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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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    Wendy sounds like a treasure. Sorry to hear she's severe right now. Must make it so much harder to achieve her vision. It's a great idea.

    The location is irrelevant to me as I'm way too ill to travel anywhere, I was just curious about the whole respite idea. But it is ironic that those of us who'll probably need respite care most will also be those who are least able to travel to it. But short of having a respite home in every neighbourhood around the country there isn't really a good solution I can think of...

    ... unless she wants to look at the backpackers just up the road from me that could be coming up for sale... hmm, major renovations required, located in the deepest South, significant distance from airport and medical services, no local ME expertise whatsoever... so maybe not so ideal... but the views are great, that has to be worth something...:)
     
  2. RoseE

    RoseE Senior Member (Voting Rights)

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    This worries me, as our local pain clinic believes that the pain of ME/CFS & fibromyalgia is brain handling messages incorrectly.

    https://www.stuff.co.nz/national/he...nal-cost-but-new-zealand-lacks-an-action-plan

    "Chronic pain is complex and needs a complex response. That might mean assessment of pain conditions, prescribing medication, coordinating rehabilitation, performing medical procedures ... [and] co-operating with other healthcare professionals.
    More hospital-based multi-disciplinary pain clinics around the country would stem the rising cost and impact of chronic pain on New Zealand.
    We've got the research that points to a model that works and a way to make that a reality throughout the country," he said.
    Shipton met with Health Minister David Clark on Thursday to discuss the national pain strategy. He had also fielded interest from ACC, Pharmac and Treasury."

    and

    "What is chronic pain?
    * Chronic pain is defined as any pain lasting more than three months
    * It's different to acute pain, which is a normal sensation that alerts us to possible injury
    * Chronic pain is thought to occur when nerves become over-sensitive and send warning messages to the brain even when there is no injury, or the original injury causing pain has healed
    * The pain can be shooting, burning, aching or electrical in nature and can lead to discomfort, soreness, tightness or stiffness
    * There is no one specific test or scan that can diagnose persistent pain, so it can often take some time to determine what is going on"

    I think I will send to ANZMES and see if they will get involved in discussions.
     
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  3. rvallee

    rvallee Senior Member (Voting Rights)

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    Objection: not in evidence.

    I don't know where this belief comes from that pain becomes entirely different just because it lasts longer. That's not how any of this works.

    It will come as a surprise but it's a very bad idea to let medical professionals just make stuff up and rely on untested assumptions. But it's easy to make that mistake, after all it only fails every single time.
     
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  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Anyone who says stuff like this is an ace bullshitter. I have had the same acute pain from sciatica for thirty years and it isn't any different because of the time it has lasted.

    And there is no model that will solve anything. What amazes me is that anyone should take people like this seriously - or that they should expect to be taken seriously.

    And its the same stale old stuff that has been going since 1990.
     
    MEMarge, Pechius, andypants and 12 others like this.
  5. Ravn

    Ravn Senior Member (Voting Rights)

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    It's possible to comment on the article if anyone feels so inclined.
    At face value this bit sounds ok. As if they propose looking at chronic pain from all sorts of angles with all sorts of causes that need all sorts of different treatments. Then they spoil it:
    So they have a model, i.e. one model that covers all and works for all.
    And that one model is CSS, basically.
    And here are the reasons it's so attractive, $$$:
     
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  6. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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    Thanks @Ravn, that’s just what I would have liked to say.
    I’m ok with researching if the body/brain tends to disregard the same pain over time. And if so whether some examples of ongoing pain are a failure of this system to kick in. But having that as THE model for ongoing pain is a failure of logic and ...eggs in one basket... ga. Thanks for expressing it better than I.
     
    Last edited: Mar 13, 2019
    RoseE, Ravn, Hutan and 1 other person like this.
  7. RoseE

    RoseE Senior Member (Voting Rights)

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    ukxmrv, Ravn, rvallee and 3 others like this.
  8. Ravn

    Ravn Senior Member (Voting Rights)

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    That Cochrane Review strikes again :banghead:
    I did have a go at the Cochrane Crowd thing a while ago but soon gave up due to technical problems (somehow between their IT system and my computer I was forced to repeat the training module every single time I wanted to access any actual articles to rate). I also got sick of their over the top cheerleadery attitude.

    From memory the actual work was just a matter of reading an abstract and deciding whether it was a randomised controlled trial or not, can't remember if blinding came into it.
     
    ukxmrv, RoseE, Esther12 and 3 others like this.
  9. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Perhaps we should start making a list to indicate the influence of that single review on healthcare policy all over the world? It would put pressure on Cochrane to stop stalling the update.

    Fink recently used it in Denmark.
    A government website in Belgium that informs doctors uses it to promote GET in ME/CFS.
    The biased news articles from the Monitor in the Netherlands used it to ignore criticism.
    The HRA-report referred to it.
    Fiona Watt, head of the British MRC, used it to defend the PACE trial

    I have no doubt that there are many more examples.
     
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  10. andypants

    andypants Senior Member (Voting Rights)

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    It has been used frequently in Norway, too.
     
  11. Ravn

    Ravn Senior Member (Voting Rights)

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    andypants, Dolphin, rvallee and 4 others like this.
  12. RoseE

    RoseE Senior Member (Voting Rights)

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    Invitation to join M.E. Awareness NZ and our Online MillionsMissingNZ Campaign


    Hi All,

    Our invitations…
    1. Join our M.E. Awareness NZ closed facebook group
    2. Submit your story for our National Online Social Media Campaign for Millions Missing Week May 5th-12th
    Are you passionate about ME Advocacy and Awareness Raising in NZ? Then this Facebook group “M.E. Awareness NZ” is for you (previously called “ME Action NZ").
    Amongst the many other things that the M.E. Awareness NZ community are hoping and planning to do (we are about to issue our Mission statement), one of our focuses each year will be honouring May 12th International ME/CFS Awareness Day.

    This year M.E. Awareness NZ is joining in on ME Action USA’s idea of #Millions Missing Week - May 5th-12th, which is an International ME/CFS Awareness Raising Campaign Week - a way for us in NZ to join in on the International Movement!

    So we here in NZ have decided to participate by running a national online social media awareness campaign with all of our local stories/photos/art from around NZ throughout that week via our social media channels (we have our M.E. Awareness NZ Page, an instagram account and soon to come - Twitter account). We feel that it is so important to put our faces and stories to this disease, to humanise it and localise it here in our NZ context, and to help the public see that this is happening right here in our home country, in our cities, to our children, friends, colleagues and whānau.

    So we are calling on everyone in NZ with ME and CFS and our carers to please participate in this campaign by submitting your image, story, poem or work of art about your journey with ME/CFS to M.E. Awareness NZ at this email address → m.e.awareness.nz@gmail.com. You are free to request that your submission be anonymous.

    We at M.E. Awareness NZ can help with layout of images and formatting text for the campaign if that is something you would like help with. Please submit by Sunday 21st April 2019 if possible.

    Here are some ideas of what you can submit, or feel free to do something different!


    [​IMG]

    1. #MillionsMissing Shoes photo

    2. #TwoFacesOfME photo collage

    3. #MyMECFS story or poetry

    4. #MillionsMissing themed Art

    5. #Research4MyalgicE

    OR OTHER ideas? Feel free to be creative in sharing your story!


    Thanks everyone :)


    The M.E. Awareness NZ team

    Find us here;

     
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  13. OverTheHills

    OverTheHills Senior Member (Voting Rights)

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    So just to be sure I have understood correctly (I found that big post a bit challenging to read). I am a non social media person. I assume it would still be useful if I took a picture of some shoes for the Millions Missing and emailed that to the address you gave?

    Thanks
     
  14. Ravn

    Ravn Senior Member (Voting Rights)

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    This has just arrived in the mail. (ETA: "This" refers to a letter template mailed out by ANZMES for patients to add their details and send to the NZ Parliament.)

    In principle the idea of sending letters to MPs on 12 May to raise ME awareness is a good one. But!

    But I think there are issues with the content. There's quite a bit of waffle plus some inaccuracies. For example the claim that a biomarker is just around the corner is likely wrong (however much I'd like it to be correct) and doesn't serve any purpose in the letter.

    Also, while the letter outlines some problems such as access to home care being a bit of a post code lottery, it doesn't specify any concrete actions that would help us.
    That's not likely to result in any decisive action.
    ANZMES letter to parliament p1.jpg ANZMES letter to parliament p2.jpg
     
    Last edited: Apr 1, 2019
  15. RoseE

    RoseE Senior Member (Voting Rights)

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    Thanks for the feedback on the challenging read. We will try to do better!

    Yes, if you would take a picture of some shoes for the Millions Missing campaign, and email them in, that would be great.
    Have you seen the examples of the shoe photos?
     
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  16. RoseE

    RoseE Senior Member (Voting Rights)

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    Would you be interested in helping M.E. Awareness NZ to prepare content for an online petition. I see we can create one on https://www.parliament.nz/en/pb/petitions/ that goes to the House of Representatives. Perhaps that is a better option than a letter to MPs?

    Update: A key focus could be having ME included in the DSS (Disability Support Services) eligibility criteria. Instead it falls under Long Term Support - Chronic Health Conditions funding (LTS-CHC) which sits with the underfunded District Health Boards.
    Perhaps I should start a new thread for this discussion? Won't be for a few days - I have a busy couple of days.
     
    Last edited: Apr 1, 2019
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  17. Ravn

    Ravn Senior Member (Voting Rights)

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    Not a bad idea. Given that ANZMES has already sent out their letter template - which means a number of patients likely will send it to parliament - any petition this year should probably tie in with that, i.e. focus on access to home services. Plus ANZMES probably should be involved if only to drive a campaign to get as many supporting signatures as possible.

    Very happy to contribute in some small way @RoseE but I'm severe so somebody else would have to be the main force behind this.

    Some info from https://www.parliament.nz/en/get-involved/have-your-say/guide-for-petitions/ (bolding mine)
    Pity that, an aurora australis on demand during those hours of insomnia would be quite lovely...
    This is unclear to me. Do you have to be at least a NZ resident or can anyone from anywhere petition? Not that it would be a problem for us to find a citizen but what about signing petitions? Who can do this, just NZ residents/citizens or anyone?
    This is important from a strategic point of view. We don't want lots of people submitting lots of similar, weak petitions. Just one strong one. I wonder if it would be ok to do an annual petition, each time on a different problem related to ME, e.g. home services this year, research next year, medical education the year after, etc. A search of current ones on ME/CFS comes up blank. I'm assuming there have been no past petitions, does anyone know?
    A quick look at some current petitions on other topics shows they are all very short and to the point, just a few sentences. The real work looks likely to be later if asked to make a submission.
     
  18. Hutan

    Hutan Moderator Staff Member

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    I agree. This letter template from ANZMES looks as though it needs a bit more work. It mentions the IOM but doesn't say what country that organisation was from, so missing out on the credibility that the institution could have provided.

    As you say Ravn, there's a big problem with suggesting that the Griffith team and US researchers are going to deliver a biomarker any moment. So, if those teams have it all in hand, it doesn't sound as though we need any funds directed to research?

    And yes, the request needs to be specific e.g. as RoseE outlined, rather than talking vaguely about home help access.

    It's probably not too late for ANZMES to circulate an improved letter incorporating feedback. I'll send them something.

    Nice idea for a petition, and one that ties in with a letter writing campaign.
     
  19. RoseE

    RoseE Senior Member (Voting Rights)

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    @Ravn, @Hutan I have started a new thread for this :) And will share in the M.E. Awareness NZ group.

    https://s4me.info/threads/nz-petiti...y-support-services-eligibility-criteria.8949/
     
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  20. RoseE

    RoseE Senior Member (Voting Rights)

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    For anyone in Christchurch or surrounds...

    Dr Bronwyn Graham was sponsored to attend the Emerge 2019 International Research Symposium in March, by the local group M.E./CFS Group Canterbury. She will be speaking about what she learnt at the next support meeting.

    Wed, Apr 24 at 1:30pm, Abberley Park Hall, Abberley Crescent, St Albans. Limited to 40.

    Refer the facebook event

    which says...
     
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