News from New Zealand and the Pacific Islands

Hutan · May 19, 2018

The News from Scandinavia is such an interesting and useful thread, so I thought it could be worth seeing if we could sustain a similar one for New Zealand. We do have some good research being done, some active advocates and even a suggestion from David Tuller that he might get here in the next year.

I'm not very linked in to what is going on in New Zealand, but would like to be. I know we have quite a few NZ members - so, please let us know about events, advocacy, articles, treatment guidelines, research, anything ME/CFS related in New Zealand.

Ravn · May 19, 2018

Nice idea @Hutan.

Always impressed by how much news there's coming out of Scandinavia. I fear there'll be a lot less from NZ but then Scandinavia spans several countries, NZ only the one. Incidentally, do we have any Pacific Island members, resident in NZ or the islands? Would be interesting to get your perspective, too.

But here's a collection of a few existing NZ threads to get started (result of a quick search so probably have missed some, let me know and I'll add them.)

https://www.s4me.info/threads/go-slow-a-cfs-like-disease-of-dogs.1063/#post-17954

https://www.s4me.info/threads/hodge...s-following-repeated-exercise.860/#post-14566

https://www.s4me.info/threads/im-not-looking-for-pity-just-a-cure-nz-article.4100/

https://www.s4me.info/threads/video...rt-of-the-circle-of-strength.3392/#post-60305

https://www.s4me.info/threads/me-in-the-star-dunedin-nz-featuring-local-research.4139/

https://www.s4me.info/threads/video...to-me-cfs-11th-november-2017.1271/#post-21661

https://www.s4me.info/threads/phd-t...n-a-me-cfs-pilot-study-group.2288/#post-41620

Hutan · May 19, 2018

Thanks for the threads @Ravn.

Ravn said: ↑

Incidentally, do we have any Pacific Island members, resident in NZ or the islands?
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Good idea. In the spirit of geographic empire building, I've changed the thread name.

Hutan · May 20, 2018

The bad news is that it's pretty hard to find much about ME/CFS in the Pacific Islands. The good news so far is this:

Infectious diseases of Fiji: 2018 edition. Dr S. Berger

Infectious Diseases of Fiji is one in a series of GIDEON ebooks which explore all individual infectious diseases, drugs, vaccines, outbreaks, surveys and pathogens in every country of the world. Data are based on the GIDEON web application (www.gideononline.com) which relies on standard text books, peer-review journals, Health Ministry reports and ProMED, supplemented by an ongoing search of the medical literature.
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GIDEON is the premier medical decision support web application and ebooks series covering infectious diseases and microbiology.
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So presumably this is a resource for medical personnel, and the content is cut and pasted into ebooks for many countries. (Edit: for example, the same material appears in the Vanuatu edition).

The forward notes that Chronic Fatigue Syndrome has been included because, while the cause is not known, Infectious Diseases specialists often see people with the illness.

The entry for ME/CFS (page 147) is actually headed 'Myalgic encephalomyelitis' (!!) with synonyms 'Chronic Fatigue Syndrome' and 'Systemic Exercise (sic) Intolerance Disease'.

Other information in the brief entry includes:

Agent: Unknown
Diagnostic tests: Clinical diagnosis i.e. discount other diseases
Typical adult therapy: Supportive; ?immune modulators (experimental)
Clinical hints: - Unexplained depression, fatigue, cognitive disorders and sleep disturbance
- Recurrent bouts of pharyngitis and adenopathy
- Rheumatological symptoms and fever persist more than six months
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It's an interesting representation of ME/CFS, but not wholly bad. There is no mention of CBT or GET or MUPS.

Hutan · May 20, 2018

An article
The illness people can't see: living with Chronic Fatigue Syndrome
by Hannah Gibson

It's in The Spinoff, an online magazine, fairly major for New Zealand. It claims to have a readership of 700,000 unique readers per month.

Although symptoms can be seen by those who really look, they are made invisible by two things. Firstly, as for other invisible complex chronic illnesses, the experience of suffering is often ignored because there is no observable clinical evidence to legitimise it. When investigated, tests show unremarkable findings, or ones that don’t fully explain the full extent of symptoms. Spending most of your time in hospital or in a doctor’s office to then be told ‘nothing is wrong’, as many people experience, is just as hard to accept as the illness itself. We know something is wrong.
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It mentions the IOM report and Unrest.

alktipping · May 20, 2018

that is the best article I have read about m e .I have shared it on facebook it is refreshing to read an article that is so well written by a patient with m e without any referrals to the psychology bs we get in the English press .

Hutan · May 20, 2018

A short article in Stuff (major online news service)
Waking up tired and in pain. A teenager's life with Myalgic Encephalomyelitis.
6 May 2018 by Jared Nicoll

Myalgic Encephalomyelitis is referred to in a lot of circles as Chronic Fatigue Syndrome, but Featherstone-Wright says that name causes a lot of problems.

One is because people use it to imply the disease is psychosomatic, and not real.

"The other reason is fatigue is not the only symptom. It's not even the defining symptom of ME. It's really a lot like calling a pie a crust," she said.
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This one precedes the May 13 2018 Stuff article discussed in this thread
https://www.s4me.info/threads/im-not-looking-for-pity-just-a-cure-nz-article.4100/

This one does not have comments.

Ravn · May 21, 2018

Hutan said: ↑

A short article in Stuff (major online news service)
Waking up tired and in pain. A teenager's life with Myalgic Encephalomyelitis.
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The mother of the teenager described in the article has co-founded a Facebook support group, NZcare4ME, including a closed group for carers of kids with ME. The open portion of the group's page looks quite good for general ME info in NZ (not just for carers) so could be worth following for Kiwis on Facebook.
https://www.facebook.com/NZcare4ME

Ravn · May 21, 2018

From the May 2018 MEISS (ME Information and Support Services, Otago & Southland) newsletter:

MEISS AGM Just letting you have the date and speaker early so you can mark on your calendar On Saturday November the 24th at 1pm the MEISS AGM will be held at Community House. Our guest speaker is going to be Doctor Katherine Hall and hopefully Prof Warren Tate. Katherine will be speaking about the latest research that is going to be starting in Dunedin possibly early next year. There are several Doctors involved in this research including Prof Warren Tate’s team. Warren will be updating where his research is at.
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I expect there'll be a report on the meeting and talks in a future newsletter but if anybody happens to be going let us know your impressions.

The research mentioned above may or may not relate to what Prof. Tate recently wrote in The Star (thread and full text here https://www.s4me.info/threads/me-in-the-star-dunedin-nz-featuring-local-research.4139/)

My own research group at the University of Otago has been conducting preclinical molecular studies on ME/CFS patients, and has identified that compared to healthy people, they have increased inflammatory processes, immune system dysfunctions, and importantly compromised energy production.

Our new information complements the landmark study by scientists from Stanford University in the United States who examined the small molecule ‘debris’ in blood plasma of ME/CFS patients that results from their body’s metabolism.

My research group in 2018 has interest in several possibilities for the primary cause of the jamming of the disease ‘on switch’- the energy power-houses of all cells, called mitochondria, the human ‘stress centre’ that is found in a part of the brain, called the hypothalamus, and potentially changes in a what is known as the ‘epigenetic code’ in our DNA

Our latest research has highlighted possible new candidates for a diagnostic test, but critically these changes must occur in all patients regardless of severity of the illness, or differing modes of onset.
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Ravn · May 24, 2018

In the Otago Daily Times: Shedding light on an invisible illness by Jean Balchin

Well written, as Jean's column always is, apart from a lack of consistency in terminology, a merry mix of CFS, ME and ME/CFS.

It all started with a headache. My skull throbbed, and every joint felt like it was encased in hot lead armour. I didn't know it at the time, but I had a pretty bad case of glandular fever.

Evidently my tendency to kiss strange boys in nightclubs had caught up with me. Most people suffering from glandular fever feel better after six weeks or so. It's been three and a-half years, and I still feel like I'm trudging through Chelsea golden syrup, with my battery on 10%, and my mind thick and foggy.

For the last three and a-half years, I've been shuffled from doctor to doctor, and have been poked, prodded and prescribed all number of different ''remedies'' for my strange condition.
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Full article here: https://www.odt.co.nz/opinion/shedding-light-invisible-illness

Ravn · May 26, 2018

Whatever is happening at the Otago Daily Times? They completely ignored ME awareness day but suddenly, this week, ME gets a lot of column space. First Jean Balchin's column a couple of days ago about her own recent diagnosis and now today a big feature in the business section, of all places.

Unfortunately only one of the articles is online (see below). The paper edition also has the obligatory fact box of symptoms plus another article on Prof Tate's research group, covering the recent arrival of a Seahorse Analyser, a study looking at the effect of MitoQ on immune cell energy levels (that'll explain the business section placement I suppose), and a study looking at social issues for patients.

Thousands of New Zealanders cannot work or live normal lives because of a disease difficult to diagnose and nearly impossible to treat. University of Otago professor of biochemistry Warren Tate explains to business editor Dene Mackenzie how he continues to search for a better future for sufferers of chronic fatigue syndrome.

Passionate and parental are two words which can be adequately ascribed to University of Otago professor of biochemistry Warren Tate.
Faced more than 25 years ago with a 14-year-old daughter who suddenly went from a vibrant and energetic girl to being mainly bedridden, he had a moment.
There was such a dramatic change in the health of his daughter Katherine, he was left wondering what had happened.
"This is fatigue like I have never seen before. My daughter would go from the bed to the shower, sit down in the shower, go back to bed and take three hours to recover from that.
"The natural instinct of a parent is worry and concern, but as a medical professional used to dealing with the system, I was frustrated."
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Full article here: https://www.odt.co.nz/business/set-quest-treat-me

Helen · May 26, 2018

Ravn said: ↑

The paper edition also has the obligatory fact box of symptoms plus another article on Prof Tate's research group, covering the recent arrival of a Seahorse Analyser, a study looking at the effect of MitoQ on immune cell energy levels...
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I´m very interested in Prof. Tate´s research. Is there a way for you to share parts of the article that you mention above? Unfortunately I couldn´t read the added page in your other thread as the letters were too blurred when I enlarged the text. Maybe I missed a trick to make it better. BTW, I´m glad to see that ME seems to get more attention in your area as well.

Cohen · May 26, 2018

Helen said: ↑

I´m very interested in Prof. Tate´s research. Is there a way for you to share parts of the article that you mention above? Unfortunately I couldn´t read the added page in your other thread as the letters were too blurred when I enlarged the text. Maybe I missed a trick to make it better. BTW, I´m glad to see that ME seems to
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https://www.odt.co.nz/business/hope-antioxidant’s-effects-energy-production

Ravn · May 26, 2018

Thanks @Cohen for posting that second ODT article. I couldn't find it when I was looking for it yesterday. Maybe they added it later. I'm sure the “Chronic symptoms” [sic] fact box wasn't there either when I last looked, but now it has appeared at the bottom of the 'Set on a quest to treat ME' article previously posted (https://www.odt.co.nz/business/set-quest-treat-me).

@Helen - As for the earlier Star article, I appear to have deleted the email they sent me with the scan, sorry. You could try contacting them at circulation@alliedpress.co.nz. Maybe they can send you a better scan or a text file. They were very helpful to me at any rate. It's the 15 May edition, pages 22-23 you're after.

Hutan · Jun 17, 2018

The Royal Australasian Congress of Physicians held their annual congress in May and had a session on Medically Unexplained Symptoms.
https://www.racp.edu.au/fellows/resources/congress-presentations-2018

More information on this thread.
Includes presentations from two NZ doctors; Dr Ros Vallings and Dr David Beaumont.

Ravn · Jun 18, 2018

From an announcement by the Community Health Council (CHC) - which covers the Southern District Health Board area, I don't know if other areas have similar initiatives.

Not ME-specific but there may be an opportunity here for some input?

the CHC is encouraging people to become involved with decision-making and influencing the health system at Southern […] There are a number of new opportunities for people to get involved [...]

Patient Stories
This is a new piece of work focussed on collecting Patient Stories from people based on their experiences in the health system– they are a powerful tool used for both staff education purposes and also for raising issues with the general public. If you have a story and wish to tell it or support a whānau/ family member in sharing their story please contact communications@southerndhb.govt.nz - your story will only be shared through the channels you wish it to be shared.
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Some of the stories can be seen here, all are short videos, around 2 minutes long https://www.southerndhb.govt.nz/pages/patient-stories/

The videos are of the feel-good variety, all about how wonderful the healthcare received was, but some also include a little bit about what it's like to live with their respective conditions. I could be wrong but I doubt they'd want to put negative stories on. However, if there's anyone in the region who actually has a positive story and is willing to tell it, plus how hard it is to live with ME (all in 2 minutes!), maybe that could encourage some other health professionals to approach ME patients in a positive way, too?

There's also this:

Sign up as an Advisor
Since our last People’s Caucus the CHC has worked with the DHB and WellSouth to create a systematic process whereby healthcare staff are strongly encouraged to involve community, whānau and patients in decision-making from something as small as developing an information sheet for a patient and family member through to longer-term projects focussed on the re-design of services. During our recent forums we provided some examples of projects CHC members have been involved with but we need more community, whānau and patient representatives to be on a database that the CHC would call on as people are required.
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Contact chc@southerndhb.govt.nz for more info or if you want to be involved as an advisor.

Note for non-Kiwis: whānau is the Maori word for (extended) family.

Hutan · Jun 30, 2018

You and ME: An Update on Myalgic Encephalomyelitis for Psychologists by Rose Silvester posted by @Indigophoton here.

Superb article for psychologists originally published in the June 2018 edition of the Journal of the New Zealand College of Clinical Psychologists (NZCCP). In the course of her research, the author spoke to @Carolyn Wilshire.
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Ravn · Jul 5, 2018

Article in a small, local (I think, not my region) North Island newspaper: https://www.theweekendsun.co.nz/news/4395-burning-candle-at-both-ends.html
Bit of a mixed bag, here's a sample:

Chronic Fatigue doesn’t have that magical white pill and often falls through the mainstream medical cracks.

“No one knows exactly what causes chronic fatigue and everyone experiences it in different ways,” says Kira.

“For me, my brain was quite shut down, but when I did come to life to some extent it was like the living dead. When I was with it I was concerned about my children the most.”

When her brain started to come back, she connected with other people online and that’s where she learned that people from all around the world had recovered from the illness.
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Pointing readers to this website for more information: https://ccisupport.org.nz/ which also seems a bit of a mixed bag, with some sensible information but giving a rather too optimistic impression of chances for recovery, possibly unintentionally. The expression "Towards Wellness Programme" is a little ambiguous.
It's also not quite clear to me if they're a charity. Does anyone know them?

Daisybell · Jul 5, 2018

They’re in the Bay of Plenty.
I’ve chosen not to join....like you, I have reservations about some of their information. They are a charity. Recently renamed chronic complex illness support - used to be ME/CFS Bay of Plenty.
It makes me wary when the employee has ‘recovered’.....

It would be my local support group.

Hutan · Jul 6, 2018

When I went to Tauranga for a Massey CPET study, I stayed across the road from the office of the CCI because I think initially the study's mobile CPET unit was going to be parked there. Anyway, I had time to fill in between the CPET tests so I called in to see this organisation, a bit hopeful that they might have some information about support for my son's education.

The office is up a flight of stairs which wasn't a great start. I wasn't able to extract any useful information out of the person. The person was pleasant enough and gave me a brochure. The focus was definitely on being positive and heading towards recovery. I see they list anxiety and irritability as symptoms of Chronic Fatigue Syndrome. I did feel irritable by the time I left.

Yes @Daisybell, if I lived near Tauranga, I don't think I'd be bothering with them. It's disappointing.

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