News from Aotearoa/New Zealand and the Pacific Islands

Michiel Tack said:
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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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
 
Hutan said:
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?
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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?
 
Simone said:
I’d be very interested to find out more about this. @Ravn, is there a way we can read the whole article?
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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.
 
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Ravn said:
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.
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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.
 
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.
 
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Hutan said:
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.
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Thanks for sharing the petition, @Hutan!
 
Ravn said:
I do think letters to MPs are a good idea in principle so thought right, I'm going to write one myself
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MyalgicE said:
Edit: if writing/talking to NZ Greens, show them what their Australian counterparts have committed to, here’s their policy document:
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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...
 
Ravn said:
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.
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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.
 
Hutan said:
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.
Click to expand...

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/
 
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...
 
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.
 
Ravn said:
who claims to have found that depression, anxiety and perfectionism all increase the risk of developing CFS after glandular fever.
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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.
 
Ravn said:
The May 11-17 edition has an article by Marc Wilson
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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

Michiel Tack said:
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?
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I don't think we have a thread on this yet? It would be good to have one. Good comments @Michiel Tack.
 
Ravn said:
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.
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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
 
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
 
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?):
The 12th of May is International ME Awareness Day. This year ANZMES (Associated NZ Myalgic Encephalomyelitis Society) is highlighting the remarkable progress made with research during this past year. Clinicians who treat this devastating illness, as well as researchers, feel that we may be very near an “eureka moment.” New researchers are increasingly being drawn into the field, having found that this complex illness has sparked their scientific curiosity.
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Later nuances somewhat:
While we are seeing great progress, we want to emphasise that much more research is needed. In order to achieve our goals, we need increased funding into the study of ME/CFS. This field has been traditionally under-funded in relation to the number of patients affected world-wide, both diagnosed and un-diagnosed. The economic and social impact of disability caused by ME/CFS in New Zealand is very significant, as is true in countries around the world. Our aim is to see that this catastrophic illness is one day relegated to the history books, as has been proving true with other illnesses, such as poliomyelitis.
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