me

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

by

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

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

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

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

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

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

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

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

Severe ME Day 2024 -Safer Hospital Care for Severe ME

by

Credit to the World ME Alliance for this content.

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

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

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

Current Challenges in Hospital Settings

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

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

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

Safer Hospital Care for People with Severe ME

Best practices to prevent exacerbating PEM and causing unnecessary harm:

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

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

Alternatives to Hospital Admission 

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

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

Further Resources

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

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

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

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

ANZMES: A #GlobalVoiceForME on World ME Day 2024

by

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

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

No Cure, No Universal Treatment

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

Building a #GlobalVoiceForME 

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

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

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

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

In the meantime:

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

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

ANZMES 2023 AGM Report

by

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

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

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

Highlights included;

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

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

President – Fiona Charlton

Vice President – Ange Robinson

Treasurer – Amy Ma

Reviewer – Alan Shanks

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

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

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

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

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

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

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

World ME Day asks you to learn about the broken energy system in ME/CFS – PRESS RELEASE

by

PRESS RELEASE – for immediate release

World ME Day asks you to learn about the broken energy system in ME/CFS

If you’ve never heard of post-exertional malaise (PEM) you’re not alone. But for people living with ME/CFS or long Covid understanding PEM is crucial to managing their illness. World ME Day on May 12 is an opportunity to increase your understanding of this little-known phenomenon.

Post-exertional malaise (PEM) is something that everyone with ME/CFS (Myalgic Encephalomyelitis /Chronic Fatigue Syndrome)  experiences. So what is it? Put simply, PEM is a debilitating and abnormal response to normal activity.

People with ME/CFS and long COVID have what is called an energy envelope. This is the amount of energy they have on any given day to function. Research and experience shows that if a person expends an equivalent amount of energy to the amount they have available they will reduce the symptom flares they experience.

When people with ME/CFS and long COVID push to do more than their energy envelope can cope with, the severity of their symptoms increase. This period of reduced functionality and exacerbation of symptoms typically starts within 12 to 48 hours after the activity or exposure and may last for days, weeks, or may also be permanent.

When PEM hits, people report existing symptoms increase, and that new ones appear including brain fog (executive functioning), flu-like symptoms (sore throat, muscle pain, increased fatigue); muscle weakness; increased sensitivity to noise, light or touch; pain; sleep problems.

How much and what type of exertion triggers PEM is different for each person. Triggers can include:

  • physical (walking around the mall or folding the washing);
  • cognitive (thinking, talking, reading)
  • processing emotional events (both positive and negative stressors)
  • sensory overload (noise, light, touch, smell, temperature, vibrations such as in vehicles)
  • physiological processes (digestion, temperature regulation, fighting infections)
  • orthostatic (sitting or standing upright vs lying down)
  • multi-tasking (even if individually each activity is within their Energy Envelope, e.g. talking while walking, or thinking while in a noisy environment)

Leading ME/CFS researcher Dr Lynette Hodges, Exercise Physiologist, Massey University, says “Individuals with ME/CFS are not lazy or deconditioned. Our research has shown physiological changes for those with ME/CFS. Both planned exercise and even simple activities of daily living can cause PEM.”

PEM is best managed by creating an individualised routine of rest and carefully paced activities within the individual’s current energy envelope. GP Cathy Stephenson states “If there’s one thing to impress upon health providers when it comes to the management of ME/CFS, it’s Pacing. Above all else. Pacing.”

Kate was diagnosed with ME 5 years ago after 20 plus years of health challenges triggered from a viral illness. Before this she was hardly ever sick, a school prefect, and played high level sport representing New Zealand for Water Polo. In 2018 her system crashed after pushing through symptoms for too long when numerous doctors weren’t able to help. She suffered with crushing fatigue that did not improve after a full night’s sleep and had to give up work, sports and her social life. She was mostly confined to her home, except for dropping off and picking up her boy from daycare/school and other activities.

She also experienced constant body pain, fluctuating headaches, neurological problems resulting in impaired memory and an inability to concentrate and Postural Orthostatic Tachycardia Syndrome (POTS), a dysfunction in the autonomic nervous system. Any physical, mental, or emotional effort would cause worsening of her symptoms and she had to learn to work within a very small energy envelope.

Five years on, Kate has made what is known as significant progress in the ME community, with a reduction in symptoms enough that she can work a small number of hours each week. She can attend more activities with her son, however her dreams of dancing and playing masters level competitive sports are not fulfilled and she is accepting that she may never reach these and other dreams she has.

World ME Day: LearnFromME – “ME: the disease where pushing harder can make you sicker.”

Visit the World ME Day information from ANZMES on https://anzmes.org.nz/worldmeday2023/

Follow the Learn From ME page on Facebook  on May 12th to follow the World ME Day campaign. This page is a collaborative initiative between the regional and national ME/CFS organisations:

ANZMES (Associated NZ ME Societies)
Complex Chronic Illness Support
ME Support
MECFS Canterbury
MEISS Otago
ME Awareness NZ
Rest Assured Respite Trust

Find out more about ME/CFS or to take action to support World ME Day by visiting: www.worldmeday.org

ME/CFS Reclassification Petition – ANZMES set to speak to parliament

by

ANZMES is set to speak to parliament on May 3rd to present an oral submission to the Health Committee – an opportunity to strengthen the argument for the reclassification of ME/CFS to a disability.

Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) petition to reclassify ME/CFS as a disability was read in Parliament, on the 13th of September 2022, and has been under consideration with the Health Committee since then.

ANZMES president, Fiona Charlton, will speak to parliament on behalf of the members that she represents, along with Emeritus Professor Warren Tate and RCNZGPs Fellow Dr. Sarah Dalziel, who will answer the committee’s questions.

ME/CFS is a debilitating long term condition that affects multiple body systems and is characterised by Post Exertional Malaise, where symptoms worsen after periods of even ordinary activities. The current classification of ME/CFS as an illness rather than a disability makes it difficult for individuals who suffer from the condition to access the necessary support that they need to lead quality lives.

“We must make this chronic condition a disability now and give people fair access to the help that they need,” says Charlton.

A growing number of people with long COVID are now being diagnosed with ME/CFS, putting strain on already exhausted resources.

There is no dedicated funding for the condition and the current classification and system is difficult to navigate. There are complicated assessment processes and policies. There is disparity between regions causing access inequality.

In order to be diagnosed with ME/CFS a person must be significantly impaired in terms of functioning in daily life, such as work or school.

ANZMES has presented the government with detailed reports, research and recommendations and now hope that they will listen and take the urgent action that is needed.

Reclassification will lead to real improvements for those in need; providing access to disability support services – much needed home help, housing support, financial support, and counselling access.

What is ME/CFS?

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

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

Who are ANZMES?

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

For more information contact

info@anzmes.org.nz

Podcast lecture that Dr Ros Vallings made at Dunedin meeting on 22nd September.

by

Dr Ros Valling’s lecture on 22nd September, 2014.

Ros2
Doctor Ros Vallings lecturing.

 

Thanks to Ros Vallings for coming to Dunedin and lecturing medical students. The following podcast was made for ongoing education for medical students.

http://www.youtube.com/watch?v=H9ZqGKxNpB8

Doctor Ros Vallings at the Public Meeting in Dunedin Colquoun Theatre 22 Sept, 2014.

by

Ros trip
Dr Vallings being introduced at the meeting.

Ros2
Dr Ros Vallings lecturing to the crowd.

Debbie
Debbie, ANZMES manager with resources ready to give out.

Doctor Ros Vallings lectured at the Colquhoun Theater in Dunedin on the 22nd September, 2014 to make a Podcast for Medical Students education at a public meeting.
Resources were given to Doctors and Medical Students who attended plus members of the public. There were over a large crowd who turned up on a cold snowy day to listen to the latest information from Ros.

ANZMES AGM 2nd November 2014

by

Australian Paediatrician Kathy Rowe
Australian Paediatrician Kathy Rowe

ANZMES AGM will be held on the 2nd November at 1pm at the CCS resource Centre in Royal Oak. Guest Speaker will be Dr Kathy Rowe a top Australian Paediatrician. After the AGM Kathy will be visiting many New Zealand main centres to lecture to paediatricians and Medical professionals.

Over the past 44 years, Kathy Rowe has achieved outstanding national and international recognition for her work in adolescent health. She is widely acclaimed as a caring, dedicated consultant physician, in the Centre for Adolescent Health at Melbourne’s Royal Children’s Hospital. She has also held academic appointments in the University of Melbourne’s Department of Paediatrics, involved in teaching, research and clinical work.

She is an expert in the area of chronic fatigue syndrome, having worked tirelessly and championed its cause when it was not fashionable. Prof Leonard Jason referred to her work as “the most elegant and important in the field” and stated that “the entire field has benefited from the precision and rigor of her methods.”She worked hard on the international committee establishing the paediatric case definition and diagnostic criteria for CFS/ME (2006).

Malcare WordPress Security