Subtropical Island
Senior Member (Voting Rights)
Me too! somewhere I can vote for that?
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News from Aotearoa/New Zealand and the Pacific Islands
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Me too! somewhere I can vote for that?
Woolie
Senior Member
Don't know about Ros Vallings' bit, but I'm guessing this bit on its own is going to be enough to wind us up!
Prof Tate has been awarded some research funding...
http://www.brnz.ac.nz/news-events/brain-research-new-zealand-funds-covid-19-research-projects
http://www.brnz.ac.nz/news-events/brain-research-new-zealand-funds-covid-19-research-projects
Ravn
Senior Member (Voting Rights)
He had a brief cameo in a quite good feature on Long Covid.
They interviewed a couple of affected women who came across well but also illustrated that Long Covid has the same presentation problem as ME: they just looked way too healthy to garner the sympathy vote. Not meant as a criticism, just stating the conundrum we have. Do we appear in the media when at our best so we can think clearly and speak coherently or do we appear when at our worst which makes our suffering look more believable but also risks a major deterioration?
They interviewed an Auckland scientist planning on doing biomedical research and looking suitably sciency, and finally Prof Tate who snuck in a mention of ME in the context of his planned study which is probably the one he got funding for as per the above post.
Yeah. The TVNZ program tonight was exactly as I expected - this program very much covers issues in soundbites. So, the information is superficial, presented by two young doctors with nice white teeth and bouncy personalities.
The item was pretty good at getting the message across that CFS is a real, difficult problem that has been stigmatised. And it mentioned most of the symptoms including brain fog and problems with exercise, although not PEM. The presenter, and even the wife of the sports star who came down with ME/CFS referred to the disease over and over again as 'chronic fatigue'. Argh.
If you weren't watching closely, you could well have got the impression that Ritchie Barnett, the sports star, overcame his illness by going to the gym, even if sometimes he only went to do one pushup and then go home. And Dr Vallings made a pretty big thing of B12 being a treatment - she said around 70% of patients benefit from it. Unless there's been something very recent that I missed, there's no credible evidence for that. She also mentioned salt for orthostatic intolerance symptoms which she suggested could help some patients a lot. I know this is said by virtually every doctor who knows about orthostatic intolerance, but I do wonder if it really makes much difference for many of us.
The segment finished with a platitude that sufferers of chronic fatigue can rest easy with the knowledge that experts are on the job, unravelling the mystery.
Chezboo
Established Member (Voting Rights)
Thank you @Hutan for your synopsis of “The Check Up” program that aired tonight on TV in New Zealand. I very much agree with all of what you said. I am however, going to break my “lurker/but like posts” mode tonight to add a few of my favourite sound bites transcribed from the OnDemand function. I’m in ranty form (surprisingly cognitively energetic mood for which I am grateful), plus, I am genuinely fascinated to learn the ways in which other countries we don’t hear so much about present the disease in their respective media. (I was particularly interested reading a description of a TV program from Hungary a few days ago on this forum about Long Covid, so here is one about ME from NZ for anyone interested). I will emphasise that these are my highlights, as in my absolute favourite bits. There were other bits too, that where less annoying (so not as much fun). Please refer to Hutan’s excellent post above which gives a far better and less biased overview).
Introduction narration: “There is one medical condition that continues to challenge the medical profession worldwide” (sic)
Chirpy TV program narrator: “Chronic fatigue strikes young and old, fit and not (picture of an old man cradling his face with his hand), in fact those that push themselves very hard whether in work, study or sport are a particularly at risk group” (Note to self, if only I had been told of this type A personality achiever thing earlier, who knows what heights could have been reached before total collapse (sarcasm).
Chirpy TV program narrator: “Due to its complex nature, the illness is often misunderstood and regularly stigmatised” (I had always wondered just why it was so stigmatised, especially by the medical profession, thanks for the pithy explanation - sarcasm)
Chirpy TV program narrator: “Despite being notoriously difficult to diagnose, there are ways to combat chronic fatigue”
Rosamund Vallings is then shown and in summary talks about (in relation to combating chronic fatigue as mention by chirpy narrator):
setting up a management plan, medication for eg sleep, pain, POTS, plus salt for POTS. She rattles on about evidence of B12 benefiting up to 70% of people (not sure where this info comes from and to what degree of benefit she is referring to). Tailor to individual. Sounded pretty ok if you are not paying attention, but when you think about it, how many people benefit from salt and B12 and to what extent? I benefitted from b12 but actually, my condition has still worsened over the years? Salt is very nice in food, like I really love it but have no idea how it is supposed to have helped my life long POTS but that is N-1, so yeah)
Really though, my main gripe with the 5 minutes of “chronic fatigue” talk (besides just that over and over and over) was the no mention anywhere of people in bed in dark rooms, for decades, let alone how much worse it gets for the very severe. Hey ho.
Oh, and I wont get into the sports star who I saw (totally randomly, I never watch morning TV) a few weeks ago explaining…(and I am very much paraphrasing here, from someone with a proven history of hideous memory issues, which is to serve as a warning/caveat to what information follows)… how debilitating his experience was (he explained it pretty well from a mild point of view), and how eventually the patient groups he had sought help and solidarity with proved to be too negative for him, and how it was getting him down and how he managed to find his positivity again by avoiding those groups, and now although not 100% back to normal, is well and truly out of the quagmire and back to life for the most part. He did try to say there was nothing wrong with the support groups per say, and they have a right to express their feelings (or something to that effect), but he found that for him, he needed more positivity and once he chose this option, you know….onwards and upwards sort of thing. So there is that.
Edited: typos, and minor changes
Introduction narration: “There is one medical condition that continues to challenge the medical profession worldwide” (sic)
Chirpy TV program narrator: “Chronic fatigue strikes young and old, fit and not (picture of an old man cradling his face with his hand), in fact those that push themselves very hard whether in work, study or sport are a particularly at risk group” (Note to self, if only I had been told of this type A personality achiever thing earlier, who knows what heights could have been reached before total collapse (sarcasm).
Chirpy TV program narrator: “Due to its complex nature, the illness is often misunderstood and regularly stigmatised” (I had always wondered just why it was so stigmatised, especially by the medical profession, thanks for the pithy explanation - sarcasm)
Chirpy TV program narrator: “Despite being notoriously difficult to diagnose, there are ways to combat chronic fatigue”
Rosamund Vallings is then shown and in summary talks about (in relation to combating chronic fatigue as mention by chirpy narrator):
setting up a management plan, medication for eg sleep, pain, POTS, plus salt for POTS. She rattles on about evidence of B12 benefiting up to 70% of people (not sure where this info comes from and to what degree of benefit she is referring to). Tailor to individual. Sounded pretty ok if you are not paying attention, but when you think about it, how many people benefit from salt and B12 and to what extent? I benefitted from b12 but actually, my condition has still worsened over the years? Salt is very nice in food, like I really love it but have no idea how it is supposed to have helped my life long POTS but that is N-1, so yeah)
Really though, my main gripe with the 5 minutes of “chronic fatigue” talk (besides just that over and over and over) was the no mention anywhere of people in bed in dark rooms, for decades, let alone how much worse it gets for the very severe. Hey ho.
Oh, and I wont get into the sports star who I saw (totally randomly, I never watch morning TV) a few weeks ago explaining…(and I am very much paraphrasing here, from someone with a proven history of hideous memory issues, which is to serve as a warning/caveat to what information follows)… how debilitating his experience was (he explained it pretty well from a mild point of view), and how eventually the patient groups he had sought help and solidarity with proved to be too negative for him, and how it was getting him down and how he managed to find his positivity again by avoiding those groups, and now although not 100% back to normal, is well and truly out of the quagmire and back to life for the most part. He did try to say there was nothing wrong with the support groups per say, and they have a right to express their feelings (or something to that effect), but he found that for him, he needed more positivity and once he chose this option, you know….onwards and upwards sort of thing. So there is that.
Edited: typos, and minor changes
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With the constraints that the illness imposes and the great yawning void that is the need for advocacy, I don't think it's sustainable for each region in NZ to run its own charity, complete with comprehensive services such as moderated forums and independently developed resources. It's too easy to end up with small, unprofessional charities with all sorts of governance problems that do more harm than good.
The lack of knowledge about what ME/CFS is compounds the problem: there's no established solid body of knowledge and its hard to get good sensible doctors involved, so groups can easily start promoting all sorts of odd ideas. An example would be my region: not very long ago the regional charity had a website that counselled against using microwaves and aluminium pots and suggested the cause of ME/CFS is that some people have difficulties adapting to the stresses of modern day life. We did improve it, but not without greatly upsetting some.
Not to say that any of that has happened to WellME.
There needs to be leadership from ANZMES, to provide common services and support, with a few people in paid positions who can advocate to have the health system provide core medical services, rather than regional organisations led by a handful of exhausted people trying to fund and run such services. It's not as if New Zealand is very big, and telehealth initiatives are particularly well suited to ME/CFS. Unfortunately, I don't think we will see much progress until some of the key people in ANZMES retire.
Yes, he's a nice man, and he doesn't downplay how hard he found having 'chronic fatigue'. It's great that he is willing to front up and say he has the illness. But he's a bit of a double edged sword as far as being the national celebrity spokesperson for ME/CFS. Coming from a high performance sport culture, I think he just can't help but frame things in a 'strength of will overcomes all' sort of way, even though he is definitely not completely recovered. So, the messages end up being quite mixed.
Chezboo
Established Member (Voting Rights)
Yes, I totally agree. Clearly I am not a Kiwi (not knowing who this famous sporty man is and perhaps even, the sin of not even holding so much as a momentary interest in any sport from any country, ever) However, I find myself domiciled in New Zealand currently as is evident, so I have no idea of who this man is other than he did actually seem really lovely and tried to explain how terrible "CFS" was (from memory). But these celebrity spokespeople often as you say, run the risk of being a double edged sword. His messaging is unfortunately very mixed (and that's being positively kind) but it is obvious he is coming from a good place. Also, I have recounted the interview from my terrible memory, so please no one take it as exactly what he said or even what he was loosely saying. For information for anyone interested, I have discovered that you can google his name and CFS and it will come up on facebook from the Breakfast TV program.
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The item starts at 8:13 on this recording https://www.tvnz.co.nz/shows/the-check-up/episodes/s2-e7
As mentioned above the item was more about LongCovid,
Related article and video is https://www.newshub.co.nz/home/new-...ll-suffering-long-term-effects-a-year-on.html
Carolyn Wilshire
Senior Member (Voting Rights)
Hi all, for anyone around the Wellington region who has the spoons to travel to Vic Uni, and listen to an hour-long talk, I though I'd let you know about the talk below. While the focus will be on improving Psychology research, I'll also be recounting the entire story.
Title: The PACE trial for chronic fatigue syndrome: Lessons for clinical psychological science
When: Friday March 27, 12-1pm
Where: Victoria University of Wellington School of Psychology, Kelburn campus. Easterfield building, room EA407.
Abstract: The PACE trial was a major clinical trial that tested the efficacy of two “psychological” interventions for chronic fatigue syndrome: graded exercise therapy and CBT. Reports from the trial concluded that both treatments were highly effective in reducing the symptoms of chronic fatigue syndrome, and led to full recovery in around a fifth of patients. In this talk, I tell the story of how I became involved in a reanalysis of the data from that trial. I will describe the findings from the reanalysis and our conclusions. I will discuss the wider issues that our work has raised, concerning the importance of preregistration and data sharing in clinical trials, the difficulties associated with evaluating interventions that cannot be fully blinded, and the challenges of developing appropriate control conditions. I will argue that currently accepted methodologies for evaluating psychological interventions allow too much room for false positive findings. I will close by suggesting some ways we might address this problem in the future.
The Easterfield building is the one with the bookshop on the ground floor. Enter through the main entrance just next to the bookshop, lifts are on the right, the room is on the fifth floor.
There will likely to Zoom access and a recording made too, for those not up to attending in person.
Title: The PACE trial for chronic fatigue syndrome: Lessons for clinical psychological science
When: Friday March 27, 12-1pm
Where: Victoria University of Wellington School of Psychology, Kelburn campus. Easterfield building, room EA407.
Abstract: The PACE trial was a major clinical trial that tested the efficacy of two “psychological” interventions for chronic fatigue syndrome: graded exercise therapy and CBT. Reports from the trial concluded that both treatments were highly effective in reducing the symptoms of chronic fatigue syndrome, and led to full recovery in around a fifth of patients. In this talk, I tell the story of how I became involved in a reanalysis of the data from that trial. I will describe the findings from the reanalysis and our conclusions. I will discuss the wider issues that our work has raised, concerning the importance of preregistration and data sharing in clinical trials, the difficulties associated with evaluating interventions that cannot be fully blinded, and the challenges of developing appropriate control conditions. I will argue that currently accepted methodologies for evaluating psychological interventions allow too much room for false positive findings. I will close by suggesting some ways we might address this problem in the future.
The Easterfield building is the one with the bookshop on the ground floor. Enter through the main entrance just next to the bookshop, lifts are on the right, the room is on the fifth floor.
There will likely to Zoom access and a recording made too, for those not up to attending in person.
Yes please.
Amazing to have this happening. Thanks so much @Carolyn Wilshire for this session, and for all the related work before!
I do hope there will be a recording and transcript that can be made available to all. Your work on this is so important. Thank you.