anzmes

Press Release – ANZMES Awards $25K Grant and $10K in Scholarships to Advance ME/CFS and long COVID Research 2024

by

For Immediate Release – 8/10/2024

The Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) is delighted to announce the recipients of their 2024 Research Grant and Scholarship Programme. ANZMES, the leading National Advisory on ME launched the programme in 2023 to support groundbreaking research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and long COVID. The programme can offer two $25,000 research grants to postgraduate students and academic researchers, specifically aimed at advancing laboratory-based studies. In addition, four $5,000 scholarships are available to support students undertaking ME/CFS and long COVID research in fields such as Health Sciences, Public Health, and Humanities. The programme is designed to foster a new generation of researchers and contribute vital knowledge to these under-researched conditions, which affect millions globally​​.

“This is our second year offering the programme, and we are very pleased to have received strong scholarship applications this year. We encourage postgraduate students to consider their Masters/PhD topics now, for next year’s funding round. In programmes with relatively low costs, scholarships can be used to help pay fees or study and living expenses,” says Fiona Charlton, ANZMES president.

This year, ANZMES has selected three outstanding researchers whose innovative projects will contribute to the growing body of knowledge in this field. Each recipient has been awarded significant funding to pursue their work, advancing ME/CFS and long COVID research in critical new directions.

Meet the 2024 Grant and Scholarship Recipients:

Associate Professor Mona Jeffreys and Kahurangi Dey
Victoria University of Wellington
Project: Exploring the Prevalence and Determinants of Food Insecurity in People with ME/CFS and/or Long COVID
This study, conducted in partnership with research candidate Kahurangi Dey, investigates food insecurity among individuals with ME/CFS and long COVID. The project will not only quantify the prevalence of food insecurity but will also contribute to the creation of an ME/CFS Registry in New Zealand, a vital resource for future research​.

“We are delighted to have been awarded a research grant from ANZMES. For many decades, research into ME/CFS has been overlooked, and these grants fill an important gap. Our research explores aspects of food insecurity in people with ME/CFS and Long Covid. Kahurangi is an expert in kai research, and Mona an expert in Long Covid, as well as living with ME/CFS. Of interest to us are the complexities and interrelationships between food access and utilisation for people living with chronic illnesses. We will be designing and distributing an online survey about food insecurity and barriers that people with ME/CFS and Long Covid face. Respondents will also be asked if they would like to be included in an ME/CFS Registry – it is essential that we start to count how many people are living with ME/CFS.” – Mona and Kahurangi

Melissa Blanc
Auckland University of Technology
Project: Exercise in ME/CFS Patients: Helpful or Harmful? A Systematic Review
Melissa Blanc’s systematic review aims to evaluate the safety and efficacy of exercise programmes for ME/CFS patients. With ongoing controversy regarding exercise as a treatment for ME/CFS, this research will address potential harms and benefits to ensure that exercise recommendations are based on high-quality evidence​.

“It is exciting to be selected for this scholarship. I hope this systematic review will be a valuable contribution to the body of evidence on the topic of exercise use in ME/CFS patients, and that it will help to improve the quality of life of ME/CFS patients.” – Melissa

Beth Hobbs
Victoria University of Wellington
Project: Psychological Support for ME/CFS Patients in Canterbury
Beth Hobbs, is applying to become a registered psychology intern to work with people and will eventually be working with ME/CFS patients in Canterbury to provide critical psychological services. This project focuses on the impact of long-term illness and psychological support to improve patient outcomes, with a particular emphasis on housebound patients​.

“Becoming a psychologist in the field of health has been a long-standing passion of mine. I feel incredibly honoured to have received the ANZMES Scholarship. The scholarship is intended to be used towards funding psychology registration training and an internship working directly with those experiencing symptoms of ME/CFS in Canterbury. ME/CFS has always been a strong focus in my work and study, which has strengthened with the rise of Long COVID. The negative psychological and emotional effects of ME/CFS can cause significant distress for the individual and their whānau, and deeply concerns the ME/CFS community. It will be an absolute privilege to work towards ameliorating people’s distress and assist those living with this challenging condition to enjoy a better quality of life and sense of self. My sincere gratitude to ANZMES for this opportunity!” – Beth

Associate Professor Mona Jeffreys and Kahurangi Dey (co-applicants) will receive a $25,000 grant, while Melissa Blanc and Beth Hobbs will each receive $5,000 scholarships to support their work.

ANZMES President, Fiona Charlton, expressed her excitement about the calibre of this year’s recipients “Each year, we are inspired by the dedication and innovation of our researchers. This year’s recipients not only highlight the urgent need for more research into ME/CFS and Long COVID but also embody the promise of future breakthroughs. We are proud to support their vital work.”

ANZMES continues to lead the charge in supporting vital research that seeks to improve the lives of those affected by ME/CFS and long COVID. Applications for next year’s grants will open in May 2025.

ME/CFS is a complex, debilitating, and often misunderstood medical condition, affecting millions of people worldwide, including at least 25,000 in New Zealand. Despite its widespread impact, there is remarkably little research or funding available.

This ANZMES funding programme was made possible by the generous support of members.

The Grant was awarded by ANZMES on the recommendation of their Grants and Scholarships Subcommittee.

Next year’s funding applications open 31st May 2025.

Visit anzmes.org.nz  for more information, grant regulations, and application forms.

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.

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: 

Severe ME Day 2024 -Safer Hospital Care for Severe ME

by

Credit to the World ME Alliance for this content.

Severe ME Day, held on the 8th of August each year, is a significant occasion for the World ME Alliance and the global community affected by Myalgic Encephalomyelitis (ME). This day is dedicated to shedding light on the experience of people with the most severe forms of ME enduring a life of relentless suffering in darkened rooms. The hashtag #SevereMEDay is used to amplify the voices of those with Severe and Very Severe ME, as well as honour those who have tragically lost their lives to this debilitating condition.

ME is a neurological disease with widespread dysfunction of the immune system and impaired cellular energy capacity. Severe ME has been described as a ‘living death’ because of the level of disability and suffering it causes. Severe ME patients are as ill as AIDS patients in the final weeks of life, but can survive in this state for years or decades.

The grave dangers people with Severe ME are exposed to in hospital were underlined at the recent coroner’s inquest in the UK for Maeve Boothby O’Neill. Maeve, a 27 year old woman with Severe ME and resultant malnourishment, died in Oct 2021 following 3 hospital admissions where denial of emergency nutritional care led to her terminal decline.

Current Challenges in Hospital Settings

People with Severe ME experience constant, crushing fatigue and unrelenting pain plus extreme sensitivity to stimuli such as noise and light, leaving them housebound or bedbound. All of these are exacerbated by the hallmark symptom of ME: post-exertional malaise (PEM). PEM is an acute worsening of symptoms after even minimal physical, mental, or emotional exertion. For Severe ME patients, even sensory overload (light, sound, smell, touch) can induce painful and disabling PEM that may last days, weeks, or permanently. Very Severe patients may experience periods of paralysis and are completely reliant on caregivers.

Leaving the house is such a dangerous prospect for people with Severe ME, that they will only consider going to hospital in a dire emergency. Just travelling in a car and interacting at reception could have neurological impacts that trigger a huge reduction in their quality of life for months to follow. A hospital admission is a huge risk and needs to be acknowledged as such by health authorities.

Unfortunately, most individuals with Severe ME report poor experiences in hospital settings. Stigma and misunderstanding, environmental sensitivities and inadequate care too often result in dramatically increased suffering. 

Safer Hospital Care for People with Severe ME

Best practices to prevent exacerbating PEM and causing unnecessary harm:

  1. LISTEN to ME: Listen to people with ME and their carers with lived experience of symptom management. Develop personalised care plans with family members that respect their knowledge of the patient’s unique needs. Do not ignore their requests to protect the patient from PEM. Take advice from ME specialists.
  2. Educate healthcare staff: Provide comprehensive training to healthcare professionals on ME, particularly the severe form of the condition, and common comorbidities. Discredited treatments CBT and GET are inappropriate for Severe patients and may cause deterioration.
  3. Allow advocates: Allow a family member or carer to stay at all times if requested by the patient. Obtain consent from the outset to have a family member or advocacy worker to speak on their behalf.
  4. Safeguard rest: Undisturbed sleep is vital to prevent decline. Respect the patient’s need for strict pacing of activities to survive hospital admission and prevent adrenaline surges. Eliminate all non-essential interaction, move slowly and quietly around the patient.
  5. Ensure a low-stimulus environment: Allocate private rooms that are soundproofed and dimly lit. Minimise chemical or fragrance smells, sensory overload and physical contact. Work with carers to establish sustainable temperature levels and access times.
  6. Support nutritional care: Recognise that people with Severe ME have acute food intolerances and may not have enough energy to swallow or digest. Allow special diet foods, flexible meal times and adjusted feeding positions. Initiate IV hydration, oral nutrition support, enteral tube feeding or parenteral nutrition where appropriate. 
  7. Enable medication management: Most people with ME have extreme sensitivities and potential adverse reactions to drugs. Start medications one at a time and taper up slowly from a fraction of normal dose to avoid harm. 
  8. Respect reasonable adjustments: People with Severe ME need dark glasses, headphones or earplugs and eye-masks. They usually have orthostatic intolerance and need to lie flat at all times. Many are hypermobile and hypersensitive to touch and simple movement may cause pain for weeks afterwards. Be guided by caregivers.
  9. Prioritise communication: It is vital to provide clear and compassionate communication with cognitively compromised patients and their families and involve them in decision-making processes. If patients can tolerate conversation, speak slowly and quietly; provide additional time for them to process information. 
  10. BELIEVE ME: Severe ME has a much lower quality of life than cancer, stroke, MS and chronic renal failure. Patients should be treated with respect, their physiological disease recognised, and their symptoms addressed. Please don’t magnify distress with disdain or medical gaslighting. 

By fostering an informed and compassionate healthcare environment, the hospital experiences and overall well-being of people with Severe ME can be substantially improved.

Alternatives to Hospital Admission 

To assist Severe ME patients to avoid risking extreme PEM and baseline deterioration with unnecessary hospital admissions, the World ME Alliance calls on global medical authorities to offer remote consultations, home visits and palliative care. If hospital admission is imperative, people with energy-limiting conditions should be provided with ME-sensitive transport, dim lights and sofas to lie on in waiting rooms or a stretcher in a separate darkened room.

The onus should be on medical authorities to coordinate multi-disciplinary, connected and continuous care rather than forcing the severely ill to waste scarce energy on driving the process, risking further deterioration. There should also be an acknowledgement of intersectional challenges and poverty compounding difficulties of obtaining treatment.

Further Resources

For more detailed guidance on supporting people with ME/CFS in hospital settings, please refer to the comprehensive booklet Supporting People with ME/CFS in Hospital developed by 25% ME Group, Action for M.E., Blue Ribbon for the Awareness of ME and the ME Association based on UK guidelines. 

#MEAction USA has developed a Health Information Form to help individuals clearly lay out their medical information and needs. 

Finally, check out #MEAction’s Hospital Checklist to help patients with ME plan and pack for a hospital visit. 

With thanks to the Severe ME focus group and resources of Sammy Lincroft m.e_and_more.

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 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

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

myalgic-encephalomyelitis-or-encephalopathychronic-fatigue-syndrome-diagnosis-and-management-pdf-66143718094021

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 (Mayo Clinical Proceedings, NICE, 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 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 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 GET and CBT 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/

ANZMES 2023 AGM Report

by

The ANZMES AGM was held at 1pm on the 18th November 2023 via ZOOM online meeting.

This was ANZMES 43rd AGM of caring and supporting people with ME/CFS and their whanau and carers, as well as disseminating information, resources, and education to them, the general public, and medical professionals. ANZMES is looking at new initiatives as part of our strategic planning for the next year, and will continue to fund vital research that benefits the ME/CFS community as more physiological evidence is discovered and more understanding of the condition is brought to the fore.

Fiona Charlton (President) opened the AGM Meeting and the President’s report outlined some of ANZMES activities throughout the year. 

Highlights included;

  • This year we are proud to have launched a Grant and Scholarship Programme for postgraduate students and academic researchers. This will be an annual fund for ME/CFS and long COVID study. Two exciting projects are proceeding thanks to the ANZMES Grants of $25,000 each
  • ANZMES launched Know M.E. Series for health professionals providing a monthly newsletter packed full of evidence-based information and research. The associated video podcasts are publicly available. This series is CME accredited by the Royal NZ College of GP’s, and ANZMES is a Registered Provider for continuing medical education. This series features a newsletter covering a different topic each month. Know M.E. also includes a podcast which is publicly available on Spotify, iHeart Radio, Google Podcasts, and iTunes/Apple. The video version is publicly available on YouTube. Each month features special guest interviews speaking about M.E. topics.
  • In May 2023 ANZMES launched two one-page resources for the diagnosis and management of ME/CFS and long COVID in primary care.
  • In early November 2022 we held a long COVID educational event for health professionals. We had over 150 registrants, including GPs, nurses, nurse practitioners, clinic managers, med students, physiotherapists, OTs, and more. Our speakers talked about post exertional malaise and how to avoid it, described the similarities and differences between Long COVID and ME/CFS, how to diagnose both conditions, how to treat through allied health, and the effects of COVID and Long COVID in Māori and Pasifika communities.
  • Dr Sarah Dalziel attending the the 3rd ME/CFS International Conference 2023: RID – Research Innovation and Discovery and provided a summary of the conference.

All present committee member’s have continued their term and were voted on for the upcoming year. The appointments are as follows:

President – Fiona Charlton

Vice President – Ange Robinson

Treasurer – Amy Ma

Reviewer – Alan Shanks

Executive committee – Anna Brooks, Suzanne Duffy, Wendy Matthews, Steve Murray, Gabby Shortt and Ros Vallings.

Heather Wilson who has been on the ANZMES committee for well over 20 years has now stepped down. A very, very special thanks go to Heather for her hard work and time spent on the committee and time spent helping people and their whanau, it is much appreciated. After the AGM was announced closed a presentation was played of Heather’s farewell which was held online and in person in Dunedin on Friday 3rd November 2023.

Dr Sarah Dalziel and Ken Jolly both continue as ex officio Medical Advisor’s to ANZMES. We would like to sincerely thank Sarah and Ken for their time and effort to help answer any queries we may have in the medical field. 

Membership Fees for 2024 have remained unchanged, they are set at:

  • $10.00 for Full membership
  • $5.00 for Concessionary membership
  • $5.00 for Family members
  • A free Helping Hand option will be available for people who suffer severe financial hardship.

After the AGM had finished, Dr Sarah Dalziel gave a presentation on her attendance at the 3rd ME/CFS International Conference 2023: RID – Research Innovation and Discovery. 

YouTube links to the AGM attached below
AGM 2023 – 1 of 3
AGM 2023 – 2 of 3
AGM 2033 – 3 of 3

Malcare WordPress Security