Medical Professionals

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

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

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

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

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

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

An overview of key recommendations include:

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

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

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

Secondary-Care-Hospital-Stays-for-Severe-Patients-Resource

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Understanding ME/CFS and long COVID:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a long-term, multi-systemic illness affecting the nervous, endocrine, autonomic, and immune systems. Patients experience severe fatigue, post-exertional malaise (PEM), unrefreshing sleep, cognitive impairment, and orthostatic intolerance. With over 100-200+ potential symptoms, the condition’s impact can vary greatly, making diagnosis and management highly individualised. Roughly 25% of all ME/CFS cases are categorised as mild, 50% as moderate-severe and 25% as very severe.[2] [3]

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

Post-Exertional Malaise (PEM)

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

About ANZMES

ANZMES, the Associated New Zealand ME Society, is the National Advisory on ME/CFS. Established in 1980, ANZMES has been at the forefront of research, representation, and education for ME/CFS in Aotearoa/New Zealand. The organisation is a registered provider of continuing medical education with the Royal New Zealand College of General Practitioners (RNZCGP) and is dedicated to improving the lives of those affected by ME/CFS and long COVID. ANZMES is a founding member of the World ME Alliance.

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

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

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

ANZMES submits to the Royal Commission

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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
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  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
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  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
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  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/
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  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
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  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
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  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/
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  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/
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  9. Aotearoa Covid Action. (2024). https://covidaction.nz/en/
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  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.
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  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.
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  14. Simpson LO. Myalgic encephalomyelitis. J R Soc Med. 1991 Oct;84(10):633. PMID: 1744860; PMCID: PMC1295578.
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  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
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  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
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  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
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  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
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  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.
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  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

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In this article:

The NICE Revisions Explained

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

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

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

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

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

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

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

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

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

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

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

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

Final words

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

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

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

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

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

Or visit their website:

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

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

World ME Alliance responds to opinion piece

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

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

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

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

JNNP publishes detailed NICE response article

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

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

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

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

by

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

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

Executive Summary

Introduction

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

Overview

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

Key practice points:

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

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

Best Practice Guidelines 

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

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

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

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

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

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

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

Why follow these Guidelines over others? 

Diagnosis

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

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

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

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

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

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

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

Symptom Management

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

What is PEM?

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

What is Pacing?

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

There are three treatments that are not recommended for ME by international best practice guidelines (Mayo Clinical Proceedings, NICE, and CDC):

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

Why is Cognitive Behavioural Therapy Contraindicated as Treatment for ME?

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

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

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

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

The pathophysiology of ME and Post Exertional Malaise (PEM)

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

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

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

Why is Graded Exercise Therapy Contraindicated for ME?

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

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

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

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

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

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

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

Why is the Lightning Process not recommended for ME?

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

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

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

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

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

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

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

Lived experience

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

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

Potential impact on the health of the community

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

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

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

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

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

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

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

We look forward to your positive response.

Yours sincerely

Fiona Charlton

President, ANZMES

Organisations in support of this letter:

M.E. Awareness NZ

Complex Chronic Illness Support

ME Support – NZ

MECFS Canterbury

MECFS MEISS (Otago and Southland)

Rest Assured Respite Trust

World ME Alliance

Emerge Australia

The ME Association (MEA)

Solve M.E.

Clinicians and Researchers in support of this letter:

Aotearoa/New Zealand

Emeritus Professor Warren Tate, University of Otago

Dr. Rosamund Vallings, MNZM

Dr. Anna Brooks, University of Auckland

Dr. Sarah Dalziel

Dr. Cathy Stephenson

Dr. Ken Jolly

Dr. Judijke Scheffer

Dr. Lynette Hodges, Massey University

Assoc. Professor Mona Jeffreys, Victoria University

International

Professor Sonya Marshall-Gradisnik, NCNED Professor

Dr. Charles Shepherd, MEA

Professor Leonard Jason, de Paul University

Professor Maureen Hanson, Cornell


References

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

ANZMES 2023 AGM Report

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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

Returning to functional activities and exercise after COVID-19 – Flow Chart

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Physiotherapy New Zealand has provided ANZMES with a flow chart for the return to exercise advice in the Long COVID space. 
Please find attached the flow chart designed for health care professionals to be supported in giving safe exercise advice.

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

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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

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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.

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For more information contact

info@anzmes.org.nz

ANZMES release Resources for Primary Care

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ME/CFS and long COVID in Primary Care

ANZMES releases two new resources to guide assessment and management of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and long COVID.

ANZMES (the national advisory for ME/CFS and a RNZCGP registered provider of continuing education) has released two short reference guides for primary care. These resources offer a snapshot of the key aspects of diagnosis, assessment, symptom management, comorbidities, and care and support planning.

“ME/CFS is a complex and often misunderstood condition, so the aim of this one page resource is to provide a simple reference guide for busy health professionals. We believe that education is key to improving outcomes for patients,” says ANZMES president, Fiona Charlton.

“Although assessment and evaluation for long COVID differs to that of ME/CFS, the management of long COVID, when there is no organ damage, is very similar to the management of ME/CFS. Utilising the expertise of our medical team, we provide a separate one page resource for long COVID in primary care.” she says.

ME-in-Primary-Care-ResourceDownload
LC-in-Primary-Care-ResourceDownload

ME/CFS

long COVID

Education for ME/CFS and long COVID.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Definition

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a long-term multi-systemic illness involving the nervous, endocrine, autonomic, and immune systems. The symptoms can range from mild to severe. This guide is designed to help GPs assess and manage ME/CFS and can be used in conjunction with the most current Diagnostic and Management Guidelines for ME/CFS.

Diagnostic Criteria

Despite there being over 20 different types of criteria developed over the past few decades, the criteria produced by the Institute of Medicine, in 2015, is considered the easiest, quickest, and most relevant criteria for a diagnosis of ME/CFS. This stipulates that three primary symptoms must be present: 1) post exertional malaise (PEM)  2) unexplained fatigue 3) unrefreshing sleep. At least one of either orthostatic intolerance or cognitive impairment must also be present. Symptoms must be present for at least six months, be moderate to severe and present 50% of the time.

The symptoms of a number of diseases can mimic ME/CFS, therefore it is important to conduct differential diagnosis to rule out other conditions first (for example,other fatiguing illnesses – anaemia, autoimmune disease, cardiac disease, endocrine disorders, malignancy, rheumatological disorders, neurological disorders – (such as MS, Parkinsons), primary sleep disorder, depression. Routine blood tests and urinalysis will help with this and it is important to note that with ME/CFS these standard tests are often within normal range.

During the acute phase of ME/CFS lymph node palpation may demonstrate slight enlargement. Although this reduces as the illness continues, patients may experience ongoing tenderness and pressure pain points.

Comorbidities

ME/CFS has common comorbidities such as Fibromyalgia (an overlapping condition), dysautonomia, allergies, irritable bowel syndrome (IBS), sleep disorders, Ehlers Danlos Syndrome or hypermobility, and multiple chemical sensitivities (MCS). However the presence of post-exertional malaise and symptom exacerbation, a key illness feature, increases the likelihood of ME/CFS as the correct diagnosis.The NASA Lean Test or the Active Stand Test are useful for diagnosing dysautonomia, such as neurally mediated hypotension or postural orthostatic tachycardia syndrome.

Triggers

ME/CFS has multiple triggers. The virus most associated with this illness is Epstein Barr (mononucleosis/glandular fever), however other viruses (for example, SARS-1, cytomegalovirus) and bacterial infections (for example, lyme, Coxiellia burnetti) are also associated, as are genetics, and environmental factors such as toxic chemical exposure or trauma (physical/emotional). ME/CFS can also be triggered by anaesthesia and surgical procedures.

Symptom Management

ME/CFS is a highly individualised illness, requiring a personalised, patient-centred approach. As there are many symptoms it is useful, in consultation with the patient, to identify the most pressing symptoms and tackle one at a time, per appointment. The main symptoms that can be managed with regular monitoring and review are: pain, sleep, stress, and general health measures. However, the key tool to introduce to patients is pacing – a self-management technique that balances activity and rest to help reduce or prevent PEM. Energy management helps support rehabilitation.

Everyone’s available energy limits are unique and what one person with ME/CFS can do in a day may be very different from another person with ME/CFS. During the course of the illness the energy envelope will fluctuate alongside the severity of symptoms. The more severe the symptoms, the less energy an individual has to do even a basic activity, such as showering or making a meal. In the acute phase, with appropriate pacing, an ME/CFS patient can recover. If symptoms remain longer than 18 months, continued activity pacing is recommended. 

Care and Support Planning

Care and support planning is crucial for a patient-centred approach. It is important to assess their individual circumstances and needs and educate the patient on symptoms and prognosis. Empathy is key, and acknowledging the reality of living with ME/CFS can build an effective therapeutic relationship, as can recognising that they may have experienced prejudice or disbelief. It is very important to include written handouts to help counter the cognitive impairments, providing the patient with a summary of your discussion and management plan.Patients may also require work certificates, insurance support, and letters to employers or schools.

When planning care and support a team-centred approach is beneficial, incorporating specialists, physiotherapists, occupational therapists, counsellors, and other health professionals as required. Local ME/CFS support groups can help patients with socialisation, understanding, and support. You can find a list of regional groups on the ANZMES website.

Additional resources with useful information, to inform your clinic practice, include local Health Pathways, the 2021 NICE guidelines,1 and Clinicians Primer.2  ANZMES is currently offering ‘Know M.E.’ – a video podcast and news series, which enables clinicians to earn credits whilst they learn about ME/CFS and post COVID conditions.

References

1 National Institute for Health and Care Excellence.(2022) ‘Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis andManagement’. 
https://www.nice.org.uk/guidance/ng206/resources/myalgic-encephalomyelitis-or-encephalopathychronic-fatigue-syndrome-diagnosis-and-management-pdf-66143718094021

2 Carruthers, B. M. et al. (2012). Myalgic encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine. 270, 327–338.

long COVID

Definition and Trigger

Long COVID has one trigger, the SARS-CoV-2 virus, also known as post-acute sequelae of SARS-CoV-2 or Post COVID condition, or long haul COVID are terms to describe long-term unexplained symptoms following infection with COVID-19 virus and are symptoms characteristic of ME/CFS and post viral syndromes.

Diagnostic Criteria

Long COVID is defined as symptoms consistent with COVID-19 infection that persist for more than 12 weeks after initial infection that cannot be explained by an alternative diagnosis. Symptoms may last weeks, months, or years, and may fluctuate as in ME/CFS. Some people with long COVID, who are still experiencing symptoms after six months, may fit the diagnostic criteria for ME/CFS. The Ministry of Health has published guidelines.

Cormorbidities

As long COVID is relatively new, there is not evidence to suggest that it has typical comorbidities in the way ME/CFS does. It may however, have issues related to organ damage or upper respiratory tract disorders, that are unique to this particular virus.

Symptom Management

People with long COVID experience a wide range of symptoms, with potentially multiple body systems involved, as is the case with ME/CFS. Research is showing that people with long COVID may experience more than 200 different symptoms, and many of them overlap with the experience of people with ME/CFS.

Breathing disorders and upper respiratory tract complications differentiate long COVID from ME/CFS. A referral to a cardio respiratory physio is helpful for breathing pattern assessment.

The cardinal symptom that characterises ME/CFS is post exertional malaise (PEM), which is a worsening of symptoms after physical, mental, or emotional activity, which can occur immediately or up to 72 hours after the activity. People with long COVID are also experiencing PEM or what is more commonly referred to for this subgroup as post exertional symptom exacerbation (PESE). It is very important, despite the patient’s strong desire to return to work, sport, and daily routines, to ensure that they follow a slow, steady, and measured return to activity. Patients must be able to perform daily activities (washing, dressing, meal prep etc) without PESE before a careful, symptom paced return to exercise is considered. An activity diary is very helpful to track symptoms and energy levels, to measure what types of activity induce PESE and those that do not. Referrals to occupational therapists are very helpful for energy saving devices, and support with learning to pace activities.

Care and Support Planning

As with ME/CFS (see information above), a patient-centred approach is paramount. Before a COVID-19 infection, the majority of people experiencing long COVID were healthy, fit, and of working-age, living active lifestyles. The sudden change in functionality and energy can be a big shock and there is much higher incidence of anxiety and depression for people with long COVID when compared to those with ME/CFS. Wellbeingsupport.health.nz is a great resource for free early intervention for mild to moderate mental health support.

The ME/CFS support groups and organisations throughout Aotearoa/NZ have opened their doors to people with long COVID – offering support, advocacy, advice, information, and education.

CME Education

For health professionals wanting to learn more about ME/CFS and long COVID, ANZMES is currently offering ‘Know M.E.’ – a video podcast and news series, which enables clinicians to earn CME/CPD credits whilst they learn about ME/CFS and post COVID conditions.

Visit ANZMES medical professionals page for more information.

ANZMES is the national advisory for ME/CFS offering representation and advocacy, national level support, education, and research funding. ANZMES is a RNZCGP registered provider of continuing education.

New CME accredited series for health professionals

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Announcement – new CME accredited ME/CFS education series for health professionals

ANZMES is excited to announce a new CME accredited education series for health professionals, providing monthly news, articles, and podcasts with the latest evidence based information about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Post COVID Conditions, launching on the 13th of April. 

Each month we will be talking to leading ME/CFS experts to provide clinicians with the latest information about ME/CFS, including diagnosis, best practice management, offering case studies and links to deep dive content and research to help you and your patients understand and manage both ME/CFS and Long COVID.

“ME/CFS is a complex and often misunderstood condition and we believe that education is key to improving outcomes for patients,” says ANZMES president, Fiona Charlton.

“We understand that there is a lot of information out there quoting flawed studies and offering outdated advice. We also understand how time poor health professionals can be. That is why we are offering a comprehensive and robust program with up-to-date, peer-reviewed information that gives them valuable CME credits, in a flexible, online format that is easy to access and digest.

“We’re thrilled to launch this resource to help healthcare professionals gain a better understanding of the condition.”

The podcast will feature interviews with leading experts, researchers, clinicians and patient advocates, including Dr Ros Vallings, Emeritus Professor Warren Tate, Dr Anna Brooks, Dr Neera Jain, and Dr Lynette Hodges and will cover a range of topics from classification and symptomology, best practice management, and biomedical research advances.

With informative and engaging discussions, this series promises to shed light on the many facets of ME/CFS where health professionals can explore the latest findings, treatments and lived experience of this debilitating illness.

To receive the series in your inbox you can sign up online at: https://forms.gle/ntH67hkz2S5Jj8xt7

The Associated New Zealand Myalgic Encephalomyelitis Society, (ANZMES) is the national advisory body for ME/CFS in New Zealand, offering representation, information, national level support and research funding.

ANZMES is a RNZCGP registered provider for continuing education.

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