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News from New Zealand and the Pacific Islands

Discussion in 'General ME/CFS News' started by Hutan, May 19, 2018.

  1. Ravn

    Ravn Senior Member (Voting Rights)

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    Scoop.co.nz has picked up a press release from ANZMES:

    http://www.scoop.co.nz/stories/GE1905/S00042/2019-international-me-awareness-day-research.htm

    Starts off characteristically overoptimistic (with which I mean that the general ME-ignorant public could easily get the impression the whole problem is about to be solved so why pay it any further attention?):
    Later nuances somewhat:
     
    Marylib, andypants, Chezboo and 6 others like this.
  2. Ravn

    Ravn Senior Member (Voting Rights)

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    Marylib, andypants, Chezboo and 4 others like this.
  3. Ravn

    Ravn Senior Member (Voting Rights)

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    Does anyone know where the frequently quoted estimate of 20,000 people with ME in NZ comes from?

    Somewhere on the forum (sorry, can't remember where) prevalence rates of 0.2% (Fukuda) and 0.11% (CCC) were mentioned, based on overseas studies.

    If, for ease of calculation, we assume a population of 5million, then:

    0.2% = 10,000

    0.11% = 5,500

    So why are we using 0.4% ? Have there been any NZ prevalence studies done to support this?

    I'm just a bit worried about our credibility with so many conflicting figures being thrown about. Just one example: you frequently see the statement that ME is twice as common as MS. The estimate for MS in NZ is 4,000 so that doesn't match with the 20,000.

    I can see that for advocacy purposes a higher number sounds more impressive but I fear that could backfire if it can't be backed up by some solid stats.
     
    RoseE, Dolvi18, Andy and 2 others like this.
  4. Hutan

    Hutan Moderator Staff Member

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    I don't think that there have been any NZ prevalence studies.

    The 0.4% prevalence is as credible as any other guess for now I think. For example, here's the comment about prevalence from the recent Australian NHMRC public consultation document.
    https://consultations.nhmrc.gov.au/...fts/publicconsultationdraftceoreportmecfs.pdf
    But the data is hopeless. We really need some studies and/or registries.

    That's something that we've found from our communications with our local District Health Board. There's no evidence that there's a big problem out there, either in terms of numbers or in terms of severity.
     
    Chezboo, Dolvi18, Andy and 2 others like this.
  5. Ravn

    Ravn Senior Member (Voting Rights)

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    Couldn't agree more. The tricky bit, apart from getting any such studies/registries funded, will be to make sure whoever's doing them knows their way around the various diagnostic criteria and also understands what PEM is and isn't, so we can get some meaningful results.
     
    Marylib, Dolvi18, MEMarge and 3 others like this.
  6. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    A population based prevalence study that attempts to measure DALYs would be fantastic. It's just a pity that health research funders don't think such studies are important.
     
    Dolvi18, Hutan, MEMarge and 2 others like this.
  7. RuthT

    RuthT Senior Member (Voting Rights)

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    Hi All Just to say I’m Virtually walking the Te Araroa Trail: mapping my daily steps against the trail map. Am just out of Puketi Forest & headed for the East Coast. Tweet daily about it.

    I spent nearly a year in Lower Hutt in the late 80s & revisited twice, with friends there. May pop in from time to time if that’s ok.

    Ed corrected typo
     
  8. Ravn

    Ravn Senior Member (Voting Rights)

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    Just received a reply from my local MP to my letter. An excellent example of a politician giving the impression doing something but actually saying "don't bother me, go bother somebody else".

    He doesn't address any of the issues I raised in my letter but curiously the one thing he promises to do - "lobby with health professionals" - is something I didn't ask for. Nor did I mention international research in my letter - only lack of NZ research - so why did he in his?

    Makes me wonder, did he get other letters about ME and the reply is just a standard response to all of them? Or am I being too cynical?
    MP reply (2).jpg
     
  9. rvallee

    rvallee Senior Member (Voting Rights)

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    No, just the right amount of cynicism.

    Technically, ME is a "research priority" for the UK MRC. They haven't funded any real research in, what, about a decade and don't give a damn about it whatsoever. Useless and clueless.

    All we ever get is lies. On all the letters I sent, dozens of them, I received lies and platitudes. As long as they have "expert" advisors telling them to ignore us, authorities will blatantly lie because nobody but us cares to hold them accountable. What was accelerated by the NIH's "accelerating research"? Nothing at all. Lies and platitudes, top to bottom. At least it's on record but that won't matter for years.

    Governments won't lift a finger and medical institutions are even worse. If anything the last few years have made it clear that we're not going to get any help and have to raise the funds ourselves. It may be time to think of a different strategy, the normal way is clearly not working. We have to bypass the normal process and put our efforts where they won't be ruined by saboteurs who think it's all pointless anyway and would rather it failed.
     
  10. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Most replies to most questions received by politicians are standard responses curated by their staff.
     
  11. theJOYdecision

    theJOYdecision Senior Member (Voting Rights)

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    Generally speaking politicians will only start doing something meaningful when they perceive it to be of importance to the wider public. Or if they see the impact of the illness close up and personal with someone they love. Which is one reason why advocating for public awareness is helpful.
     
    Marylib, MEMarge, Amw66 and 3 others like this.
  12. Ravn

    Ravn Senior Member (Voting Rights)

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    I was just expecting a higher standard of cut & paste I guess, to make the deception less obvious :D
    That's why in my letter I mentioned ME in the wider context of rural residents' lack of access to health and disability services in general, to make it a larger issue. Didn't work so will have to think of a different angle next year I suppose.
     
  13. Ravn

    Ravn Senior Member (Voting Rights)

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    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
     
    MSEsperanza, MEMarge, RoseE and 3 others like this.
  14. Hutan

    Hutan Moderator Staff Member

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    That Brain Bank is a really nice facility; articles I have read suggest that they are very careful about cultural sensitivities and are respectful in general.

    It's easy to think that New Zealand doesn't have the scale to make a useful contribution to ME/CFS research. But there are plenty of ways we can make unique contributions. One of the ways would be making use of that Brain Bank.

    Given the 'Tapanui flu' outbreak back in the 1980s, people affected by what is now viewed as an outbreak of CFS could be asked if they would consider donating their brains to science. And of course, the rest of us could too.
     
    Last edited: May 18, 2019
    MSEsperanza, MEMarge, Amw66 and 3 others like this.
  15. Hutan

    Hutan Moderator Staff Member

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    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.

    Screen Shot 2019-05-18 at 9.10.48 PM.png

    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.
     
    Marylib, MSEsperanza, ahimsa and 15 others like this.
  16. RoseE

    RoseE Senior Member (Voting Rights)

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    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.
     
  17. Ravn

    Ravn Senior Member (Voting Rights)

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    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!
     
  18. Hutan

    Hutan Moderator Staff Member

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    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.
     
  19. Ravn

    Ravn Senior Member (Voting Rights)

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    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)
     
  20. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    They had to adopt the training programme rather than treatment wording after the MEAssociation prompted Advertising Standards Authority cases. I have found adding a link to those cases and or the MEAssociation statement tends to be quite effective in any Facebook encounters with disciples of P Parker. They tend to disappear. As the Scots sing “send them homewards to think again”.

    I don’t bother with general Facebook these days though so not had that pleasure recently.
     

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