News from Aotearoa/New Zealand and the Pacific Islands

Is there a transcript or slideshow version? (I’m very interested to understand this topic better and I just can’t manage to listen to this)

 

There is a slide deck linked to in the description of the video

 

Another, more detailed, news article about the interim data coming out of the NZ Long Covid registry study

Not just the doctors not taking them seriously

https://newsroom.co.nz/2023/11/17/this-isnt-a-life-the-crushing-burden-of-long-covid/

 

Oof. That’s bad.

 

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

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″

 

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
Wednesday 13 December 2023, 12:25 AM

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

 

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

Another article co-written by the same author (2022), this one looks to be about stress, he's clearly on a mission

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)

 

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

https://www.rnz.co.nz/news/national/505645/life-with-long-covid-what-it-s-really-like

 

Brief intro to some apparently newly published (Dr Warren Tate Otago University) research (will have to check elsewhere to see what it is as the article gives very little info)

Links between Chronic Fatigue Syndrome and Long Covid found
https://www.rnz.co.nz/national/prog...chronic-fatigue-syndrome-and-long-covid-found

(I came here to find out more myself)

Copied to the thread on the research

 

2-minute video piece plus text that is somewhat similar to a transcript

"Dunedin researchers reveal strong link between #longCOVID & #chronicfatiguesyndrome"

https://www.newshub.co.nz/home/new-...-long-covid-and-chronic-fatigue-syndrome.html

 

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.

 

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

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

 

Press release that has led to a lot of media coverage in New Zealand
"Strong links found between #LongCOVID and ME/CFS: Otago study"
https://www.eurekalert.org/news-releases/1032051

 

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!

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

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

 

An impactful statement. I feel it.