News from Aotearoa/New Zealand and the Pacific Islands

Another, more detailed, news article about the interim data coming out of the NZ Long Covid registry study
newsroom said:
Between 6 percent and10 percent of those who get Covid-19 end up with symptoms that persist beyond the period of acute illness. Sometimes these symptoms are minor. Sometimes they diminish or disappear completely, in time. Often, they are grievous and chronic.

The Long Covid Registry follows another nationwide study into the impact of Covid-19 in New Zealand. That project sought to interview everyone infected before the Omicron wave. About 10 percent of that population was reached, in the end, and 22 percent of those met the World Health Organisation classification for Long Covid. They reported stigmatisation, a lack of financial support, and trouble even getting their doctors to take them seriously.
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Not just the doctors not taking them seriously
newsroom said:
In December, Newsroom reported that the Treasury, the Department of Prime Minister and Cabinet, the Ministry for Social Development and the Ministry of Business, Innovation and Employment had not done any work to discern the potential impacts of the illness on the economy or any other aspect of New Zealand society. The health and education ministries had also not undertaken any work on the impact on their respective workforces.
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newsroom said:
Since then, a summer intern at the Treasury did estimate that Long Covid cost the New Zealand economy $140 million in 2022, though this doesn’t represent a formal Treasury finding.
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https://newsroom.co.nz/2023/11/17/this-isnt-a-life-the-crushing-burden-of-long-covid/
 
https://www.rnz.co.nz/national/prog...ted-and-isolated-living-and-dying-with-me-cfs

HEALTH
9:29 am today
Unsupported and isolated: living and dying with ME/CFS
From Saturday Morning, 9:29 am today

4KYBNUK_Sean_and_Maeve_This_was_taken_in_New_York_in_2010_jpg
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Sean O'Neill and his daughter Maeve Boothby-O'Neill Photo: supplied

An inquest hearing in the UK has heard how 27 year old Maeve Boothby-O'Neill died from complications relating to ME, following years of inadequate care from the National Health Service.

At least 25-thousand people live with ME (Myalgic Encephalomyelitis), also known as chronic fatigue syndrome in New Zealand.

The real number is likely higher, due to the nature of it being an 'invisible illness'.

Maeve's father Sean O'Neill is a Times correspondent. He is joined by leading researcher in ME/CFS in New Zealand, University of Otago Emeritus Professor Warren Tate.

Listen duration31′ :12″



https://twitter.com/user/status/1733238162447794395
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Dolphin said:
https://www.rnz.co.nz/national/prog...ted-and-isolated-living-and-dying-with-me-cfs

HEALTH
9:29 am today
Unsupported and isolated: living and dying with ME/CFS
From Saturday Morning, 9:29 am today
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The programme has two quite separate sections:

First a harrowing interview with Maeve's father Sean O'Neill, mostly about her life and medical misfortunes; the inquest is only mentioned in passing. This section is very moving but hard to listen to so you may want to skip it if feeling emotionally vulnerable.

Warren Tate's section starts at about 18min30. The interview is mostly good in that it highlights how far we still have to go in improving medical education about ME. Unfortunately there's a wobble in the middle where poor choice of phrase made it sound like his daughter's improvements were directly due to her fighting spirit. And fortunately the interview cuts off mid-sentence at the end because WT was just starting to go off track with listing 'helpful' stuff (some of which may indeed be helpful for individuals but lists like that have the very undesirable side-effect of diminishing the seriousness of ME in the mind of the general public)
 
Paywalled

https://www.nzdoctor.co.nz/article/educate/practice/polyvagal-theory-may-explain-chronic-fatigue-syndrome-and-its-treatment

Polyvagal theory may explain chronic fatigue syndrome and its treatment
13 December 2023
Bruce_Arroll_%202014.jpg

Bruce Arroll
Wednesday 13 December 2023, 12:25 AM
Woman_Sleeping_CR_Vladislav-muslakov_on_unsplash.jpg

The polyvagal theory explains how a person with chronic fatigue syndrome is caught in a state of freeze [Image: Vladislav Muslakov on Unsplash]
This article looks at the effective treatments for chronic fatigue syndrome and why the polyvagal theory explains CFS quite well
 
Dolphin said:
Paywalled
https://www.nzdoctor.co.nz/article/...in-chronic-fatigue-syndrome-and-its-treatment

Polyvagal theory may explain chronic fatigue syndrome and its treatment
13 December 2023
Bruce_Arroll_%202014.jpg

Bruce Arroll
Wednesday 13 December 2023
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NZ Doctor article said:
This article looks at the effective treatments for chronic fatigue syndrome and why the polyvagal theory explains CFS quite well. This Practice article has been endorsed by the RNZCGP and has been approved for up to 0.25 credits for continuing professional...
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Polyvagal theory! That's not even a proper hypothesis, let alone a theory. And the author of that "CFS explanation" is responsible for a good chunk of medical education in NZ (he's also a vigorous promoter of the Lightning Process). Just saying. And the RNZCGP endorses opining about polyvagal "theory" for CME credits :banghead:

Another article co-written by the same author (2022), this one looks to be about stress, he's clearly on a mission
2022 NZ Doctor article said:
Does polyvagal theory have any application in general practice?
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2022 NZ Doctor article said:
This article looks at polyvagal theory and how it can help patients presenting to primary care with physical symptoms relating to stress Key points , Polyvagal theory is organised around a hierarchical “autonomic ladder” with three discrete levels: ventral vagal, sympathetic and ...
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https://www.nzdoctor.co.nz/article/...-theory-have-any-application-general-practice (paywall)
 
Fundamental challenges and likely refutations of the five basic premises of the polyvagal theory (2023, Biological Psychology, paywall)

Additionally, a major limitation of the polyvagal conjectures, and in fact, all psychophysiological theorizing about the vagus and the psyche is the fact that there is, effectively, only one noninvasive and nonintrusive index of vagal activity, respiratory sinus arrhythmia (RSA), and that measure is only an imperfect and indirect marker of vagally mediated control of heart rate — but of no other vagally mediated processes [...] Nevertheless, RSA is the linchpin for almost all psychophysiological speculations regarding the parasympathetic system, and this is very true for polyvagal hypotheses.
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There is broad consensus among experts specialized in the vertebrate evolution of the autonomic nervous system, vertebrate evolution of sociality and neuroanatomy of the brainstem and the vagus nerve that each basic physiological assumption of the polyvagal theory is untenable.
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Polyvagal theory may explain chronic fatigue syndrome and its treatment (paywalled). I can't access this either, but the listed references are his usual go-tos: PACE, SMILE, NICE vs Anomalies. And # 7 is this nonsense. The NICE rebuttal can't come soon enough.

References
1. White PD, Goldsmith KA, Johnson AL, et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 2011;377(9768):823–36.

2. Casson S, Jones MD, Cassar J, et al. The effectiveness of activity pacing interventions for people with chronic fatigue syndrome: a systematic review and meta-analysis. Disabil Rehabil 2023;45(23):3788–802.

3. Crawley EM, Gaunt DM, Garfield K, et al. Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial. Arch Dis Child 2018;103(2):155–64.

4. National Institute for Health and Care Excellence. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. London, UK: NICE; 2021.

5. White P, Abbey S, Angus B, et al. Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis. J Neurol Neurosurg Psychiatry 2023; 10 July online.

6. McCrone P, Sharpe M, Chalder T, et al. Adaptive pacing, cognitive behaviour therapy, graded exercise, and specialist medical care for chronic fatigue syndrome: a cost-effectiveness analysis. PLoS One 2012;7(8):e40808.

7. Hasan Z, Kuyvenhoven C, Chowdhury M, et al. Patient perspectives of recovery from myalgic encephalomyelitis/chronic fatigue syndrome: An interpretive description study. J Eval Clin Pract 2023; 6 November online.
 
RNZ: Life with Long Covid - what it's really like
Living with Long Covid can be exhausting, painful and lonely, and most people do not know when their symptoms will improve.

More than 2000 people in New Zealand have registered as having Long Covid, while another 1200 have started the process to join the official registry.

It was set up by University of Auckland researchers to get a better understanding of how many people in New Zealand have the disease.

Those academics think around 10 to 20 percent of people infected by Covid-19 may go on to develop Long Covid, which means up to 200,000 could be suffering.

Every person with Long Covid has a story - here are a few to show what life with the disease can be like

...
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https://www.rnz.co.nz/news/national/505645/life-with-long-covid-what-it-s-really-like
 
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Watched this on Newshub last night. I am very disappointed with Prof Tate using the term Chronic Fatigue Syndrome. I agree ME/LC should have designated public clinics like in diabetic care - but not with all the rubbish he said has helped people including the dubious nutriceuticals and even worse - behavioural therapy. (I wonder which one he was thinking of? he seems to have endorsed a variety of them and they actively promote LP/the Switch at Otago Medical School). I don't see how his research will have any effect on health services as LC and ME continue to be swept under the carpet and appears to be solely in the domain of GP care and we have to fund any specialist consults.
 
Subtropical Island said:
Links between Chronic Fatigue Syndrome and Long Covid found
https://www.rnz.co.nz/national/prog...chronic-fatigue-syndrome-and-long-covid-found
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Dolphin said:
"Dunedin researchers reveal strong link between #longCOVID & #chronicfatiguesyndrome"

https://www.newshub.co.nz/home/new-...-long-covid-and-chronic-fatigue-syndrome.html
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Similar pieces also turned up on Newtalk ZB (interview) and in the NZ Doctor (article)

I don't know why this is getting so much traction right now. There doesn't seem to be any new paper since this December 2023 one. I suppose they may have chosen to delay the press release for it until after the holiday period or maybe some journalist belatedly stumbled on it only now
hibiscuswahine said:
Watched this on Newshub last night. I am very disappointed with Prof Tate using the term Chronic Fatigue Syndrome. I agree ME/LC should have designated public clinics like in diabetic care - but not with all the rubbish he said has helped people including the dubious nutriceuticals and even worse - behavioural therapy.
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Yes, that was a bit garbled. Hopefully the damage was limited, most people have no idea what behavioural therapies are and might remember the sciencey lab setting instead. Fortunately Tate expressed himself better in the NZ Doctor
NZ Doctor said:
Therapeutic targeting of the immune response/inflammatory pathways could be effective, Emeritus Professor Tate says.

“Currently, patients with ME/CFS and Long COVID will understandably clutch at any potential treatment suggested to find a better quality of life in the absence of defined treatments.
“That means often multiple drugs, nutraceuticals, cognitive therapies and relaxation strategies with possible crossover adverse effects are being tried at the same time, without resulting benefit to the patient in most cases.”

While potential compounds are available that target different points of the cellular energy production pathway, no systematic studies have been carried out to determine whether they show real benefit.
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Background: Good Sorts is a brief segment that runs once a week at the end of our most widely watched TV news programme and always features a warm, fuzzy feel-good story about individuals who do a lot for their communities. Good to see someone with severe ME portrayed in that context. Also good to see the carer's contribution acknowledged. Both of them come across as nice and relatable people who do the best they can in difficult circumstances, a most welcome change from being portrayed as either victims or activists

I was a tiny bit worried about viewers twisting it into 'If she can run a charity from bed why can't you work from bed' but so far the feedback seems to be mostly along the lines of 'Gosh, I had no idea ME could be so bad' so good job Wendy and Peter!
For a large part of the past three decades, Wendy Mathews has been in bed, and continuously for eight years.
“I don’t really get out of it, I’m here 24/7.”
She has myalgic encephalomyelitis (ME), a neuro-inflammatory disease that causes profound fatigue unaffected by rest.
But while Wendy is bed-ridden, she isn’t idle.
“Everything I have or need to do, I have to do here in bed.”
In 2017, Wendy created a charity called Rest Assured. It offers food deliveries, support, and comfort to those stuck at home with ME, chronic fatigue syndrome, or fibromyalgia.
[continues at link]
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https://www.1news.co.nz/2024/01/28/...-woman-helping-others-with-similar-condition/
Don't know how long this will stay up to watch
 
ANZMES announcement about World ME Day 2024
As we approach World ME Day on May 12th, 2024, ANZMES joins the global community in shedding light on the pressing issues surrounding Myalgic Encephalomyelitis (ME). This significant day coincides with the 55th anniversary since the World Health Organization (WHO) officially acknowledged ME in their International Classification of Diseases, underscoring the critical need to address this global health crisis.

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

No Cure, No Universal Treatment

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

[...]
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https://anzmes.org.nz/anzmes-a-globalvoiceforme-on-world-me-day-2024/
 
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