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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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    Have you managed to write something @Hutan?

    I've decided I'm not comfortable sending the ANZMES template letter as it stands because of its inaccuracies and lack of sufficiently specific demands. But I do think letters to MPs are a good idea in principle so thought right, I'm going to write one myself - and promptly got bogged down in the morass of my own ignorance. I simply have no idea how politics and public service actually work behind the scenes. And I don't have the energy to do the requisite research. So I need some help here.

    While I have some personal gripes about how the system has treated me - who with ME hasn't - I don't want to make my letter about my individual case but about how PwME are treated up and down the country (though I may use my personal experience as an illustrative example if it happens to fit).

    I want to write a letter that makes a very specific demand that an MP has to respond to properly with some action rather than just with some words of sympathy and the excuse that it's all the fault of the current government (my local MPs are a couple of first-term opposition backbenchers).

    And herein lies my problem. What exactly can you ask an MP to actually do to change things? For example:
    • More research funding would be good - but what power does parliament or an MP have to influence funding decisions?
    • More - and better - medical education and continuing professional development would be good - but what power does parliament or an MP have to influence training institutes' decisions? And to force already practicing medical professionals to educate themselves?
    • More home-based services would be good. In this case there are probably already theoretical entitlements that we get turned down for due to assessors' ignorance. What power does parliament or an MP have to force assessors to base their decisions on patient need rather than ignorant preconceptions?
    And I could go on but you get the point: I have no idea what to ask for. Any suggestions for specific, practical demands welcome.

    Also, would it make sense to ask for a parliamentary debate a la Scotland or Denmark? Would that that even be possible in our system? If so, what precise question/demand should we ask to be debated? To achieve what precise practical purpose?
     
    ladycatlover, Simone, RoseE and 9 others like this.
  2. MyalgicE

    MyalgicE Senior Member (Voting Rights)

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    @Ravn
    Here are my suggestions (I used to work in a Minister’s office & government here in Australia). Limit your requests to three things.

    You could ask them:

    - to commit to funding biomedical research, with clearly defined cohorts.

    - to fund GP education

    - create or update information on a government website that is a resource that government and community support service agencies can refer to, so they understand the serious nature of the disease.

    - ask them to attend events or promote ME Awareness Day in their electorate newsletter/social media.

    Personal stories are powerful, so briefly tell yours and how it has affected you.

    Depending on how well you are, ask them for a meeting or to visit you.

    Good luck!

    Edit: if writing/talking to NZ Greens, show them what their Australian counterparts have committed to, here’s their policy document:
    https://jordon-steele-john.greensmps.org.au/sites/default/files/ME and CFS Policy Doc.pdf
     
    Last edited: Apr 12, 2019
    Marylib, ladycatlover, mango and 8 others like this.
  3. Hutan

    Hutan Moderator Staff Member

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    Hi @Ravn, I wrote an email to the President of ANZMES on 2 April with detailed comments and suggestions but I haven't had any reply.

    I made a draft of a revised version with the idea that it could be a starting point for a letter from members of our local patient group. It has actually now been circulated to members as an alternative letter, along with the ANZMES one. I would have preferred to see it worked on a bit first. But, as one of our committee members commented, it may be more about the number of letters that are received than the content. I think ANZMES are seeing this as a way for preparing the ground before a meeting with the Health Minister.

    I agree with MyalgicE that personal stories are useful. A mother's story was the catalyst for the productive relationship we now have with our District Health Board. So perhaps some of the letters can include personal stories and, for those of us with less energy and creativity, we can just send template letters to contribute to a sense of ME/CFS being a significant problem.

    I'm copying my draft here. Feel free to make whatever use you wish of it.

    Sender address. .............................................................
    ........................................................................................
    ........................................................................................



    Date:


    To ...................................................................................

    Parliament Office
    Private Bag 18888
    Parliament Buildings
    Wellington 6160



    Dear .......


    I suffer from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a disease acknowledged by the United States Centres for Disease Control and Prevention as 'chronic and debilitating’ with systemic effects including immune and cellular metabolism problems. After the first two years of illness, rates of recovery are low. As well as being disabling, this disease is common. It is estimated that around 20,000 people in New Zealand have ME/CFS, 5 times as many people as Multiple Sclerosis. Studies have found that ME/CFS is the most common cause of disease-related long term absence from school.

    Many families are struggling to cope with this disease which often hits suddenly after a viral illness. Parents have to give up work to look after sick children. Most adults with ME/CFS are unable to work and the rate of suicide is high. The illness is a substantial burden on the families directly affected and our communities. Using an American estimate of the societal cost of this illness of around NZ$24,000 per person per year, the cost in New Zealand is nearly NZ$500,000,000. Despite all this, ME/CFS has received very little government attention and knowledge of the disease is poor among doctors.


    Both the Australian and United States governments have recently acknowledged the lack of any effective treatment for ME/CFS and the need to provide better care. This year both those governments have funded research and conferences to further the understanding of the biological basis of ME/CFS and to find biomarkers and treatments. We have researchers here in New Zealand who are working on ME/CFS, including a team led by Professor Tate, an eminent biochemist. However, they receive very little government funding and mostly rely on donations from the ME/CFS community.

    It is difficult for those who need home care to access it. Currently care for people with ME/CFS is funded under the Long Term Support - Chronic Health Conditions scheme of the District Health Boards, but the District Health Boards have many funding priorities. Instead care for people with ME/CFS care should be provided through the Disability Support Services scheme.


    I hope that, as ME/CFS Day approaches on 12 May, you will consider how various government agencies can work to better help people with ME/CFS and provide hope. I look forward to your reply.

    Yours faithfully,

    …………………………………………………………..
     
    Last edited: Apr 12, 2019
  4. Hutan

    Hutan Moderator Staff Member

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    Ravn, I think the questions in your post are really good ones. I think we need to find out the answers to them.

    We need to understand better how government funding of medical research works. Googling might do it, but perhaps Professor Tate or any medical researcher could advise? I'll send Prof Tate an email.

    In our region we are working with the District Health Board to improve the online Health Pathways information for clinicians. That material is then translated into the publicly available Health Info webpages. The Health Pathways platform is used for a large proportion of New Zealand District Health Boards, and also for health authorities in Australia and the UK. Each health authority has its own content, but each one can view the content of the others. So, if we can get a good ME/CFS document locally, it can be marked as being template-worthy and then it becomes easier for people in other regions to lobby for adoption of similar content. Developing new content takes a while, but I'm confident that we will have something decent by the end of the year.

    Locally, we are working on getting grants to fund training of a core team of medical professionals. Before we can ask for the government to do this, I think we need a good revised guideline approved by an NZ health board, so we have something authoritative and local to point to. If the NICE guideline was revised in a favourable way, that might help a lot on this item. For this reason, I wouldn't make better medical education a priority request from government this year.

    It all gets quite 'chicken and egg', doesn't it? Which perhaps suggests that a careful strategy isn't really needed and a whole lot of efforts, not necessarily carefully coordinated, might together achieve things. (Which is just as well as advocacy in NZ is not well coordinated.)

    Ideally again, we'd have district health boards with revised clinical guidelines before we lobbied on this. If an MP was deciding whether to help move ME/CFS home care decisions from the district health boards (who look after people with mental health conditions), to Disability Support Services (who look after people with some permanent neurological conditions and tend to have more money to spend), a quick look at the online recommendations for CBT and GET and information suggesting you can think your way out of the illness would tend to make them not bother. But, who knows? Perhaps someone can get the MP to look past that and instead look at material like the CDC content. It's a problem that it's such a complicated story to tell.
     
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  5. Ravn

    Ravn Senior Member (Voting Rights)

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    Thank you for the reminder @MyalgicE. How did you guess I was trying to fit in far too much?:laugh:
    No local Green MPs in my area but could be worth sending a separate letter with that Australian link to all our Green MPs? Maybe if I find the energy...
    Thank you @Hutan. That is definitely a better version of the letter. I may well end up pinching it, or bits of it, if I get completely stuck on my own. I agree that many different individual letters would be better but, if energy fails, a letter is better than no letter.
    Just googled the Health Info pages. Looks like my DHB doesn't bother with the public Health Info pages, so no idea what might be lurking on their internal Health Pathways site. Had a look at Canterbury instead. Yikes! GET! CBT! Working towards recovery!
    You have your work cut out @Hutan. Thanks for taking on that battle.
    Yes. I think that's at the core of my getting bogged down. Every time I try make one point, like GPs need better training, I also feel the need to answer the question why they don't have the training in the first place. And with that you're into lack of research and so need to explain why there's lack of research. Which leads down the whole BPS rabbit hole and you start to sound like a mad conspiracy theorist. You can't even blame your reader/listener for coming to that conclusion because the politics of ME truly are too absurd to be believable by anyone but us unfortunate initiated. :banghead:
     
  6. Hutan

    Hutan Moderator Staff Member

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    :rofl: Perfectly put
     
  7. RoseE

    RoseE Senior Member (Voting Rights)

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    I see that Dr Corin Storkey updated his view of what CFS is, and the cause, in October 2018. He does mention PEM there (I don't think it was clear previously whether he was aware that was a symptom?), and links to some recent research. https://www.selenohealth.com/2018/10/01/what_is_chronic_fatigue/

    What do people feel about the 8 step treatment plan? https://www.selenohealth.com/2018/10/16/treating-chronic-fatigue/

    Do we know anyone that has been helped by this approach?
    (Just asking cause someone asked me to share an event of his on social media, and I don't know how to introduce it with some caution).
     
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  8. Esther12

    Esther12 Senior Member (Voting Rights)

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    Looks like quackery to me.
     
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  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Yes this is a straightforward pseudoscientific scam I am afraid.
     
  10. Ravn

    Ravn Senior Member (Voting Rights)

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    Not convinced he really understands PEM - see my high-lighting in the quote below. Sounds more like he's read about it and thought he'd better mention it because all those patients keep harping on about it.

    Also, so the cause is now "thought to be" known? That news must have passed me by somehow...
    Regarding the programme, eating a plant-based, unprocessed diet is unlikely to do much harm. Consuming lots of supplements is potentially more dubious (and expensive - I mean: profitable for the (Maca) supplement seller). But patient blaming is not harmless. Right now I'm feeling quite "toxic minded" after reading this (my bolding):
    :wtf::yuck::banghead:
    Not sure that sort of thing should be shared at all, or if it should be shared with a massive CAUTION!!!
     
  11. Hutan

    Hutan Moderator Staff Member

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    Perfectly put again @Ravn.
    Oh, according to the website, it's central sensitivity, you know, (hand waves), there's stress, lots of stress, and then something happens...
     
  12. Trish

    Trish Moderator Staff Member

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    Someone who says ''chronic fatigue is a blessing', 'recovery is a mindset' and PEM is 'tiredness' .hasn't a clue what ME/CFS is, and should never pretend they do. It is very harmful.
     
  13. RoseE

    RoseE Senior Member (Voting Rights)

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    thanks everyone. I had skim read most of it, and missed these critical bits. So thanks for highlighting the obvious, much appreciated.
     
  14. RoseE

    RoseE Senior Member (Voting Rights)

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    An article of interest re Public Health leadership in NZ https://www.newsroom.co.nz/2019/04/16/531451/nzs-deadly-public-health-battle#

     
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  15. Ravn

    Ravn Senior Member (Voting Rights)

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    Article and short video in SunLive: When ‘the horrible monster’ called on Kaye
    https://www.sunlive.co.nz/news/206191-when-horrible-monster-called-on-kaye.html

    Quite a good article about living with ME for 30 years - until you get to the last 3 paragraphs that promote a certain Dr Corin Storkey's upcoming talk about "about preventing, managing and overcoming CFS" - read those bits at your own peril, I for one am feeling quite "toxic minded" again (see post #110).
     
  16. RoseE

    RoseE Senior Member (Voting Rights)

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    Anyone heard of the Institute of Functional Medicine? Head Office in Washington, but practitioners around the world.

    There is a doctor in Gisborne that has completed their accreditation programme /is a practitioner. https://www.ifm.org/practitioners/leigh-willoughby-mbchb-frca-md/

    The IFM site says they aim to
    However the articles I found on CFS /SEID seemed mainly to focus on the 2015 study around supporting mitochondria.
    https://www.ifm.org/?s=chronic fatigue syndrome&type=news_post
     
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  17. Ravn

    Ravn Senior Member (Voting Rights)

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    From the April 2019 newsletter of ME Information and Support (Otago and Southland)
    That's all I know. Does anyone here have more information (they can share)?
     
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  18. Daisybell

    Daisybell Moderator Staff Member

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    That makes me feel anxious.....
    I’d rather have no guidelines than poor guidelines. I just hope that there’s no BPS component.
     
  19. Hutan

    Hutan Moderator Staff Member

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    That is concerning. The recent update on the Auckland guidelines that I understand Dr Vallings worked on was quite a missed opportunity. They still talk about CFS affecting high achievers, things like that. I don't know how much of the final content reflected Dr Vallings' views, of course, but some of the problems do relate to things that Dr Vallings has actually said in public.

    @Simone, do you know anything about this? Can Emerge have some input?
     
  20. Ravn

    Ravn Senior Member (Voting Rights)

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

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