News from Aotearoa/New Zealand and the Pacific Islands

what I can't find are the studies in question, does anybody knows where can I find them? thanks!

 

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

 

thank you! I started reading it, this seems huge!

 

I believe these are the two recent studies...

• https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02533-3
• https://clinicalepigeneticsjournal.biomedcentral.com/articles/10.1186/s13148-020-00960-z

 

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

 

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.

 

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/

 

I seem to recall a post some time back that reckoned they were connected in some way.

 

This is the post I was thinking of:

https://www.s4me.info/threads/how-t...ed-best-practice-protocols.13654/#post-303128

 

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/

 

I like @Carolyn Wilshire's comment, my bolding:

 

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.

 

Although the SMC NZ was established independently of the SMC UK, they are connected, in that both are part of an international alliance of SMC's, which includes some other countries too (South Africa comes to mind, but I can't remember which else).

 

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.

 

For the Big Ideas Forum:

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

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

https://www.healthychristchurch.org.nz/news/vacancies/2021/1/manager-needed-at-mecfs-canterbury

 

Some advice for ‘long Covid’ sufferers, from the chronic fatigue community
Hannah Gibson | Guest writer
Understanding the connection between chronic fatigue syndrome and ‘long Covid’ might be helpful in treating symptoms that doctors will find all too easy to dismiss.

https://thespinoff.co.nz/society/17...sufferers-from-the-chronic-fatigue-community/

 

$10,000 BayTrust grant offers lifeline to chronic illness charity

https://www.nzherald.co.nz/rotorua-...c-illness-charity/GA7QYCE2V3Y4QIII3M6FDWSHT4/

 

This Otago Daily Times article was from a few days ago... 14th Jan
Post-viral illness thrust centre stage
https://www.odt.co.nz/opinion/post-viral-illness-thrust-centre-stage