World ME Day 2024 – Press release

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

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

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.


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

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.

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

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

ANZMES AGM – Saturday 18th November 2023

All are welcome to the ANZMES AGM to be held via ZOOM this year, Saturday 18th November starting at 1pm.

Featuring guest speaker Dr Sarah Dalziel talking about attending the 3rd ME/CFS International Conference 2023: RID – Research Innovation and Discovery.

Simply click the link below to join (if joining from mobile, it may ask you to download the Zoom app).Details below 🙂

Join Zoom Meeting

https://us06web.zoom.us/j/83551071674?pwd=d2piQ1A4cFkvcklnbUJFU3MwL3Nwdz09

Meeting ID: 835 5107 1674

Passcode: 787146

Press Release – ANZMES Awards Academics 25K Grants to Boost ME Research


For immediate release – 18/09/2023

Two New Zealand researchers have been chosen to receive the Associated New Zealand Myalgic
Encephalomyelitis Society (ANZMES) annual grant of $25,000 to undertake vital research into
increasing understanding of Myalgic Encephalomyelitis (ME, also known as Chronic Fatigue
Syndrome), in Aotearoa.

ANZMES, the National Advisory on ME, launched the new grant and scholarship programme for
postgraduate students and academic researchers this year – aimed at supporting those
interested in researching ME and long COVID. With six funding opportunities available, ANZMES
encouraged applications from those seeking to undertake research that furthers understanding,
treatment, or prevention of ME and long COVID, including two $25,000 grants and four $5,000
scholarships to support research and study costs.


The 2023 Grant recipients are:
● Principal investigator: Dr. Nicholas Bowden, Research Fellow, Department of Women’s and
Children’s Health, University of Otago (pictured below. Photo credit: University of Otago).


Co investigators: Keith McLeod, Associate Principal, Kōtātā Insight.
Dr. Rosamund Vallings, retired GP, Howick Health and Medical
Centre.
Emeritus Professor Warren Tate, Department of Biochemistry,
University of Otago.
Professor Barry Taylor, Department of Women’s and Children’s
Health, University of Otago.
Francisca Anns, PhD Candidate, COMPASS Research Centre,
University of Auckland.


The study will investigate the health, labour market, and social service use of people with
ME, in NZ, through a population study.
Dr. Bowden says, “we are excited and grateful to receive this grant to undertake what we believe
is an important piece of research, providing foundational population-level evidence on health,
labour market, and social service outcomes for those with ME/CFS in Aotearoa/New Zealand for
the first time.”


● Principal investigator: Dr. Lynette Hodges, Senior Lecturer School of Sport, Exercise and
Nutrition, Massey University, Registered Clinical Exercise Physiologist (pictured below.
Photo credit: Massey University).


The study will investigate activity and energy management and
the hallmark symptom post-exertional malaise (PEM), in people
with ME through an observational study that assesses exertion
during normal daily activities of living, such as doing dishes or
laundry.

Dr. Hodges says, “I am so thrilled to learn that my research
application was chosen. I hope that this research will be able
to be of benefit to those with ME/CFS. As a Clinical Exercise
Physiologist, I am keen to help people live their best lives and hope that this study will develop a
better understanding of how activities of daily living affect the physiology of those living with
ME/CFS.”

Dr. Bowden and Dr. Hodges will both receive the $25,000 Grants through their respective
universities, to carry out their research projects.

ANZMES President, Fiona Charlton, says, these investments will help facilitate a crucial source of
New Zealand based research, furthering our understanding of the disabling condition.

“We are really pleased by the calibre of the work proposed by both recipients.
“With Dr. Bowden’s work, for the first time we will have a foundational study that offers insight into the lives and experiences of people with ME in Aotearoa.

“We understand the burden of disease from an international research perspective but New
Zealand based studies are lacking.

“Research into PEM and activity management will also be invaluable for both patients and health
professionals and will have implications for long COVID management and recovery.

“While we did not receive any scholarship applications, we encourage postgraduate students to
consider their Masters/PhD topics now, for next year’s funding round. In programs with relatively
low costs, scholarships can be used to help pay fees or study and living expenses,” says Charlton.

ME is a complex, debilitating and often misunderstood medical condition and although millions of
people suffer with the illness worldwide, including a significant population in New Zealand, 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 May 31st.
Visit anzmes.org.nz for more information, grant regulations, and application forms.


What is ME/CFS?
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is often triggered by a viral
illness and involves overwhelming fatigue and other symptoms that range in severity as it affects
many body systems, such as the immune, neuroendocrine and autonomic nervous system.
The key characteristic of ME/CFS is post exertional malaise (PEM) which presents 12-48 hours
after exertion, and can result in days to weeks of exacerbated symptoms. For the very severe, this
exertion can be simply trying to speak, or eat.


Who are we?
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 for health professionals – 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.

Press Release – ANZMES welcomes HSC recommendations for improved access to disability services for people with ME/CFS.

For immediate release – 22/08/2023

Petition response: ANZMES welcomes Committee recommendations for improved access to disability services for people with ME/CFS

ANZMES, the National Advisory on Myalgic Encephalomyelitis (ME), has welcomed the Health Select Committee’s (HSC) response to its petition delivered in September 2022, calling on the Government to reclassify ME as a disability.

The Health Select Committee presented its report to parliament on 17th August 2023, sending a strong message acknowledging ANZMES petition to reclassify ME – also known as Chronic Fatigue Syndrome (CFS) – as a disability with the recommendation that eligibility criteria for disability services be amended.

The 10 page HSC Report recommends that the Government take note stating “we understand that ME/CFS meets the Government’s definition of a disability. We therefore, encourage Whaikaha to consider amending its eligibility criteria to enable people with ME/CFS to access Whaikaha-funded disability support services.”

The Report also acknowledged concerns raised by ANZMES that the current classification and system is flawed with complicated assessment processes and policies and disparity between regions causing access inequality.

ANZMES President Fiona Charlton says the acknowledgement and recommendations are “a step in the right direction.”

“The struggle is real for so many people with ME and improving access to Whaikaha-funded support services could give so much relief to them.”

The HSC Report acknowledged that the eligibility criteria differ between Whaikaha and Te Whatu Ora-funded services, resulting in inequitable access.

The Report also states that a person does not require a classified disability to access health services, however in practice ANZMES has found that many with ME/CFS are denied help, despite the obvious need. ANZMES understand that support needs to be prioritised but at present, due to a misconception around the severity of the illness and the lack of functionality that results, many are seen as low on the priority scale.

ANZMES plans to continue to discuss this with the government and Whaikaha and would like them to consider working together to improve current assessment pathways and streamline the process to reduce access inequity across the country.

People with this debilitating condition face a barrier to support under the current classification of “chronic illness” and as a result experience poor quality of life and health inequity. With increasing numbers of people with long COVID (LC) being diagnosed with ME/CFS the existing support through nonprofit organisations is set to become unmanageable, with case numbers still rising.

People with ME want to see the actual implementation of these recommendations. Practical help is urgently needed for this growing under-supported, disabled community that could lead to a better prognosis and better quality of life.

To view the full report:

HSC-2022-Final-report-Petition-of-ANZMES

——————————————————————————–

What is ME/CFS?

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is often triggered by a viral illness and involves overwhelming fatigue and other symptoms that range in severity as it affects many body systems, such as the immune, neuroendocrine and autonomic nervous system.

The key characteristic of ME/CFS is post exertional malaise (PEM) which presents 12-48 hours after exertion, and can result in days to weeks of exacerbated symptoms. For the very severe, this exertion can be simply trying to speak, or eat.

ME ANZMES logo with albatross bird representing support

Who are ANZMES?

The Associated New Zealand ME Society (ANZMES) has been providing information, awareness for ME, funding research, and advocating for people with ME for the past 43 years (since 1980). As the National Advisory on ME in Aotearoa/New Zealand, ANZMES disseminates evidence-based information nationally, and represents the ME voice globally as a founding member of the World ME Alliance. ANZMES acts as the voice of all people living with this disabling disease through advocacy and leadership. ANZMES is a RNZCGP registered provider for continuing education. Health professionals can earn CME/CPD credits with ANZMES latest education programme – Know M.E. – a video podcast and news series featuring up-to-date, evidence based research and information on ME/CFS and Post COVID Conditions.

————————————————————————————-

For more information contact

info@anzmes.org.nz

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