News from Aotearoa/New Zealand and the Pacific Islands

RoseE said:
Apologies for the late notice...

All are welcome to ME Auckland's online AGM tomorrow (Sat, 10th Oct 1:30pm), that will include a presentation by guest speaker Dr Lynette Hodges.

Dr Hodges is a Senior Lecturer, School of Sport, Exercise and Nutrition, at Massey University, NZ and undertakes research into exercise and post-exertional malaise in #MECFS (Myalgic Encephalomyelitis /Chronic Fatigue Syndrome).

The talk will be held via Zoom. Simply click the link below to join (if joining from mobile, it may ask you to download the Zoom app).
Details below
https://us02web.zoom.us/j/87641407370
Meeting ID: 876 4140 7370

This event is organised by the team at www.meauckland.org.nz.
There are plans to release a recording of Dr Hodges presentation.

View attachment 12185
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wasn’t able to make it. How’d it go?
 
RoseE said:
a presentation by guest speaker Dr Lynette Hodges.

Dr Hodges is a Senior Lecturer, School of Sport, Exercise and Nutrition, at Massey University, NZ and undertakes research into exercise and post-exertional malaise in #MECFS (Myalgic Encephalomyelitis /Chronic Fatigue Syndrome).
Click to expand...
The talk is now available on Youtube (haven't watched it yet).




The discussion about this video continues here:
New Zealand Video: Exercise and ME/CFS, 2020, Lyn Hodges
 
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Some good news... The Massey University Foundation has set up an option on their donations page to allow people to donate to Dr Lynette Hodges research into ME, PEM and exercise.

Go to https://foundation.massey.ac.nz/donate-online
To donate to Dr Hodges work – in the drop down for 'Select Fund' click on ‘Dr Hodge’s ME Research’.
You will receive a tax receipt by email instantly if you choose to give online.
 
The 2020 Brain Health Research Centre Lecture
Emeritus Professor Warren Tate will present the 2020 BHRC Lecture, entitled "Understanding the biological basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and its sudden increase in public profile with COVID-19"

Monday, 23 November 2020
Time 2:00pm - 3:00pm
Audience Public,All University,Alumni,Staff,Postgraduate students
https://www.otago.ac.nz/news/events/otago746991.html

Mod note: a thread has been made for this lecture here:
NZ: The 2020 Brain Health Research Centre Lecture - Professor Warren Tate - 23 November 2020
 
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Snow Leopard said:
Has anyone watched this? A concise summary would be much appreciated.
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Mostly about validating ME.

Part of it was Ritchie (former league star, ANZMES ambassador or something in that line) telling his story. 12 years ill, well the last 4 years. Explained how he was affected and how there was no help for him at the time. A bit too much emphasis on healthy living and positive thinking for my liking but in fairness it was in the sense of looking after yourself while ill so you don't feel even worse than you already do, not in any way curative, but I fear that sort of nuance may have bypassed most Breakfast viewers.

Prof. Tate's bit would have gone straight over the head of most viewers, too. He briefly discussed his team's recent two papers, one on mitochondrial function the other on epigenetic changes. Nothing new in there for us. Hopefully it left the general impression that ME should be taken seriously and the underlying biochemistry studied.

He was clear that there was no immediate clinical applicability beyond validating patient experience but used Ritchie's recovery/remission as an example that ME should be reversible while stressing that Ritchie is the exception and 95% don't recover.

To further confuse the poor viewers the presenter kept talking about Chronic Fatigue Syndrome and Prof. Tate about ME with neither explaining the discrepancy.

In short, awareness raising as much as anything.
 
There's going to be an item on 'Chronic Fatigue Syndrome' on Radio New Zealand in the next hour or so. It was introduced as 'Chronic Fatigue Syndrome has been thought of as being all in the mind, but now some University of Otago researchers have proved that it is very real'.
 
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Radio New Zealand item:
Host of the show called 'The Panel' introduced the item as 'CFS' and said it's not psychosomatic.

Warren Tate spoke - mentioned that it typically follows an infectious disease, mentioned that people infected with Covid-19 are developing the symptoms.

He referred to ME/CFS, mentioned his daughter who got it when she was 14, and still has it 30 years later. He talked about, when she first got it, how she could only walk for five or so steps and then would have to lie down and rest.

In response to a question about diagnostic tests, Warren said that his team have piloted a test that shows promise. He said that a scientist in the US has developed a test based on electrical impedance in serum, but there is no test based on biological molecules.

He then talked about ME. Stigma was mentioned, 'even today people can go to their health practitioner and not have their illness validated
He talked about an acute phase - when people are often bedbound - for 3 or 4 years, then a chronic phase. (That's the first I have heard of those phases, it doesn't match my family's experience.)

In response to feedback from listeners, the host asked him to explain what ME is. Warren explained and said that CFS originated in the US and is not a favoured term, so now a compromise term, ME/CFS is used. (Even so, the host still called the illness CFS at the end).

One of the panel members said that a young member of their team had got ME/CFS, and he had been terribly sick. He had been in a flatting situation, and his work colleagues had taken him breakfast, lunch and dinner because he was so sick.

The other panel member said, just after the item, ' that was really enlightening, I had no idea how serious it was'. And the first panel member chimed back in, reiterating how bad it is. The host read out some responses from listeners, including one from a woman whose husband is now in a wheelchair as a result of ME/CFS.

So, a few things (the technical things) I'd quibble with, but in terms of awareness raising, it seemed to do the job very well.
 
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Hutan said:
Warren explained and said that CFS originated in the US and is not a favoured term, so now a compromise term, ME/CFS is used. (Even so, the host still called the illness CFS at the end).
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Snow Leopard said:
Sigh.
When will the media learn how inappropriate this is?
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After explaining where the terms ME and CFS had originated Prof Tate actually said, with emphasis, that patients hated the CFS one because it minimised the disease. Doubly disappointing - disrespectful one could argue - that the host continued using CFS after that.

Otherwise it was a pretty good interview though, now available here:

https://www.rnz.co.nz/national/prog...34/chronic-fatigue-is-not-psychosomatic-study
 
The man appears to have achieved a state of omnipresence. Here's yet another article, this one a little bit different from the others which were basically a direct copy-paste of a University of Otago press release. Also has a slightly cringe-making, if largely harmless, American video inserted.

https://www.stuff.co.nz/life-style/...chronic-fatigue-syndrome-is-not-psychosomatic

All that publicity is good and I haven't got any major issues with any of the content but hmm, not really sure about the wisdom of the strategy here. Clearly the intention is to give the spectre of psychosomatics a well-deserved and long overdue knock-out blow but, tactics, people, tactics. All those headlines shouting 'Chronic Fatigue Syndrome' and launching straight into the psychosomatic debate - if you really want to activate every prejudice a reader might harbour before they even start reading, that's the way to do it. And once you've so forcefully reminded them of their prejudices it's much more difficult to get them to change their views, no matter how good your argument.

Why not structure the same content something like this:

{clickbait for a headline} Scientist father working to solve daughter's disease

{emotional hook into story} When daughter fell severely ill with Myalgic Encephalomyelitis and suffered [insert a few bad symptoms] no help could be found so her scientist father set out to find a solution.

{dazzle reader with science, do not mention psych-anything here} Now his studies have found the following biological/epigenetic/molecular ...

{later in the article acknowledge psych history but immediately drown it out with 'we know better now'} Funding was hard to come by due to lack of knowledge leading to the disease being misclassified as psychosomatic and renamed as CFS, a name which is rejected by patients as not reflecting their disease which ... [explain key symptoms, esp. PEM & severity]

{conclude without any more mention of psych-anything, leave the reader with a last impression of the need for biomedical research} This research has contributed to a better understanding of ME and may eventually help with finding effective treatments or even a cure but more funding is needed to continue the work.
 
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