News from Aotearoa/New Zealand and the Pacific Islands

[duncan]

This doesn't qualify as news, so I hope no one minds, but it is specific to Pacific Islands.

Does anyone remember the Hong Kong flu from the late '60's? Lots of people all around the world got sick with it. Many died.

I was living in the Marshall Islands in the late '60's. In '68, basically 75% of the Atoll got very sick, myself included. It was pretty bad. Some Marshallese died.

To cut to the chase, it turns out that in '68, the US may have experimented with an aerosoled germ agent on the Marshall Islands. Don't know if it's true, but I've seen a couple sources recently that referenced the experiment/test. I cannot help but wonder if what I was sick with was not the Hong Kong flu.

Nothing to do with ME/CFS, but the kid in me 50 years later kinda likes the cool factor - even though it was most likely just the Hong Kong flu that had me puking and wishing I were dead for close to a week, and not an "I Spy" subplot.

 

[chrisb]

I was living in the Marshall Islands in the late '60's. In '68, basically 75% of the Atoll got very sick, myself included. It was pretty bad. Some Marshallese died.

Wiki gives this regarding Project SHAD

With boat crews in sealed quarters, an airplane sprayed the path with the select agents F. tularensis and Coxiella burnetti (the cause of Q fever). Four years later, in 1968, a similar US test was conducted near Eniwetok, another Pacific atoll, using Staphylococcal enterotoxin B, a cause of debilitating illness. The tests were part of Project SHAD: Shipboard Hazards and Defenses.

EDIT the F stands for Franciscella. The bacterium is the cause of tularemia, an often fatal condition if untreated.

 

[duncan]

Eniwetok is a Marshall Island! It's like living in a Tom Clancy novel, in a silly and not-so-much kind of way.lol

The US did a lot of Biowarfare research through the '50's and '60's. Ironically, supposedly Nixon put a stop to it around 1970 - but I don't think anyone really believes it's stopped. It's just not officially sanctioned I suppose.

 

[rvallee]

Oh dear, a new lightning process promoter has just started up, based in Christchurch and advertising Lightning Process courses in Christchurch and Dunedin.
https://www.neurospark.co.nz/faq



I have heard that she will be speaking with the Burwood Pain Clinic (public health system clinic) next week.

@dave30th, another notch on the "LP is backed by published research" belt. Predictably that was the aim, for the circular reasoning to build upon itself.

 

[rvallee]

The forgot to mention the bit where you have to believe in pseudoscientific nonsense.

Totally not a cult, though.

 

[Ravn]

The forgot to mention the bit where you have to believe in pseudoscientific nonsense.

Or maybe they just felt "a fresh and new way" sounded more convincing than "pseudo-scientific"?

The main requirement is that people who take on the training must be ready to look at their condition in a fresh and new way.

 

[Subtropical Island]

Just sharing the list of posts made on facebook for the MillionsMissing campaign just run by ME Awareness NZ.
This includes stories from people with ME in NZ, and a few lessons about what me is, the history of the name, difficulties obtaining health support, etc.
We had a different theme /slogan for each of the eight days.

It was a public awareness campaign for NZ, but we now hope to package up the content and discuss with a couple of select MPs.

The link to the list is -


Our graphic /post for 'ME is a spectrum disease' (from Day 1) has been shared widely, particularly overseas. It has resonated with people, and allowed some people with ME to explain to friends and family where they are on the severity spectrum.

I am not on FB. Thanks to whoever for making it possible for me to see these anyway, without having to have a FB identity.

 

[Subtropical Island]

A slick website and a worryingly slippery way with words - much more careful about claiming cures than that other NZ practitioner whose name escapes me right now - but implying cures anyway.

Better brace myself for another round of well-meaning friends and family coming with a "Have you seen this...?" Sigh!

(bolding in original)

Aaaaaaaaaahhhhhhh!!!

 

[theJOYdecision]

I have a well-meaning friend who was helped by The Switch. Like great for her but I’m left thinking, “Honey, your dr might have called it CFS but really all that means is you have no idea because now you think you know what ME/CFS is and that it’s easily cured.” But of course I won’t say that.... or at least not that bluntly.

 

[Ravn]

I have a well-meaning friend who was helped by The Switch. Like great for her but I’m left thinking, “Honey, your dr might have called it CFS but really all that means is you have no idea because now you think you know what ME/CFS is and that it’s easily cured.” But of course I won’t say that.... or at least not that bluntly.

I find the argument "my illness is different from their illness" quite effective, backed up by this study where only 1/3 of doctor-diagnosed CFS/ME patients met ICC criteria (which I do), meaning 2/3 did not. Mind you I've never had to argue directly with another ME patient, only with well-meaning friends and family citing testimonials and hearsay.

A total of 535 patients diagnosed with CFS/ME by a primary care physician were identified. [...]Of these, 30.28% met Fukuda criteria. A further 31.96% met both Fukuda criteria and International Consensus Criteria. There were 14.58% reporting chronic fatigue but did not meet criteria for CFS/ME and 23.18% were considered noncases due to exclusionary conditions.

https://www.dovepress.com/epidemiol...memyalgic-peer-reviewed-fulltext-article-CLEP

 

[theJOYdecision]

Thanks @Ravn that confirms a suspicion of mine. My GP diagnosed me by what he ruled out (though he has actively encouraged me to consult with Dr Vallings) so it would come as no surprise many are misdiagnosed. I basically just confirmed the diagnosis through research and digging and comparing notes with others with long-term ME. And I still hold out the possibility we might be wrong but that suspicion is fading. What criteria does solvecfs use for their self test?
I believe The Switch claims about 80% success rate with CFS. It sounds like you’re saying 66% of patients diagnose with CFS wouldn’t meet the criteria for ME/CFS. Then let’s consider that PwME might be deterred by attending a seminar due to anticipated PEM. Add on those who would be suspect of another promise of a cure which presumes stress/emotional/psychological problems are sustaining the condition. I could be convinced that the math might add up to only about 20% or less of people presenting to the program as CFS sufferers actually having ME.

 

[Marylib]

Just while I'm thinking about broader neurological things, this website was a very nice surprise:

https://www.mswaikato.org.nz

MS Waikato provides services to people with MS, Huntington's Disease, ME/CFS, fibromyalgia and allied neurological conditions.

View attachment 7288

The information about ME/CFS isn't perfect, but it is pretty good.

I really like the model; economies of scale in providing assistance to people who share many of the same problems. So, these diseases still have separate national organisations, but when it comes to the regional services in the Waikato, resources are shared.

Yes the info is not perfect at all. But the good thing is that we have a fieldworker for this area. I am really happy about that. And that was not always the case.

 

[Marylib]

A slick website and a worryingly slippery way with words - much more careful about claiming cures than that other NZ practitioner whose name escapes me right now - but implying cures anyway.

Better brace myself for another round of well-meaning friends and family coming with a "Have you seen this...?" Sigh!

(bolding in original)

These people seem to be cropping up all the time no matter how hard you try to do something about it. It really disturbs me. Why won't they just go away...sigh

 

[Marylib]

Reminder: submissions for the Review of the NZ Health System close at the end of this month (for details see post #66 here: https://www.s4me.info/threads/news-from-new-zealand-and-the-pacific-islands.4230/page-4#post-142495).

I have just finished my submission and can confirm that it's not necessary to answer all the questions. Some personal data is asked for but is optional. You can submit anonymously but I suspect your submission has more weight if for example you identify yourself as rural if you're making comments on rural service delivery.

A good opportunity to push issues relevant to ME. For example, I made some general points that are relevant to ME:

• services received should be based on need not on condition or whether the need is the result of an accident (covered by ACC) or illness (not covered by ACC)
• the need for better recognition of the potentially profoundly disabling nature of invisible and fluctuating chronic illnesses
• severely ill patients should have the right to receive home visits from their doctors
• the need to establish specialist tele-health hubs to improve access to specialist care for rural residents and those who can't travel for any reason

The more people make those sorts of points in their submissions, the more likely those points will end up in the draft report to the government - take to your keyboards, citoyens!

When is the second round coming up? I can't remember. I am referring to the round after the first submission.

 

[Marylib]

Just sharing the list of posts made on facebook for the MillionsMissing campaign just run by ME Awareness NZ.
This includes stories from people with ME in NZ, and a few lessons about what me is, the history of the name, difficulties obtaining health support, etc.
We had a different theme /slogan for each of the eight days.

It was a public awareness campaign for NZ, but we now hope to package up the content and discuss with a couple of select MPs.

The link to the list is -


Our graphic /post for 'ME is a spectrum disease' (from Day 1) has been shared widely, particularly overseas. It has resonated with people, and allowed some people with ME to explain to friends and family where they are on the severity spectrum.

Really good posters! Thanks.

 

[Marylib]

Looks like the Neurological Foundation needs a little educating on ME. The only place they mention it on their website is in the FAQ and this is the sum total of what they have to say:

https://neurological.org.nz/resources/faq/cfs-me

The reason I was on their website is that their recent newsletter had a lengthy feature on the Brain Bank, trying to encourage tissue donations. So I wanted to check if they had widened the range of conditions they look for. If the Brain Bank website is up to date then the answer is no, ME does not feature on the list.

https://www.fmhs.auckland.ac.nz/en/...rologicalFoundationDouglasHumanBrainBank.html

There was at one time in Oregon USA a brain bank that would accept donations from anybody. But you have to arrange for your own funeral expenses and transport. This is at Oregon Health and Sciences University in Portland Oregon, US

 

[Marylib]

I must have missed (or forgotten?) that. Can you elaborate? What guidelines and what problems, other than that silly personality stuff, are there?

As far as I know only one DHB in Auckland had been able to use those guidelines. Apparently there is money involved for the various DHB's to adapt them at this point. And not all DHB's have been able to pay what is necessary

 

[Marylib]

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.



Full article here: https://www.odt.co.nz/business/set-quest-treat-me

Yes apparently we were only able to get space in The Star in Dunedin. But there was a good article in there written by Prof. Warren Tate.

 

[Marylib]

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.

Oh how disappointing that you can no longer see the article written by Prof Warren Tate. It was very good.

 

[Marylib]

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.

If you remind me, maybe I can find a way. But all I seem to have is a link to the article originally published by the Star. But remind me and I will try to find out from Heather at MEISS. Sorry but I need reminders!