News from Aotearoa/New Zealand and the Pacific Islands

Andy said:
This is the latest study from Tate, so I would guess this is what has inspired the latest publicity, Changes in DNA methylation profiles of myalgic encephalomyelitis/chronic fatigue syndrome patients reflect systemic dysfunctions, Helliwell et al 2020
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I think all the publicity came out of the Brain Health Research lecture. I know they were trying to get the press interested at the time but it took a while to catch on. Until it got on breakfast television that is, and then the others had a moment of FOMO or something.

Here's another (short) article. The journo must have read my complaints about the headlines - this one's an improvement: Dunedin researchers break ground on ME/CFS - but then sadly ignored my advice against overly focusing on the psychological vs biological debate. Ah well.

https://www.odt.co.nz/news/dunedin/researchers-break-ground-mecfs
 
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Ravn said:
I think all the publicity came out of the Brain Health Research lecture.
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I noticed that the NZ Doctor article was tagged as an 'Otago University press release', so maybe that is what got the mainstream press interested? And Otago Uni probably thought it was worth doing the press release because of the BHRC 2020 lecture?
I might make a few enquiries to find out the chain of actions, so that we can learn about how we can improve & trigger press coverage.
 
John Mac said:
Expert reactions from the Science Media Centre in New Zealand on the Tate study.
Presumably a different organisation from the UK one.

Researchers claim proof chronic fatigue syndrome is a bodily disease – Expert Reaction
https://www.sciencemediacentre.co.n...syndrome-is-a-bodily-disease-expert-reaction/
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Kalliope said:
Comments from Associate Professor Tony Hickey, dr. Carolyn Wilshire, dr. Lynette, Hodges. Dr Rosamund Vallings and dr. Hemakumar Devan
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S4ME threads on the referenced studies:

https://www.s4me.info/threads/a-swa...-sweetman-vallings-tate-et-al-aug-2020.16386/

https://www.s4me.info/threads/chang...emic-dysfunctions-helliwell-et-al-2020.17624/
 
John Mac said:
Expert reactions from the Science Media Centre in New Zealand on the Tate study.
Presumably a different organisation from the UK one.

Researchers claim proof chronic fatigue syndrome is a bodily disease – Expert Reaction
https://www.sciencemediacentre.co.n...syndrome-is-a-bodily-disease-expert-reaction/
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I like @Carolyn Wilshire's comment, my bolding:
“This uncertainty about the causes of ME/CFS has led to speculation that it may be ‘psychosomatic’. Some psychiatrists and psychologists have claimed that patients’ attitude and behaviour is at fault, and that with the right ‘coaching’ (psychotherapy or exercise), they can fully recover. However, no such treatment has been shown to cure the illness, or even lead to sustained improvement. Indeed, few people with ME /CFS ever regain their previous levels of functioning. In my opinion, there is simply no support at all for the ‘psychosomatic’ view, let alone a need to disprove it.
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Ravn said:
I like @Carolyn Wilshire's comment, my bolding:
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Indeed, that was my reaction to seeing this headline: there is no need to disprove it is psychosomatic because such a thing has never been proven.

Yet in a way it has to be argued, there is a political element, but this is right in line with: NASA shows the Moon is NOT made of cheese.

Of course that's where the whole horseshit about a "complex interplay of mind and body" come into play, pretending they don't mean the things they say and they don't mean "fully" psychosomatic but frankly that's arguing whether only some part of the Moon is made of cheese, same argument in the end.

The people making those claims have no clue what they're talking about. What they have is confidence in their beliefs and the influence (and lack of integrity) to push their own opinions and beliefs into clinical practice, based on nothing but their convictions.
 
I came across this virtual conference in March 18th - 19th March.
CHF (Consumers Health Forum) Virtual Summit 2021: Shifting Gears
Australia and New Zealand Consumer Experience and Leadership in Health Summit
http://www.chfsummit.com.au/ehome/index.php?eventid=518286&

The conference invites consumers to attend and give input (125 free registrations available). A two /three day event would be hard for someone with ME/CFS, but could be selective about sessions attended?
Could also be interesting for anyone involved in community health care for people with ME/CFS - as it focuses on codesign of services etc.
NZ stream content not in programme yet.
Too late for abstract submissions but a Big Ideas Forum might still provide a platform.

Good to see consumer voice is being actively encouraged for health service design /delivery. Shame we often hear about these events too late for targeted involvement.
 
RoseE said:
Too late for abstract submissions but a Big Ideas Forum might still provide a platform.
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For the Big Ideas Forum:
We are inviting you to send in videos of your ideas for innovation in health, to be part of the Big Ideas Forum at our CHF Shifting Gears Summit in March 2021. Entries will close in mid-November.
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http://www.chfsummit.com.au/ehome/518286/bigideasforum/

But there are several "panel discussions with live Q & A" after the various live streams, for registered participants only presumably.

Not sure how I feel about the term consumer in this context but apart from that the whole thing sounds super interesting. Alas, light years outside my energy envelope. Some topics:
  • Experienced Based Co-Design (EBCD)
  • Consumers as Researchers
  • Consumer-Based Health Care
  • Consumer Leadership
  • Consumer Enablement
Full programme here: https://na.eventscloud.com/file_upl...ded8e_CHFSummit2021-Program21December2020.pdf
RoseE said:
Good to see consumer voice is being actively encouraged for health service design /delivery. Shame we often hear about these events too late for targeted involvement.
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Ironic, too, that they always organise things in a way that excludes many "consumers". A little while ago I had a long back and forth with my local District Health Board about joining their patient advisory council but they just couldn't/wouldn't adapt their way of working to accommodate my needs. "Consumer enablement"? Whatever.
 
Manager needed at MECFS Canterbury
Thursday, January 14, 2021
Are you a Health Practitioner looking for a pivotal part time leadership role? MECFS Canterbury is looking for a manager to assist the organisation in making a difference for people with Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS).

Can you help MECFS Canterbury make a difference for the estimated 2,200 people (including 300 young people) living with ME/CFS in Canterbury?

Apply for this position if you are keen to:

  • Tell the stories of the ME/CFS community in a way that engages health professionals, funders and the wider community;
  • Help develop an innovative strategy for sustainable, appropriate services;
  • Build a vibrant team of staff and volunteers; and
  • Lead the operational, quality, and financial aspects of the organisation proficiently and with flair.
This manager role offers:

  • Part time hours - initially 10 hours per week, with a likely future option to increase hours;
  • Flexible days and hours of work - with the exception of a couple of fixed monthly meetings;
  • The ability to work from home or at a hot-desk at Christchurch Community House and elsewhere; and
  • A position that you can bring your passion to – that is not restricted by the hierarchy of some larger organisations.
MECFS Canterbury would love to hear from you if this opportunity appeals and you have relevant experience and qualifications for the health and disability sector.

Please send your CV and a covering letter by 8am on Monday 25th January 2021 to Chairperson Rose Camp (rose.camp[at]mecfscanterbury.nz).

View a position description for this manager role.

Salary range is $58,000 to $80,000 full time per annum, and will be paid pro rata for the hours worked part time. Hourly rate range is $28 to $40 per hour, dependent on experience and capabilities of the successful candidate.

Note: You must have NZ residency or a valid NZ work visa, a vehicle and drivers license, and be prepared to undergo police vetting to be eligible for this position.
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https://www.healthychristchurch.org.nz/news/vacancies/2021/1/manager-needed-at-mecfs-canterbury
 
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$10,000 BayTrust grant offers lifeline to chronic illness charity
A Bay of Plenty charity that helps hundreds of locals cope with chronic fatigue and pain will receive a $10,000 grant from BayTrust to ensure their doors stay open in 2021.

Complex Chronic Illness Support Inc (CCIS) will celebrate its 40th anniversary this year but securing funding for operational costs is an ongoing battle, operations co-ordinator Miranda Whitwell said.

"This funding makes a massive difference. It means survival. Our field officers are funded but this money helps keep our doors open so we have somewhere for people to meet. It pays for the photocopying, our computers and the internet – all those important bits without which our field officers can't do what they do and help our clients."

CCIS was currently supporting 249 Bay of Plenty residents and their families to cope with chronic illnesses such as post-viral fatigue syndrome, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, orthostatic intolerance and postural orthostatic tachycardia syndrome (POTS), with thousands more in the community likely to be undiagnosed and in need of support.
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https://www.nzherald.co.nz/rotorua-...c-illness-charity/GA7QYCE2V3Y4QIII3M6FDWSHT4/
 
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