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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. Hutan

    Hutan Moderator Staff Member

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    Regional clinical guidelines in NZ seem to be only available to medical professionals but the Auckland guideline was circulated by advocates.
    I've made a thread here:
    https://www.s4me.info/threads/nz-auckland-cfs-clinical-guidance-revision-2019.9224/

    If it is any indication of what an Australia/NZ guideline might look like, I'm very concerned.
     
    ladycatlover, Simone, MEMarge and 6 others like this.
  2. Simone

    Simone Senior Member (Voting Rights)

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    It’s been used here in Australia by the RACGP (along with PACE itself) to justify their recommendation of GET.
    https://www.racgp.org.au/clinical-r...ded-exercise-therapy-chronic-fatigue-syndrome
     
  3. Simone

    Simone Senior Member (Voting Rights)

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    Sadly, no I don’t know anything about this. I think they’ve almost certainly got some misinformation as far the suggesting that the guidelines “will be used in Australia”. Our NHMRC committee recommended Australia update our guidelines and the report suggested they be developed internally. They’ve not been outsourced to NZ. As for who the “Australian Specialists” are who might be involved, we have so few, and I’d be worried about who they’re working with too. I’d be very interested to find out more about this. @Ravn, is there a way we can read the whole article?
     
    Chezboo, ladycatlover, RoseE and 3 others like this.
  4. Ravn

    Ravn Senior Member (Voting Rights)

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    No, the sentence I quoted in post #117 is the sum total of what there was in the newsletter on that topic, and by the sound of it the newsletter editor doesn't know any more either. Not very helpful...

    ETA: I've sent an email to the newsletter editor asking if any more info is available, or if they know who might know more about it all.
     
    Last edited: Apr 26, 2019
    Chezboo, ladycatlover, RoseE and 3 others like this.
  5. Simone

    Simone Senior Member (Voting Rights)

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    Hmm, that’s not very much information, is it? It’s a big statement to have made with so little to back it up. Hopefully, you can find out more.
     
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  6. Hutan

    Hutan Moderator Staff Member

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    Here's a link to a thread about an Australian petition to improve access to disability support for people with ME/CFS. It calls for
    • ME/CFS to be included in a list of permanent conditions in the NDIS; and
    • for there to be no requirement to undergo CBT and GET treatment before benefits are provided.
    Anyone can sign. If the petition is successful it will make it much easier to argue for better support for New Zealand people with ME/CFS.
     
    Last edited: Apr 27, 2019
    ladycatlover, RoseE, Amw66 and 8 others like this.
  7. Simone

    Simone Senior Member (Voting Rights)

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    Thanks for sharing the petition, @Hutan!
     
  8. Ravn

    Ravn Senior Member (Voting Rights)

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    To do: write letters to MPs before May - tick (just: it's late on April 30th :D).

    1/ To the Greens, suggesting that ME Awareness week could be a fitting time to familiarise themselves with the Australian Green Party policy document, and to consider developing one of their own for us in NZ.

    2/ To my local MP and another list MP based locally, focussing on the extra difficulties rural residents have in getting access to diagnosis, supportive treatment, as well as home care or disability support. I chose that focus because one, that happens to be my personal experience. Two, the rural angle may catch the attention of rural MPs who are not otherwise much involved in health and disability. And three, whatever gets done to improve rural access will also improve access in general.

    Not really expecting much of a result other than a polite reply but water dripping and wearing away rock and all that...
     
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  9. Ravn

    Ravn Senior Member (Voting Rights)

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    Update:
    Received a couple of replies, one from the editor and one from ANZMES, but no new info and no answers to my specific questions (what guidelines exactly, who else is involved, any possibility for patient input). So no further ahead. I did suggest ANZMES ask Dr Vallings, seeing she's their medical advisor or something in that line, but I don't think they have done so.
     
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  10. MyalgicE

    MyalgicE Senior Member (Voting Rights)

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    There’s a number of problems with this petition:

    1. It’s already been tabled in Parliament (paper version) and had a response from government.

    2. There is an election in three weeks and the Minister will most likely change, so even if it’s delivered before then he won’t have time to act.

    3. It’s asking for mecfs to be added to List B, but Emerge and ME Australia have already been told this not used to make decisions. In Feb we (two ME Australian and Heidi from Emerge) met with them and they said List B isn’t used to evaluate claims, they don’t judge on diagnosis, they look at level of disability.

    4. NDIA already said they are holding workshops to consult, this was decided back in February during our meeting.
    https://meaustralia.net/2019/03/30/disability-agency-consults-on-me-and-cfs/
     
    RoseE, Sly Saint, Hutan and 1 other person like this.
  11. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    The same is true in Belgium. It makes it difficult to change things. The only option we see is to plead for better education on ME/CFS for the doctors making the disability assessment.
     
  12. RoseE

    RoseE Senior Member (Voting Rights)

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    Just sharing that M.E. awareness events have kicked off in NZ today, and can be followed /supported /shared on a variety of media.

    The M.E. Awareness NZ collective is running an online Millions Missing campaign...
    And the 20000MissingNZ campaign...
    The team have distributed posters and fliers around towns /cities, and have this backed up by a website and social media...
     
  13. Ravn

    Ravn Senior Member (Voting Rights)

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    Anyone able to write a polite but firm and scientifically sound letter to the editor of the NZ Listener (I'm too badly crashed myself)?

    The May 11-17 edition has an article by Marc Wilson (regular psychology column). Title: "Ills thought out".

    Starts ok. He outlines how people with diabetes of MS tend to have better quality of life if they accept their illness and take a proactive approach to symptom management. So far so sensible.

    Then he switches to CFS and reports on studies by Moss-Morris (I'd no idea she's an ex-Aucklander!) who claims to have found that depression, anxiety and perfectionism all increase the risk of developing CFS after glandular fever. Also that if you change the way you think about symptoms improves your quality of life. Arguably the worst bit (not sure if that's Wilson or Moss-Morris): "As with diabetes, MS or even asthma, there's reason to believe that how you think affects the way you experience CFS and, perhaps, even whether you develop it al all."

    Then he tries to make it all good again by writing "this does not mean CFS is all in the head". :banghead:

    So far the article isn't online at noted.co.nz (some Listener articles eventually appear there) but I could try to scan it if anyone wants to have a go at a reply.
     
  14. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    This is the paper she is referring to: The pathway from glandular fever to chronic fatigue syndrome: can the cognitive behavioural model provide the map?

    I think the paper is worth a discussion because it is one of the few papers that actually tried to test the CBT-model using a prospective design. My first impression is that they didn't correct for multiple comparisons, so many of the 'significant' results in the individual logistic regression analysis such as perfectionism should probably not have been reported as such.

    When all these factors were tested in a Multivariate logistic regression analysis along with gender, age and symptoms, only 'all-or-nothing behavior' remained a significant predictor. With correction for multiple comparisons, this would also be questioned. So I don't think these results are robust. The sample was also a bit small with only 17 EBV-patients who developed CFS after 6 months.
     
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  15. Hutan

    Hutan Moderator Staff Member

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    That's annoying. I'll buy a copy of the Listener tomorrow.

    Here's a thread on a recent paper by Loades and Chalder that failed to find higher rates of perfectionism in young people with CFS than in healthy controls.
    https://www.s4me.info/threads/psych...-parents-2019-chalder-et-al.8406/#post-147790

    I don't think we have a thread on this yet? It would be good to have one. Good comments @Michiel Tack.
     
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  16. Hutan

    Hutan Moderator Staff Member

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  17. Hutan

    Hutan Moderator Staff Member

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    Last year ANZMES held a one-day workshop for 'fieldworkers and leaders' from the regional support groups that are affiliated with ANZMES. A report on the content of the workshop has been circulated. Edit - the report was written last year by a participant, the quotes are taken from it.

    The first speaker was a psychologist, Anna Friis, who focussed on mindfulness and compassion. Parking my scepticism about anything labelled 'mindfulness', I think this sounds helpful.
    The next item also sounds useful:
    Then there was a presentation by a physiotherapist, Erin Holland, answering the question “Is there a role for physiotherapy and exercise in ME?”
    That sounded fairly unlikely to cause harm, but this was a worry.
    Retraining the nervous system with the implication that the exercise will cure ME/CFS, albeit slowly? I think it's concerning that ANZMES is exposing people who advise patients, liaise with local health professionals and advocate for care of people with ME to this sort of stuff, with no evidence to support it.

    Next up was the now President, George Connolly.
    I find this a bit ironic, given that I have tried to communicate with George, no doubt on issues that he would view as evidence of me being a difficult person, and George's only response seems to be to ignore me. So, I'm not sure how much expertise he has in this area.

    And finally there was a presentation by Dr Vallings on ME/CFS research from the IiME conference. This presented a very positive outlook. I think it would be easy for the regional representatives to come away from this thinking that research is well in hand and that there's little need for advocacy.
    The next workshop for representatives from regional groups is coming up in September and it sounds as though the agenda is being planned now. I'll contact ANZMES to express my hope that any medical information the workshop gives is firmly evidence-based and that the situation with respect to research is realistic. I think David Tuller might be travelling in New Zealand at round about this time; it would be fantastic if he could make a presentation in the workshop. @dave30th @RoseE
     
    Last edited: May 7, 2019
  18. OverTheHills

    OverTheHills Senior Member (Voting Rights)

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    Thanks for that straight-talking report @Hutan.

    There is a world of difference between being grateful for the work of dedicated researchers, celebrating any steps forward and the pat-on-the-head "got to keep their spirits up" paternalistic rubbish that is served up by some well-meaning people. We need realism not propaganda.

    The real situation for pwME all round the world is awful, if a little improved in some countries. Hope generated through fairy tales is not helpful in the long run. And most pwME are unfortunately in it for the long run.
     
  19. Ravn

    Ravn Senior Member (Voting Rights)

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    Had my first reply from one of the Green MPs (or rather from his office). My letter has been forwarded to the spokesperson for disability of the party - who already has her own copy because I wrote the same letter to each of the Green party members, something I indicated very clearly at the top of my letter.

    So not convinced even the office person read my letter all that carefully. Quite convinced the MP didn't read it at all, which I expected, but apparently he still "very much appreciates [my] correspondence".

    I'm quite looking forward to more replies now. Will they all use the same email template? Will all the other Green MPs forward their copy to the disability spokesperson, too? Will the disability spokesperson('s office) even realise they are all the same letter? Or will they think Gosh there's a lot of people writing about ME this week? :D
     
  20. Ravn

    Ravn Senior Member (Voting Rights)

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    A couple of articles in the community paper The Star (Dunedin) this week. My guess is that both articles were supplied copy, the first by the local support group, the second by Prof Tate.

    A bit of an oops! in the first article. It states that "people did not often present any physical symptoms" when what they undoubtedly meant was "no obvious outward signs".

    Careful readers will also notice a discrepancy in optimism between the two pieces. The support group article gives the impression a biomarker is not far away, Prof. Tate sees it as somewhat further off yet.

    Overall ok articles though I think Prof. Tate's piece will go over the top of the head of the general public and I wish they put some things more into perspective, like Stanford getting a 5 million dollar grant. To the uninitiated that probably sounds much more generous than it is.

    https://www.thestar.co.nz/digital-edition/?edition=STR_2019_05_09
    pages 21-22
     

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