6 7
  • Protections have been removed but the pandemic is not over: The threat to public health, in NZ, is clearly ongoing with 5575 cases reported in the last week and 21 deaths attributed to the virus (as at 11/03/2024).8 78% more sick leave was taken in 2022 (than 2020) and wait times for emergency patients were exceeded by 95% of DHBs, in 2022.9 People with ME/CFS and long COVID are more vulnerable to the COVID virus, with hospitalisation a likely outcome, as well as a worsening of their existing symptoms and functional capacity.  This has led to a greater number of people living with ME/CFS and long COVID in continued isolation, beyond original lockdowns, to protect themselves from an ongoing threat. This affects income, socialisation, mental health, and ability to carry out normal activities, such as grocery shopping or attending GP clinics. The removal of mask mandates acts as an additional barrier to healthcare access for vulnerable people with ME/CFS as there is an increased risk of infection with lack of certainty that staff will use high quality masks (N95/P2/FFP2) during consultations. 
  • The Aotearoa COVID Action group has developed an 11 point COVID plan10 that includes practical steps to improve protection against the virus that would be of benefit to people with ME/CFS, such as mask mandates in high risk facilities, clean indoor air policies, increasing access to treatment and patient-led long COVID services. We support and encourage the implementation of these strategies.

Question 2: Moving forward – what lessons should we learn from your experiences so we can be as prepared as possible for a future pandemic?

Individuals with ME/CFS are often marginalised and their needs inadequately addressed in public health planning. Research highlights a disparity between government funding and level of disease burden for ME/CFS, in comparison to other chronic illnesses.11 There is a pressing need for comprehensive planning around post-viral illness for a future pandemic. 

Post-viral illness is not new.

Research has shown that viral infections can trigger the onset of ME/CFS12 13 and it is likely that the current pandemic will lead to an increase in cases in the years to come. Post-viral illness is not a new condition and we need to look at the past to plan for the future. Previous pandemics, such as the Spanish flu of 1918, the UK Royal Free Hospital viral outbreak of 1955, Incline village/Lake Tahoe, Nevada, USA mystery virus, and the Tapanui flu in New Zealand in 1984,14 have left a lasting legacy beyond the immediate impact of the viral outbreak. Studies and historical records indicate a pattern of post-viral illness among survivors.15

It is essential that public health authorities develop strategies for early identification, diagnosis, and management of post-viral illness, including appropriate support and resources for individuals with ME/CFS. International best practice guidelines recommend early diagnosis and intervention with a multidisciplinary team of healthcare professionals in order to improve outcomes.16 17 18

If best practice guidelines are not followed appropriately there is great potential for harm because patients with post-viral illness who ignore or push through their symptoms can worsen their condition, often becoming bedridden.19

The World ME Alliance has issued a statement in response to the United Nations General Assembly, which adopted a Political Declaration on Pandemic Prevention, Preparedness and Response, calling for future pandemic planning to address infection-associated chronic conditions.20 Their statement highlights the urgency of the situation, according to recent research: “Globally, more than 65 million people are now living with long COVID, of whom 50% meet the criteria for a diagnosis of ME/CFS.”21

In New Zealand this is estimated conservatively to be around 400,000 people who will experience long COVID.22

Improving post-infectious disease management now will enable better preparedness for future outbreak events. This includes ensuring that information released by the health authority on ME/CFS and long COVID follow best practice. ANZMES recently sent best practice guidelines to Te Whatu Ora/Health NZ, the medical associations, councils, and schools and believe this document needs to be adopted immediately. 

Funding for research and support services needs to be allocated by the government to address the demand occurring now. With these established practices and services in place and readily available in primary and secondary care, there will be no need to rush to set things up during the next outbreak, and new infections can be treated through the existing model. Appropriate tracking of prevalence and outcomes should be a routine part of this process.

We submit the following recommendations for consideration:

  • Inclusion of ME/CFS and long COVID as a priority population in public health planning and response efforts with tailored guidance and support for prevention and protection, with a focus on early intervention, education around the impact of ignoring best practice, and support for affected individuals.
  • Investment in research to better understand the relationship between viral infections, including COVID-19, and the onset of ME/CFS, as well as the development of effective treatments.
  • Investment in specific vaccine immune response research in people with ME/CFS and long COVID as a priority so that evidence-based advice can be provided. This would include using less reactogenic protein vaccines such as XBB Novavax over mRNA vaccines.
  • Make XBB Novavax or protein vaccines available for vulnerable populations such as ME/CFS and long COVID.
  • Ensure transparency around reported harms.
  • Increase access to funding and support for people with post-viral illness by reclassifying ME/CFS as a disability and removing eligibility barriers to financial aid.
  • ANZMES is utilised in an advisory capacity by all health and related agencies, and the best practice guidance is adopted by all.
  • Establishment of a post-viral or post-infectious centre of excellence, which includes:
    1. Medical arm to assess and triage patients via telehealth.
    2. Educational arm to provide the latest evidence-based information for health professionals, benefit assessors, insurers, employers, educational institutes.
    3. Support arm to assist with financial, employers, educational adaptations.
    4. Research arm to develop more effective management/treatment/cure that is prepared for immediate action, based on meaningful longitudinal studies – saving resources by avoiding unnecessary repetition of existing ME/CFS studies with long COVID cohorts.

ANZMES, as the National Advisory, already provides education, research funding and generation, and represents the national and global voice for people with ME (and supports those with long COVID and associated conditions) and is well positioned to take on the role of the Centre of Excellence with the appropriate infrastructure development through governmental funding and support.

By addressing the unique challenges and vulnerabilities faced by people with ME/CFS, we can ensure a more inclusive and effective public health response to future pandemics. We would welcome an opportunity to be involved in an advisory panel, to offer the wisdom and best practice requirements for this pandemic response and future viral outbreaks.

Who are ANZMES?

We are the National Advisory on ME in Aotearoa/New Zealand. With four decades of knowledge and experience, we are the trusted leaders in ME education, representation, and research. Our expertise comes from a reputable medical team of advisors, including 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 executive committee comprises experts in their respective fields for governance, policy, leadership, representation, and education.

Always a trail-blazer, it was the first ME charity of its kind in the world, established in 1980, as ANZMES, to provide support, information dissemination, and representation, achieving past outcomes through dedication, passion, time, and knowledge of lived experience. Today, the organisation leads as a RNZCGP Continuing Medical Education (CME) Registered Provider, proud funder of vital research, and steward of the community voice.

We continue to disseminate evidence-based information nationally, and represent the ME voice globally as a founding member of the World ME Alliance through advocacy and leadership. ANZMES latest education programme – Know M.E. – is a video podcast and news series featuring up-to-date, evidence based research and information on ME and Post COVID Conditions.

References:

  1. Davis, H.E., McCorkell, L., Vogel, J.M. et al. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol 21, 133–146 (2023). https://doi.org/10.1038/s41579-022-00846-2
    ↩︎
  2. Hvidberg, et al (2015). The health related quality of life for patients with myalgic encephalomyelitis / chronic fatigue syndrome. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421
    ↩︎
  3. Walker, MOM, Peppercorn K, Kleffmann T, Edgar CD, Tate WP (2023) An understanding of the immune dysfunction in susceptible people who develop post viral fatigue syndromes Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID Medical Research Archives (accepted June 2nd). DOI:https://doi.org/10.18103/mra.v11i7.1.4083
    ↩︎
  4. ME Action. (2021). Report on the impact of Covid-19 on ME. https://www.meaction.net/2021/04/29/covid-19-has-worsened-our-me-report-survey-respondents/
    ↩︎
  5. Hereth B, Tubig P, Sorrels A, Muldoon A, Hills K, Evans N G et al. Long covid and disability: a brave new world BMJ 2022; 378 :e069868 doi:10.1136/bmj-2021-069868
    ↩︎
  6. Mulu Woldegiorgis, Gemma Cadby, Sera Ngeh, Rosemary Korda, Paul Armstrong, Jelena Maticevic, Paul Knight, Andrew Jardine, Lauren Bloomfield, Paul Effler. (2022).Long COVID in a highly vaccinated population infected during a SARS-CoV-2 Omicron wave – Australia. medRxiv 2023.08.06.23293706; doi: https://doi.org/10.1101/2023.08.06.23293706
    ↩︎
  7. K. Bach. (2022). New data shows long Covid is keeping as many as 4 million people out of work. https://www.brookings.edu/articles/new-data-shows-long-covid-is-keeping-as-many-as-4-million-people-out-of-work/
    ↩︎
  8. Health New Zealand/Te Whatu Ora. (2024). COVID-19 Current Cases. https://www.tewhatuora.govt.nz/our-health-system/data-and-statistics/covid-19-data/covid-19-current-cases/
    ↩︎
  9. Aotearoa Covid Action. (2024). https://covidaction.nz/en/
    ↩︎
  10. Aotearoa Covid Action. (2024). Aotearoa Covid Action’s 11-point Covid plan.
    https://covidaction.nz/en/noneofusaresafeuntilallofusaresafe-tenstepstocovidsafety
    ↩︎
  11.  Mirin, Arthur A., Dimmock, Mary E., and Jason, Leonard A. ‘Research Update: The Relation Between ME/CFS Disease Burden and Research Funding in the USA’. 1 Jan. 2020 : 277 – 282. ↩︎
  12. Tate WP, Walker MOM, Peppercorn K, Blair ALH, Edgar CD. Towards a Better Understanding of the Complexities of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID. Int J Mol Sci. 2023 Mar 7;24(6):5124. doi: 10.3390/ijms24065124. PMID: 36982194; PMCID: PMC10048882.
    ↩︎
  13. Cameron B., Flamand L., Juwana H., Middeldorp J., Naing Z., Rawlinson W., Ablashi D., Lloyd A. Serological and virological investigation of the role of the herpesviruses EBV, CMV and HHV-6 in post-infective fatigue syndrome. J. Med. Virol. 2010;82:1684–1688. doi: 10.1002/jmv.21873.
    ↩︎
  14. Simpson LO. Myalgic encephalomyelitis. J R Soc Med. 1991 Oct;84(10):633. PMID: 1744860; PMCID: PMC1295578.
    ↩︎
  15.  George Dehner, Howard Phillips, In a Time of Plague: Memories of the ‘Spanish’ Flu Epidemic of 1918 in South Africa, Social History of Medicine, Volume 33, Issue 1, February 2020, Pages 343–344, https://doi.org/10.1093/shm/hkz093
    ↩︎
  16. National Institute for Health and Care Excellence(NICE). (2021). ‘Overview | Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis and Management | Guidance | NICE’. NICE.
    https://www.nice.org.uk/guidance/ng206
    ↩︎
  17. Centers for Disease Control and Prevention. (2022). Information for Healthcare Providers. Understanding History of Case Definitions and Criteria. https://www.cdc.gov/me-cfs/healthcare-providers/case-definitions-criteria.html
    ↩︎
  18. Mayo Clinical Proceedings (2021). Consensus Recommendations for ME/CFS: Essentials of Diagnosis and Management https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext
    ↩︎
  19. Strassheim, Victoria; Newton, Julia L.; Collins, Tracy (February 5, 2021). “Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis”. Healthcare. 9 (2): 168. doi:10.3390/healthcare9020168. ISSN 2227-9032. PMC 7914910. PMID 33562474.
    ↩︎
  20. World ME Alliance. 32 organizations call for future pandemic preparedness to address infection-associated chronic conditions. 2023. https://worldmealliance.org/2023/10/31-organizations-call-for-future-pandemic-preparedness-to-address-infection-associated-chronic-conditions/
    ↩︎
  21. Davis, H.E., McCorkell, L., Vogel, J.M. et al. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol 21, 133–146 (2023). https://doi.org/10.1038/s41579-022-00846-2
    ↩︎
  22. Russell L, Jeffreys M, Cumming J, Churchward M, Ashby W, Asiasiga L, Barnao E, Bell R, Cormack D, Crossan J, Evans H, Glossop D, Hickey H, Hutubessy R, Ingham T, Irurzun Lopez M, Jones B, Kamau L, Kokaua J, McDonald J, McFarland-Tautau M, McKenzie F, Noldan B, O’Loughlin C, Pahau I, Pledger M, Samu T, Smiler K, Tusani T, Uia T, Ulu J, Vaka S, Veukiso-Ulugia A, Wong C, Ellison Loschmann L (2022). Ngā Kawekawe o Mate Korona | Impacts of COVID-19 in Aotearoa. Wellington:Te Hikuwai Rangahau Hauora | Health Services Research Centre, Te Herenga Waka-Victoria University of Wellington.
    ↩︎

NICE Revisions backed by evidence

by

In this article:

The NICE Revisions Explained

The  National Institute for Health and Care Excellence (NICE) guidelines are the principle clinical guidance for the UK, and are utilised by many other countries, including Aotearoa/New Zealand. In October 2021, the NICE released revised guidelines for the diagnosis, treatment, and management of Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS).1

The publication of these guidelines represents a significant opportunity to correct historic misinformation about ME/CFS, and to ensure educators and clinicians have current, methodologically-sound evidence to guide their understanding of pathophysiology, assessment, and management.  

Revision of the ME/CFS NICE guidelines occurred over several years (2017-2021) and followed the standard robust NICE review processes. This included evaluation of the research evidence using the GRADE framework, a widely adopted system for formulating clinical practice recommendations.  Analysis of the evaluation was then conducted by a panel of clinicians and lay persons, followed by review by the NICE guideline committee. The Committee was chaired by Clinical advisor and paediatrician Dr. Peter Barry and Vice Chair Baroness Finlay, Consultant in Palliative Medicine, Clinical Lead for Palliative Care for Wales.

The major changes in the NICE guidelines for ME/CFS are: 

  • Acknowledgement of the cardinal diagnostic symptom of Post Exertional Malaise (PEM), a worsening of symptoms after activity. 
  • The removal of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET)  as recommended treatment 
  • The recommendation that Lightning Process should NOT be used to treat ME/CFS 
  • Treatment focus is on symptom management.
summary of recommendation available on NICE website

The historical use of Cognitive Behavioural therapy (CBT) and graded exercise therapy (GET) as a treatment for ME/CFS stemmed from an inaccurate formulation that psychological factors are key in the causation and/or maintenance of symptoms. The risk to people with ME/CFS was that cognitive behavioural techniques urged people to view their symptoms as exaggerated illness behaviours and to counter this by engaging in increasing levels of activity/exercise. Exceeding the energy envelope risks Post Exertional Malaise (PEM) and can result in a prolonged or permanent worsening of the condition.

As evidence of the pathophysiology underlying ME/CFS has mounted, and the potential for harm of CBT and GET has become clear, CBT/GET has been abandoned as a treatment strategy in the USA and many other countries. Major guidance publications have either dropped all reference to these and related therapies, or cautioned against the use of them (e.g. CDC, IoM/NAM).
The 2021 publication of the NICE guidelines likewise clarified that there is insufficient evidence for the use of CBT and GET and removed the recommendation.
The NICE review process also discredited the validity of research included in the 2007 NICE guidelines that claimed these strategies were safe and effective. Evaluations of the quality of evidence used in 2007 to develop these claims, determined that across 172 individual CBT outcomes, as examined across multiple studies, all evidence cited for CBT was found to be of “low” or “very low” methodological quality. Similarly across 64 individual GET outcomes, all evidence for GET was of “low” or “very low” quality. 

The NICE committee took the scrutiny of evidence for psychological therapies a step further by singling out the Lightning Process for additional evaluation. This is a programme, developed by a UK osteopath, that promotes a rudimentary neurolinguistic programming technique as curative of a range of conditions, primarily ME/CFS, and more recently long Covid. The concerns around this programme stem from the formulation that ME/CFS symptoms are a learned response to stress and that alternate responses need to be rewired.  This can result in people engaging in actions that precipitate Post Exertional Malaise thus worsening their condition. The NICE Committee found available evidence for the Lightning Process to be of “very low” quality upon review and now recommends that the Lightning Process not be offered to people with ME/CFS. Furthermore, the British Standard Advertising Authority took legal action against the Lightning Process owners, citing false advertising due to unsubstantiated claims. This action was upheld.

In spite of a lack of evidence for CBT/GET and other therapies such as Lightning Process, there are influential academic and clinical groups in the UK and some European countries, who continue to promote and research psychological interpretations of ME/CFS. In New Zealand, in the face of a proliferation of evidence showing a pathophysiological basis for symptoms, and growing numbers of people being diagnosed with ME/CFS following PASC (long covid), some clinicians in New Zealand remain unaware of this evidence and potential harm, and continue to promote psychological therapies as curative. This is in spite of The Ministry of Health’s recognition of  ME/CFS as biomedical in 2002, and removal of CBT/GET in the clinical advice in the regional Health Pathways in New Zealand from 2019.

In December 2022, the Ministry of Health supported the conclusions of the guidance for ME/CFS published by NICE (2021) saying ‘that ME/CFS is a serious and complex medical condition/disease with varying severity rather than a mental health condition and that there is not a primary psychological basis underlying its development and/or maintenance.’

The NICE Guidelines (2021) now include best practice recommendations for treatment focussing on symptom management and emphasise the importance of energy management techniques, such as pacing, that are proven to be effective in preventing or minimising Post Exertional Malaise (PEM) – the diagnostic characteristic of ME.

“The keys to pacing are knowing when to stop and rest by listening to and understanding one’s own body, taking a flexible approach and staying within one’s limits; different people use different techniques to do this.” – NICE Guidelines 

Final words

ME/CFS is a complex, debilitating condition and best practice care involves a person-centred approach where symptom management is the key to controlling the fluctuating relapse and remittance that occurs. Evidence-based strategies that are shown to be effective are pacing and energy management, and symptom management strategies including a care and support plan, good nutrition, specialist physiotherapy, rest, sleep and pain management.

ANZMES considers the 2021 NICE guidelines to be comprehensive, evidence-based, and backed by a rigorous review process.  We encourage all healthcare professionals, medical bodies, medical schools, and ministry staff (in particular MoH, MSD) in New Zealand to update their understanding of ME/CFS and to become acquainted with the 2021 NICE guidelines.  

It’s one of the biggest challenges in clinical practice in medicine or psychology to try to work with somebody for whom you have no answers, you have no magic bullets. So it is disappointing but one of the reasons we have maybe a shortage of evidence-based treatments for this condition is because of the emphasis on cognitive behavioural therapy and GET … the research is very behind on where it would be if there was actually a level playing field to begin with.
The unfair emphasis on these treatments has created this deficit of knowledge. You have to manage the symptoms of this condition … but to use that as some kind of rationale for retaining therapies that we know are ineffective, doesn’t follow logically.
Professor Brian Hughes, BA, EdM, PhD, Psychology Professor NUI Galway.2

If you are a medical professional or member of a medical body or ministry staff member who would like to know more about ME/CFS, including the up-to-date scientific research, and evidence-based treatment options, please contact ANZMES.

Download the pdf of the NICE Guidelines for ME/CFS.

Or visit their website:

https://www.nice.org.uk/guidance/ng206

World ME Alliance responds to opinion piece

In July 2023 an article titled “Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis” was published in the Journal of Neurology and Neurosurgery and Psychiatry (JNNP).

The World ME Alliance provided a rapid response to the article which the JNNP chose not to publish.

The World ME Alliance, of which ANZMES is a founding member, is a global collective of national organisations with 27 member organisations (24 at the time of the rapid response).

The full response can be read on the World ME Alliance website.

JNNP publishes detailed NICE response article

On March 1st, 2024, the Journal of Neurology and Neurosurgery and Psychiatry (JNNP) published a full article from authors of the NICE guideline on #MECFS, clearly laying out how this guideline is a rigorous and accurate assessment of current knowledge. Through this, the authors demonstrate the reliability and importance of the recommendations on care for people with ME.

Read the full article here: https://jnnp.bmj.com/content/early/2024/02/28/jnnp-2023-332731

1https://www.nice.org.uk/guidance/ng206/resources/myalgic-encephalomyelitis-or-encephalopathychronic-fatigue-syndrome-diagnosis-and-management-pdf-66143718094021
2Professor Brian Hughes interview minute 19.09: https://view.pagetiger.com/me-fibro-webinars/1

ANZMES: A #GlobalVoiceForME on World ME Day 2024

by

As we approach World ME Day on May 12th, 2024, ANZMES joins the global community in shedding light on the pressing issues surrounding Myalgic Encephalomyelitis (ME). This significant day coincides with the 55th anniversary since the World Health Organization (WHO) officially acknowledged ME in their International Classification of Diseases, underscoring the critical need to address this global health crisis.

In recent times, the landscape of ME has undergone a transformation, with COVID-19 emerging as the most common trigger for this chronic illness. The intersection of these two health challenges has resulted in a significant increase in the number of people affected by ME. Today, we estimate that at least 55 million individuals worldwide are living with the debilitating effects of this condition. Amidst these escalating numbers, ANZMES proudly stands alongside World ME Alliance members across the globe, collectively amplifying support for initiatives that seek to address the multifaceted impact of ME on individuals and communities alike.

No Cure, No Universal Treatment

One of the harsh realities we face is that there is currently no cure for ME, nor universally effective treatments. Individuals grappling with ME often endure not only the physical toll of the illness but also the stigmas that accompany it. It is imperative that we, as a global community, come together to address these gaps in understanding, research and treatment.

Building a #GlobalVoiceForME 

This World ME Day, ANZMES will be joining the call upon individuals, organizations, and countries to become a #GlobalVoiceForME. As a collective, we increase our power. By uniting our voices, we can influence the trajectory of ME research, treatment, and support.

ME knows no borders, and neither should our efforts to combat it. It is crucial that countries around the world work collaboratively to address this crisis. By fostering international cooperation, sharing research findings, and building recognition in every nation, we can pave the way to mitigate the devastating effects of ME.

Taking action for World ME Day 2024: In the coming months, ANZMES and the World ME Alliance will be announcing actions you can take to create change on May 12th, 2024. A big focus will be building relationships with health ministries of different nations, as they have the power to advocate with the World Health Organization. Your involvement will be vital to this effort, so keep your eyes peeled for more info coming soon.

Alongside this, we are developing tools for you to use, like our much-loved custom poster maker, a new film, graphics, posters, and more. We can’t wait to share these with you!

In the meantime:

  • Spread the Word: Use your social media platforms to share information about ME. Let your friends, family, and followers know that World ME Day 2024 is coming on May 12th, and that you’ll be asking them to join as a #GlobalVoiceForME!
  • Educate Yourself: Knowledge is a powerful tool. Learn about ME in your country through  ANZMES or reach out to others online to become part of the global ME community. Your voice matters, and you can contribute to breaking down misconceptions and stigmas surrounding the illness.

As we prepare for World ME Day 2024, we hope you will stand united with ourselves and the World ME Alliance, raising our voices to be heard around the globe. By growing the #GlobalVoiceForME, we can accelerate change, fostering a future where those affected by Myalgic Encephalomyelitis find hope, understanding, and ultimately, a cure. Together, let’s turn awareness into action and transform the landscape for individuals living with ME.

National Advisory on ME releases Best Practice Guidance with clinician and researcher support.

by

The Aotearoa/New Zealand National Advisory on ME (ANZMES) has released best practice guidance for the diagnosis and management of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. There is a call for national guidelines to be developed in consultation with ANZMES, to ensure only the latest evidence-based research and data is adopted and used by the health profession. New Zealand-based and international reputable ME/CFS and long COVID researchers and clinicians have signed their names in support of this newly released guidance. The document has been sent to the relevant health associations, medical bodies, and medical schools. The document can be seen below:

The words with best practice written with chalk and images of light bulbs one is yellow the rest are white

Executive Summary

Introduction

As the National Advisory on Myalgic Encephalomyelitis (ME), we present the latest updates to best practice international guidelines for immediate use to standardise care in New Zealand.  This document highlights the critical importance of adhering to current, evidence-based recommendations, incorporating expert consensus for the diagnosis and management of ME while moving away from practices that have been proven to be harmful or disproven by contemporary research.

Overview

Advances in research have evolved our understanding of ME, refining diagnosis criteria and symptom management. Research now shows clearly that the basis of ME is biomedical rather than psychological, with multi-systemic dysfunction driving pathogenesis and symptom progression. Guidelines for clinical practice reflect this understanding.

Key practice points:

  • The  Institute of Medicine (2015) Criteria are the preferred diagnostic criteria for ME.
  • The Canadian Consensus Criteria are the preferred criteria in research for ME.
  • International guidelines from institutions like the Mayo Clinical Proceedings, Centers for Disease Control and Prevention (CDC), and National Institute of Health and Care Excellence (NICE) provide an up-to-date framework for healthcare professionals to navigate the complexities of symptom management in ME.
  • International guidelines uniformly advocate a multidisciplinary approach,  emphasising the identification and management of the cardinal symptom – Post-Exertional Malaise (PEM).
  • Symptom management is the focus of treatment with emphasis on pacing – a free energy management technique used to avoid PEM. Ignoring these guidelines can worsen a patient’s condition.
  • Robust review of evidence has led to the removal of three previously recommended treatments from international guidelines – Cognitive Behavioural Therapy (CBT), Graded Exercise Therapy (GET), Lightning Process. Continuing to perpetuate the prescription of these treatments may cause harm.

International best practice guidelines play a crucial role in standardising care and improving patient outcomes. We are committed to supporting best practice care for people with ME and we offer resources, training and access to up-to-date guidelines that can assist in aligning NZ medical practice with the latest robust, evidence-based recommendations.

Best Practice Guidelines 

Presented below are the most current evidence-based, reputable international guidelines for the diagnosis and management of ME (also known as Chronic Fatigue Syndrome (CFS) and long COVID.

The landscape of healthcare is constantly evolving, with new research findings and innovative approaches emerging regularly. It is imperative that healthcare professionals stay informed about the latest evidence-based practices and incorporate them into daily routines, therefore enhancing the quality of care provided and ensuring the safety and well-being of patients.

There are longstanding practices that have been widely accepted in the past but have since been debunked or found potentially harmful. It is crucial that we collectively reevaluate and abandon these practices when necessary to prevent harm.

We would like to see national guidelines for New Zealand that follow international guidelines in both primary and secondary care. Standardising care with best practice guidelines eliminates the current postcode lottery for care occurring in our country, and ensures that every individual with ME/CFS, long COVID, and their common comorbidities, is dealt with appropriately, using the latest evidence-based information.

ANZMES has already produced two one-page documents covering pertinent information needed in primary care for diagnosis and management of ME/CFS and long COVID, and will produce guidelines for secondary care in due course.

The appropriate international guidelines for the diagnosis and management of ME are:

  • The Institute of Medicine 20151
  • Canadian Consensus Criteria (CCC)/International Consensus Criteria (ICC)2
  • Mayo Clinic Proceedings3
  • Centre for Disease Control and Prevention (CDC)4
  • National Institute for Health and Care Excellence (NICE)5

Why follow these Guidelines over others? 

Diagnosis

Definitions and diagnosis of ME have advanced as clinical and biomedical understanding of the condition has increased and this is reflected in these guidelines. Over 20 different case definitions have been published with many containing inconsistencies between research and clinical criteria.  

In the past ME was misunderstood and physicians often labelled it as a psychological illness or a form of stress-induced fatigue. Excessively inclusive and inconsistent definitions and criteria initially created misconceptions about ME and led to negative experiences for people seeking diagnosis. For example, in 1991, a group of predominantly psychiatrists published criteria designed for research. This criteria was used for the PACE trial. They recognised a subgroup of people with chronic fatigue present with symptoms after infection. However, they did not exclude those with depression and anxiety, and factored this into the symptom definitions as “mood disturbance.” This has contributed to research in which participants may have had a mental health disorder causing fatigue, rather than ME.6 

As biomedical understanding has increased the diagnostic criteria have evolved,  in particular, to now recognise the multi-systemic nature of the condition and the impairment of the energy and recovery systems that result in Post Exertional Malaise (PEM).

The Institute of Medicine Criteria (IoM) and the International Consensus Criteria (ICC) are currently the most robust diagnostic criteria for clinicians. These set out three primary symptoms that must be present, for a minimum of six months to diagnose ME – PEM, unrefreshing sleep, and unexplained fatigue. At least one other additional symptom must be present – either orthostatic intolerance or cognitive impairment.  Functional impairment must be substantial, with ICC requiring 50% decrease in activity. Case definitions and criteria that do not include PEM, such as Fukuda 19947 are therefore now less commonly used in practice.

The International Consensus Criteria (ICC) was developed as a diagnostic tool for clinicians based on the Canadian Consensus Criteria (CCC). The CCC is considered the strictest criteria and is primarily used in research, superseding Fukuda.

When assessing a patient with a multitude of symptoms the IoM* criteria provide clarity in this process by offering a concise set of required symptoms. The IoM criteria published most recently (2015) are now widely considered to be the best tool for use in clinical settings as they offer a clearer definition than previous guidelines and emphasise the importance of the patient’s subjective experience and the need for thorough case taking and examination. The IoM (2015) can be used for both adults and children.

*IoM is now renamed National Academy of Medicine (NAM).

Symptom Management

Current best practice guidelines from robust unbiased reviews emphasise that all treatment needs to be offered in a way that avoids PEM and recommends that energy expenditure is managed within individual limits. Pacing for people with PEM has been shown to improve quality of life, fatigue severity, and physical functioning.8,9

What is PEM?

Post-Exertional Malaise is the worsening of ME or long COVID symptoms after physical or mental effort and this can happen one or two days after even minor activity.  PEM is also referred to as Post-Exertional Symptom Exacerbation (PESE) and Post-Exertional Neuroimmune Exhaustion (PENE). People with ME describe PEM as “crashing” or “collapsing” with relapse of symptoms.  It is helpful to understand that normally if a person is fatigued after exertion they will rest and then energy will be restored, in ME this physical recovery process is dysfunctional. Studies have identified differences in gene expression, blood volume and oxygen consumption, and mitochondrial function as some potential drivers for this dysfunction. Dysfunction of the regulatory control network within and between the nervous systems is also believed to contribute to the pathophysiology of PEM, which can impact all body systems.10,11 The most common symptoms associated with a PEM flare include body aches, pain, weakness, fatigue, cognitive dysfunction, and orthostatic intolerance.

What is Pacing?

Pacing is an energy management technique that can be used to help with symptoms related to PEM. Patients are encouraged to stay within their energy envelopes and gradually increase their activity levels over time if possible, while being mindful of their limits and symptoms.  The International Consensus Primer12 highlights the importance of patients learning to become aware of their bodies’ early warning signs that they are beginning to push themselves outside their limits. Useful tools include heart rate monitors, step counters, and temperature monitoring. For example, changes in heart rate (above anaerobic threshold) and reduction in body temperature can be early signals of overexertion.

There are three treatments that are not recommended for ME by international best practice guidelines or have been removed from said guidelines (Mayo Clinical Proceedings, and CDC):

  • Cognitive Behavioural Therapy (CBT)
  • Graded Exercise Therapy
  • Lightning Process 

Why is Cognitive Behavioural Therapy Contraindicated as Treatment for ME?

Cognitive Behavioural Therapy (CBT) is not recommended as a treatment for ME by leading experts and organisations (CDC, Mayo Clinic) and is specifically contraindicated in international guidelines. These strategies do not recognise or address the underlying pathophysiological issues.13

While psychological approaches can be supportive they are not evidenced as treatments of the condition.14 There is no evidence to show that CBT can “cure” the physiological and cognitive impairment symptoms of ME and research has been offered to the media in a misleading context, which has led to an exaggerated perception of effectiveness.15 Further independent review has found that “the arguments that are used to claim that NICE was wrong, in reality, highlight the absence of evidence for the safety and efficacy of CBT and GET and strengthen the decision by NICE to drop CBT and GET as curative treatments for ME/CFS.”16

“When you develop therapies based on this psychogenic cognitive-behaviour theory, these therapies do not work, which raises the question of whether the theory works.”
Professor Brian Hughes, BA, EdM, PhD, Psychology Professor NUI Galway

The Mental Health and Addiction division of Manatū Hauora / Ministry of Health clearly stipulates that ME is a complex medical condition rather than a mental health condition (December 2022).

The NICE October 2021 guidelines (1.12.28) states that CBT may be useful to help people with ME/CFS “manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness” but that clinicians must explain the principles of CBT, including any potential benefits and risk, that it ‘may help’ but ‘it is not curative.’ This paragraph was added on 20/10/2025.

The pathophysiology of ME and Post Exertional Malaise (PEM)

The evidence for the pathophysiology underpinning ME,17 the harm that can result from PEM18 and the value of pacing as a primary strategy has proliferated in the past decade. Speculative theories of ME being associated with deconditioning, exercise avoidance, a somatic perception disorder, or unresolved trauma have been discredited.19,20 This shift from speculation to evidence is now reflected in numerous examples of peer-reviewed research, and in all reputable international guidance. 

Research in New Zealand, under Emeritus Professor Warren Tate and clinician Dr Rosamund Vallings (MNZM) offers insight into the biomedical basis identifying molecular changes in ME patients, including dysfunction of the autonomic nervous system, immune regulation, energy production and lowered general metabolism.21 Dysfunction of the regulatory control network within and between the nervous systems is also believed to contribute to the pathophysiology of PEM, which can impact all body systems.22,23 Further research suggests that PEM may be caused by an overactive immune response, leading to increased inflammation in the body. In a study published in the Journal of Translational Medicine, researchers found that ME patients with PEM and higher levels of pro-inflammatory cytokines in their blood, pointing to a potential immunological pathway.24 

In December 2022, the Ministry of Health supported the conclusions of the guidance for ME published by NICE (2021) saying ‘that ME/CFS is a serious and complex medical condition/disease with varying severity rather than a mental health condition and that there is not a primary psychological basis underlying its development and/or maintenance’.25

Why is Graded Exercise Therapy Contraindicated for ME?

Numerous reputable studies and guidelines including the IoM, NICE, Mayo Clinic and the CDC have removed Graded Exercise Therapy (GET) from treatment recommendations due to the potential that this strategy will elicit Post Exertional Malaise (PEM). This potential for harm extends to patients with Long COVID who experience Post Exertional Symptom Exacerbation (PESE), similar to PEM. 

Guidance that recommends CBT and GET has been withdrawn and replaced with pacing and aligned strategies:

  • The large 2011 PACE randomised trial26 which recommended GET and CBT has been robustly reviewed and discredited.27  Activities carried out as part of the PACE trial differ from what is considered “pacing.” Pacing is explained earlier in this document.
  • The Centers for Disease Control and Prevention removed CBT/GET from the treatment guidelines in 2017.28
  • Recommendation for CBT/GET originated from the 2007 NICE guidelines. However, these recommendations have now been withdrawn as they were based on nine (9) studies (4 CBT, 5 GET) each of which had significant methodological limitations. The 2021 NICE guidelines,29 DO NOT recommend CBT/GET and are based on 172 CBT and 64 GET study outcomes, which factored methodological limitations into the analysis. Arguments against the NICE review have been found to further highlight the lack of evidence of safety and efficacy for CBT and GET.30 Enclosed please find an explanation of the 2021 NICE review.
  • Consensus Recommendations31 published by Mayo Clinical Proceedings, in November 2021, recommended pacing as an individualised approach to energy conservation and management that can minimise the frequency, duration, and severity of PEM. In October 2023, Mayo Clinical Proceedings published a Concise Review for Clinicians for ME.32 This provides clear management advice stating that “Symptom-contingent pacing is recommended to all patients with ME/CFS.” 
  • The CDC and 2007 [and 2021] NICE guidelines cite pacing as an effective component in the treatment of patients with ME.
  • In 2019 and 2020, most Regional Health Pathways teams, in New Zealand, updated their clinical guidance for ME to reflect the IOM 2015 diagnostic criteria and the CDC’s recommendation to offer pacing rather than GET. 
  • Workwell foundation, a group of experts and researchers that work with fatigue-related illnesses, such as ME and Long COVID, oppose the use of GET for ME, explaining that GET “aimed at training the aerobic energy system, not only fails to improve function, but is detrimental to the health of patients and should not be recommended….Indications of metabolic dysfunction in ME/CFS suggest that limiting sustained activity whenever possible is a more reasonable therapeutic approach.” The Workwell Foundation’s  full argument and evidence can be found here in their Letter of Opposition to the use of GET for ME.

This also has implications for people with Long COVID as practitioners follow ME management for this condition, due to their similarities. Recent research comparing long COVID and ME/CFS found similarities that included the experience of low and medium physical and cognitive exertion to trigger PEM, symptoms of fatigue, pain, immune reaction, neurologic, orthostatic intolerance, and gastrointestinal symptoms during PEM, rest to recover from PEM, and benefits from pacing to prevent PEM.33 

The current Ministry of Health NZ Clinical Rehabilitation Guideline for People with Long COVID is aligned with ME/CFS management and states that for PEM or PESE: 

“graded exercise therapy (GET: planned, regular exercise with incremental increases in frequency and/or intensity, duration and type with a goal to increase fitness) is not recommended for these people, because it can cause an exacerbation of symptoms. Symptom-led pacing is advocated for, this includes prioritising, planning, and use of an activity diary.”34

Graded exercise therapy of planned regular exercise, with incremental increases usually utilises heart rate values, however individuals with ME often have chronotropic intolerance and therefore cannot achieve the same values to those individuals without this condition.35

Why is the Lightning Process not recommended for ME?

Best practice guidelines specifically state that the Lightning Process (LP) is not recommended as a treatment for ME, due to a lack of quality evidence and potential harms. 

Proponents of LP quote a single published study of the Lightning Process known as the SMILE trial. This study has been widely criticised for ‘outcome swapping’ as the primary outcome measure was changed from school attendance to scores on a self-report questionnaire. Given that LP overtly encourages patients to only report positive outcomes and improvement in their ability to control symptoms this is likely to lead to response bias. In July 2019, after an investigation by the Archives of Disease in Childhood, a lengthy and detailed editorial correction to the SMILE trial was published.36

The study corrections include, acknowledgement from the authors that the study was not fully ICMJE compliant, with their account of timeline and chronological order and changes being made to the primary outcomes of the study. 

While anecdotal stories indicate that these programmes do improve functionality for some, there are also reports that these programmes cause harm for others. Some people report severe, long term increases in symptoms following participation in these programmes when they have been encouraged to exceed their safe level of exertion. 

The Lightning Process is not cost-effective for many people with ME/CFS who are on low income/government benefits. Pacing, which is a self-management technique, is free, and can be carried out in one’s home. The only cost is if an individual chooses to purchase a wearable to monitor heart rate etc.

The World ME Alliance agrees with the international guidelines and published a position paper stating that: “The World ME Alliance and its members do not endorse the Lightning Process for people with Myalgic Encephalomyelitis (ME), sometimes called Chronic Fatigue Syndrome (CFS).”37

Given the lack of evidence for Lightning Process and aligned programmes, the claims of cure, the lack of informed consent provided to patients around the risk of PEM, and the potential for negative outcomes, it should not be promoted to, or recommended by, health professionals. 

Lived experience

The inclusion of consumers’ lived experiences is essential to the development and evaluation of health service delivery and to making quality improvements in the health system. The Health Quality and Safety Commission (HQSC) identifies that lived experience stories can help highlight where and how services could be improved to meet peoples’ needs. 

Narratives from members of the NZ ME/CFS community in the form of Case Studies have been obtained through the regional ME/CFS organisations to illustrate examples of harm that have occurred through misinformation and treatment recommendations for GET or the Lightning Process. They have not been included in this document as they are not peer-reviewed or published case studies, however these are available upon request.

Potential impact on the health of the community

Continuing to perpetuate these outdated recommendations may lead to harmful practice and teach new health practitioners to continue this. Inconsistencies between New Zealand medical practice teachings and international standards may also lead to confusion for new and emerging practitioners. 

There is great potential for harm because patients with ME who ignore or push through their symptoms can worsen their condition, often becoming bedridden.38 

Doctors with M.E state “Discriminatory practice and standards in research, clinical knowledge, and safety which would not be tolerated in any other disease areas have become normalised in the field of ME/CFS. However such practice is unlawful, harms patients, and generates risk.”39

As any good researcher or clinician should know, basing a theory or treatment regime, on one single study, is not good practice. Especially if the single study is known to be flawed and unreplicated. Studies must have sound methodology, high validity and reliability, and outcomes must be replicable. Even Randomised Control Trials (considered the most robust) can have flaws in methodology that affect outcomes, as demonstrated by the SMILE trial. It is imperative that health professionals and medical associations and schools use the growing body of research and knowledge to support its resources, take note of meta analyses and robust literature reviews, and only publish information that is supported by the evidence.

Using outdated and flawed studies for the basis of treatment programmes for healthcare in Aotearoa/New Zealand will undermine the reputation and authority of New Zealand medical professionals within the eyes of the international medical, clinician, and research communities. It makes it harder for New Zealand health professionals to be taken seriously on the international stage, if the country’s health policies and practices reflect outdated opinions and flawed studies.

The medical profession has a duty to uphold a standard of care that follows the Hippocratic oath of “first, do no harm” and it is vital that all publications produced by health professionals follow these standards, and those that are discredited, harmful, or outdated are removed from circulation. 

We welcome the opportunity to work with you to ensure that any publications disseminated by health professionals or associations, follow the latest reputable research and guidelines. Our team of world-renowned experts are at the forefront of ME/CFS research and clinical practice and as the National Advisory on ME, ANZMES is fully equipped to provide the resources necessary to ensure that only the appropriate information is made available nationwide. Please utilise our expertise, on a subject that we spend 100% of our time researching, analysing, representing, and educating on, to ensure that best practice guidelines are the ONLY guidelines released by any Aotearoa/New Zealand based medical entity or representative.

We look forward to your positive response.

Yours sincerely

Fiona Charlton

President, ANZMES

Organisations in support of this letter:

M.E. Awareness NZ

Complex Chronic Illness Support

ME Support – NZ

MECFS Canterbury

MECFS MEISS (Otago and Southland)

Rest Assured Respite Trust

World ME Alliance

Emerge Australia

The ME Association (MEA)

Solve M.E.

Clinicians and Researchers in support of this letter:

Aotearoa/New Zealand

Emeritus Professor Warren Tate, University of Otago

Dr. Rosamund Vallings, MNZM

Dr. Anna Brooks, University of Auckland

Dr. Sarah Dalziel

Dr. Cathy Stephenson

Dr. Ken Jolly

Dr. Judijke Scheffer

Dr. Lynette Hodges, Massey University

Assoc. Professor Mona Jeffreys, Victoria University

International

Professor Sonya Marshall-Gradisnik, NCNED Professor

Dr. Charles Shepherd, MEA

Professor Leonard Jason, de Paul University

Professor Maureen Hanson, Cornell


References

1 Institute of Medicine of the National Academies. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.2015. www.nap.edu/read/19012

2 Carruthers BM, van de Sande MI, De Meirleir KL, Klimas NG, Broderick G, Mitchell, et al. Myalgic Encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine. 2011 doi: 10.1111/j.1365-2796.2011.02428.x. (published online on 20 July 2011)

3 Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. 2023. Mayo Clinic Proceedings. https://doi.org/10.1016/j.mayocp.2023.07.032

4 Centers for Disease Control and Prevention. (2022). Information for Healthcare Providers. Understanding History of Case Definitions and Criteria. www.cdc.gov/me-cfs/healthcare-providers/case-definitions-criteria.html

5 National Institute for Health and Care Excellence (NICE). (2021). ‘Overview | Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis and Management | Guidance | NICE’. NICE. https://www.nice.org.uk/guidance/ng206

6 Sharpe, M.C. et. al. (1990) A report – chronic fatigue syndrome: guidelines for research https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/pdf/jrsocmed00127-0072.pdf

7 Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. (1994). The chronic fatigue syndrome: A comprehensive approach to its definition and study. Annals of Internal Medicine. 1994;121:953–959.

8 Jason L, Benton M, Torres-Harding S, Muldowney K. The impact of energy modulation on physical functioning and fatigue severity among patients with ME/CFS. Patient Educ Couns. 2009;77(2):237-241. doi:10.1016/j.pec.2009.02.015  

9 Bested AC, Marshall LM. Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians. Rev Environ Health. 2015;30(4):223-249. doi:10.1515/reveh-2015-0026

10 Tirelli U, Chierichetti F, Tavio M, Simonelli C, Bianchin G, Zanco P, Ferlin G. Brain positron emission tomography (PET) in chronic fatigue syndrome: preliminary data. Amer J Med 1998; 105(3A): 54S-58S. [PMID: 9790483]

11 De Lange F, Kalkman J, et al. Gray matter volume reduction in the chronic fatigue syndrome. Neuroimage 2005; 26: 777-81. [PMID: 15955487]

12 Carruthers B. M. & van de Sande M. I. (2021). Myalgic Encephalomyelitis – Adult & Paediatric: International Consensus Primer for Medical Practitioners.

13  Twisk and Maes (2009) https://pubmed.ncbi.nlm.nih.gov/19855350/

14 Doctors with ME https://doctorswith.me/nice-gp-update/

15 ‘Are the New NICE Guidelines for ME/CFS at Odds with the Research Evidence?’, 14 August 2022. https://www.bmj.com/content/375/bmj.n2647/rr-1.

16 Vink M, Vink-Niese A. The Updated NICE Guidance Exposed the Serious Flaws in CBT and Graded Exercise Therapy Trials for ME/CFS. Healthcare (Basel). 2022 May 12;10(5):898. doi: 10.3390/healthcare10050898. PMID: 35628033; PMCID: PMC9141828.

17 ME/CFS and Long COVID share similar symptoms and biological abnormalities: road map to the literature. 2023. Frontiers in Medicine. doi.org/10.3389/fmed.2023.1187163

18 Treatment Harms to Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. 2022. Advances in Bioengineering & Biomedical Science Research. DOI: 10.33140/ABBSR.06.01.01

19 Geraghty K, Jason L, Sunnquist M, Tuller D, Blease C, Adeniji C. The ‘cognitive behavioural model’ of chronic fatigue syndrome: Critique of a flawed model. Health Psychol Open. 2019 Apr 23;6(1):2055102919838907. doi: 10.1177/2055102919838907. PMID: 31041108; PMCID: PMC6482658.

20 van Campen CLMC, Rowe PC, Visser FC. Deconditioning does not explain orthostatic intolerance in ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). J Transl Med. 2021 May 4;19(1):193. doi: 10.1186/s12967-021-02819-0. PMID: 33947430; PMCID: PMC8097965.

21 Sweetman E, Ryan M, Edgar C, MacKay A, Vallings R, Tate W. (2019). Changes in the transcriptome of circulating immune cells of a New Zealand cohort with myalgic encephalomyelitis/chronic fatigue syndrome. Int J Immunopathol Pharmacol. 33:205873841882040.

22 Tirelli U, Chierichetti F, Tavio M, Simonelli C, Bianchin G, Zanco P, Ferlin G. Brain positron emission tomography (PET) in chronic fatigue syndrome: preliminary data. Amer J Med 1998; 105(3A): 54S-58S. [PMID: 9790483]

23 De Lange F, Kalkman J, et al. Gray matter volume reduction in the chronic fatigue syndrome. Neuroimage 2005; 26: 777-81. [PMID: 15955487]

24  Ghali, A., Richa, P., Lacout, C. et al. Epidemiological and clinical factors associated with post-exertional malaise severity in patients with myalgic encephalomyelitis/chronic fatigue syndrome. J Transl Med 18, 246 (2020). https://doi.org/10.1186/s12967-020-02419-4

25 Letter from Ministry of Health. 19 Dec 2022. https://drive.google.com/file/d/1Mkc7tIfXLcMaWQm63_aGRDhN8dEjSWwj/view?usp=drive_link

26 Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. 2011. Lancet. https://pubmed.ncbi.nlm.nih.gov/21334061/

27 Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT. 2018. BMC Psychology. https://doi.org/10.1186/s40359-018-0218-3

28 CDC Treating the Most Disruptive Symptoms First and Preventing Worsening of Symptoms, 2021.https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/treating-most-disruptive-symptoms.html

29 National Institute for Health and Care Excellence (NICE). (2021). ‘Overview | Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis and Management | Guidance | NICE’. NICE. https://www.nice.org.uk/guidance/ng206

30  Vink M, Vink-Niese A. The Updated NICE Guidance Exposed the Serious Flaws in CBT and Graded Exercise Therapy Trials for ME/CFS. Healthcare (Basel). 2022 May 12;10(5):898. doi: 10.3390/healthcare10050898. PMID: 35628033; PMCID: PMC9141828.

31  Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management. 2021. Mayo Clinical Proceedings. L Bateman, et al. https://doi.org/10.1016/j.mayocp.2021.07.004

32  Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. 2023. Mayo Clinic Proceedings. https://doi.org/10.1016/j.mayocp.2023.07.032

33 Vernon, Suzanne D. et al. ‘Post-exertional Malaise Among People with Long COVID Compared to Myalgic Encephalomyelitis/chronic Fatigue Syndrome (ME/CFS)’. 1 Jan. 2023 : 1 – 8.

34  Ministry of Health. 2022. Clinical Rehabilitation Guideline for People with Long COVID (Coronavirus Disease) in Aotearoa New Zealand: Revised December 2022. Wellington: Ministry of Health.

35 Davenport, Todd E. et al. ‘Chronotropic Intolerance: An Overlooked Determinant of Symptoms and Activity in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. Frontiers Paed. 22 Marc. 2019, 7 https://www.frontiersin.org/articles/10.3389/fped.2019.00082/full

36 Editor’s note on correction to Crawley et al. (2018). http://dx.doi.org/10.1136/archdischild-2017-313375ednote

37 World ME Alliance. 2022. The Lightning Process – A Position Paper. https://worldmealliance.org/wp-content/uploads/2022/08/The-Lightning-Process-A-Position-Paper-by-the-World-ME-Alliance-2022-1.pdf

38 Strassheim, Victoria; Newton, Julia L.; Collins, Tracy (February 5, 2021). “Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis”. Healthcare. 9 (2): 168. doi:10.3390/healthcare9020168. ISSN 2227-9032. PMC 7914910. PMID 33562474.

39 Doctors with-ME. ”Rights and Obligations in ME/CFS: Overcoming normalised disregard for standards” https://doctorswith.me/rights-and-obligations-in-me-cfs-overcoming-normalised-disregard-for-standards/

Malcare WordPress Security