News from Aotearoa/New Zealand and the Pacific Islands

The Press: "Young father with chronic fatigue desperate to get well for his family"

"Tyrone Hauraki’s limbs feel like they have ropes tied around them.

He’s exhausted every day. He has brain fog, and a tickle in his throat that does not go away. Bright lights hurt his eyes, conversations are tiring, and for long periods of time even part-time work has been impossible.

For four years, the 28-year-old father of two has tried to get answers for his symptoms. No treatment has worked.

His 4-year-old daughter Mila has only known a sick dad, not the vibrant, “life of the party” and “class clown” his friends knew before.

Hauraki has been diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

His diagnosis was a process of elimination, something he felt doctors often defaulted to if nothing else made sense. It’s not a diagnosis he completely accepts."

"About four years ago, Hauraki was out for a run when his lungs started to burn. He was the fittest he had been, so it was unusual, he said.

“By the time I got home something felt really wrong. The burning in my lungs stayed there all day. When I woke up in the morning it actually felt worse.”

He developed a sore chest and the tickle in his throat. He went to his GP, who gave him antibiotics for a chest infection.

When that didn’t work, he was given more antibiotics for a sinus infection. For over a year, he went back to the GP about every two weeks with the same symptoms.

Nothing worked."

"His family and friends fundraised $13,000 for a type of stem cell treatment, which Hauraki had last week.

It is not yet known if it will have any effect.

A haematology specialist doctor urged caution over pursuing stem cell treatment for chronic fatigue, citing a lack of research into its efficacy.

There was no published case of using blood stem cell transplant for chronic fatigue, the doctor said.

But Hauraki was willing to try anything, he said, as he just wants to get well for his family."
 
I haven't noticed any reports of stem cell research for ME. I barely know what it is except for its use after chemotherapy in lymphoma and leukaemia. What would be the rationale for it in ME?

I wrote my usual letter about using 'chronic fatigue' in the headline.

Edit: The headline has now been changed to include 'syndrome'. I even got a nice email to let me know :)
 
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NZ research project seeking (anonymous) stories from people who have given up on seeking healthcare due to bad experiences due to biases against race, gender, disability etc (closes 1 August 24).

Not ME specific so I don't think it needs its own thread. Just posting in case some members here have stories they want to share. I haven't looked at the project in detail so do your own due diligence first. A quick skim shows there are a couple of ME/CFS already

Article about the project:
https://theconversation.com/i-felt-...f-shame-stop-people-seeking-healthcare-231683

Link to project itself:
https://wahikorero.co.nz/projects/i-felt-too-whakama-to-go-to-the-doctor/
 
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Critical Reforms Needed For ME/CFS Patients In Aotearoa: Coalition Calls On HDC For Action
Monday, 5 August 2024, 6:29 pm
Press Release: ANZMES


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.
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https://www.scoop.co.nz/stories/GE2...otearoa-coalition-calls-on-hdc-for-action.htm
 
Grant Illingworth KC appointed as Commissioner to the NZ Covid-19 Royal Commission.



"[My wife and I] experienced lockdown in almost privileged circumstances, but we experienced Covid in a way that affected me personally quite badly. I had a period of illness which I attribute to Long Covid."
 
Thanks for posting about Grant Illingworth, SNT.

Dr Richard Webby was just on Radio New Zealand Sunday Morning
The recording isn't up yet, but I will update the post when it is. (Link since updated)
https://www.rnz.co.nz/news/covid-19/525469/covid-19-will-be-with-us-forever-flu-expert

Professor Webby is part of the International Advisory Group of One Health Aotearoa, and has a WHO role
Professor Richard Webby
International Advisory Group
Professor Richard Webby obtained his PhD from the University of Otago, Dunedin. He then moved to St Jude Children’s Research Hospital, Memphis, USA for a postdoctoral fellowship under the guidance of Robert Webster, a pioneer in the area of zoonotic influenza.

Richard moved up the ranks at St Jude and he is now a Professor in the Department of Infectious Diseases. He also directs the World Health Organization Collaborating Center for Studies on the Ecology of Influenza and a US NIH-funded Center of Excellence in Influenza Research and Surveillance.

Richard’s research interests focus on understanding the factors that govern interspecies transmission of influenza viruses and developing counter measures. This work involves combining field studies in both animal and human populations with laboratory activities with a focus on emerging influenza threats.
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The reason I'm posting about this is that Long Covid is briefly discussed as part of the conversation about Covid-19. The interviewer asked if there is any doubt about Long Covid not being psychological and Professor Webby was very definitive, no doubt at all, it's not psychological. He noted that SARS-CoV-2 is not the only disease that causes post-infection syndromes. Professor Webby and One Health Aotearoa are worth keeping in mind as possible collaborators - e.g. with Webby's WHO connection and One Health Aotearoa's capacity in health economics, epidemiology and more
One Health Aotearoa is dedicated to improving the health and wellbeing of New Zealanders by providing new approaches to our management, prevention and control of infectious diseases.
Our mission is to break down traditional silos and bring together the best scientists from diverse disciplines, including non-traditional fields. We aspire to be the national leader in infectious diseases research, education and advocacy, and the primary point of contact in New Zealand for international engagement and collaboration in ‘One Health’.

One Health Aotearoa was initiated in 2013 around a unique three-way alliance between the University of Otago’s medical school, Massey University’s veterinary school and the Institute of Environmental Science and Research (ESR), who are the national reference laboratory and surveillance provider for infectious diseases.

In 2017, the One Health Aotearoa alliance was awarded flagship research centre status with funding from the University of Otago. This has allowed us to extend our network of scientists, form new research partnerships and work with government departments and policy makers through annual symposiums and workshops.

Diverse research disciplines
We bring together diverse research disciplines to examine the factors underpinning infectious diseases issues:

  • Computational biology, bioinformatics and modelling
  • Environmental economics
  • Environmental health and climate change
  • Environmental microbiology and microbial ecology
  • Foodborne and waterborne disease
  • Freshwater ecology
  • Geospatial science
  • Health economics
  • Human infectious diseases
  • Māori health
  • Māori resource and environmental management
  • Microbiology, microbial physiology and molecular biology
  • Pacific health
  • Pharmaceutics and medicines
  • Public health and infectious diseases epidemiology
  • Rural health
  • Policy making
  • Veterinary epidemiology
  • Veterinary science
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ME Association
·

New Zealand: Radio station run from CFS/ME sufferer’s bed
"The 46-year-old creates a 90-minute show every few weeks full of gags, fun banter about television shows and movies, quotes and music centred on his favourite decades the 80s and 90s.
The show plays across 50 stations throughout New Zealand, Australia, the United Kingdom, the United States, Ireland and even in the Caribbean, Chile and Cook Islands.
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #Radio

https://www.nzherald.co.nz/bay-of-p...sme-sufferers-bed/YYW6KEQD3FB4RKYPDPFWTYQL2M/
 
Thanks for posting @Daisybell. From the article:

Hill knows of other women with similar gastrointestinal issues, who have also been dismissed as having anorexia.

“There's a couple of girls who are in very critical care at the moment, who are having exactly the same professional bias applied to these things.”

She hoped Tremain’s research and device will stop others experiencing the same traumatic death as Ruby.

“You can’t comprehend that someone can starve to death in our society.

“I'm still seeing it ongoing, which just horrifies me.”
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NZ Public Health Communication Centre — Long Covid: High economic burden justifies further preventive efforts
Amanda Kvalsvig, John Kerr, Paula Lorgelly, Nick Wilson, Michael Baker

A recent analysis suggests that Long Covid is likely costing the Australian economy approximately 0.5% of GDP in reduced productivity. In Aotearoa New Zealand (NZ) this GDP loss would translate to around NZ$2 billion per year. We need robust local data and economic analyses of productivity losses and other costs such as healthcare use to inform the cost-effectiveness of preventive interventions.
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Prof Tate is moving department. I'm somewhat relieved it's only a move. Otago University has been on a ruthless cost cutting mission for a while and I've been worried they'd be kicking him out altogether
press release" said:
The Department of Biochemistry will have a few less academic staff members after this month, with both Dr Sarah Diermeier and Emeritus Professor Warren Tate leaving in pursuit of new research adventures.

Emeritus Professor Warren Tate has been with the Department of Biochemistry for 57 years, having worked here ever since he started his PhD research, except for a few years as a postdoctoral researcher at the Baylor College of Medicine in Texas.

He is undoubtedly one of the most successful researchers that has worked in the Department. His pioneering research into how the protein-building machinery in cells (ribosomes) work has been recognised by many prestigious awards. He is a Fellow of the Royal Society of New Zealand, he won the Rutherford Medal "for his outstanding achievements in molecular biology and molecular neuroscience", he was made an International Research Scholar of the Howard Hughes Medical Institute in the USA, and he was named as a Companion of the New Zealand Order of Merit for services to science.

Warren took on the mantle of Emeritus Professor in 2020, but instead of fully retiring from academic life, he chose to keep his focus on research, in particular his more recent passion of investigating the mechanisms underlying chronic fatigue syndrome and long COVID. Warren now has the opportunity to extend his research by collaborating with Associate Professor Aniruddha Chatterjee from the Department of Pathology, so he is relocating his research base there.
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https://www.otago.ac.nz/news/newsro...stry-bids-farewell-to-highly-valued-academics

Chatterjee's profile: https://www.otago.ac.nz/healthsciences/expertise/profile?id=1735

Has published with Tate before:

https://www.s4me.info/threads/prepr...le-in-me-cfs-helliwell-tate-et-al-2022.24771/

https://www.s4me.info/threads/chang...emic-dysfunctions-helliwell-et-al-2020.17624/
 
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