News from Aotearoa/New Zealand and the Pacific Islands

RoseE said:
A NZer has reached out for advice on challenging their Insurance company's request that they use GET and CBT for a period.
Are there any threads here in s4me of how people have challenged that?
What evidence /research would this forum recommend is provided to argue that these treatments are not appropriate for people with ME/CFS ?
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This thread has a number of useful publications listed:
https://www.s4me.info/threads/articles-that-are-critical-of-cbt-get.63/

This thread discusses the evidence:
https://www.s4me.info/threads/if-i-...ho-and-which-would-you-use.12852/#post-226037
and suggests the IOM (although now becoming a bit old); the CDC website (great in parts, but some comments a bit ambiguous if trying to refute CBT and GET); and the New York State Department of Health website.
Also http://workwellfoundation.org/wp-co...T-Letter-to-Health-Care-Providers-v4-30-2.pdf

The NZ Canterbury HealthPathway might be useful, given it is a recent update of treatment advice to NZ doctors. And of course the letter to the NZ GP (News from New Zealand and the Pacific Islands), the Emerge website and the ThinkGP CME, all of which you are aware of.

I'm happy to try to help the person if they want to get in touch.

Edited to add some links.
 
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I saw an immunologist last week, and he told me Pharmac is likely to stop funding my Chromoglycate inhaler medication from October-ish and it will be import only. If anyone else in NZ uses it, you might want to stockpile some as far as you can.

Sigh. It really helps me a lot. If I can get some energy together I might write to my MP, who will doubtless pass the buck..
 
M.E. Awareness NZ has been in touch with Prof Tate to congratulate him on his 'retirement', and enquire about the future of the research into ME/CFS at Otago Uni.

A summary of his reply...
  • His research programme has been approved till the end of 2021. He hopes to continue with research after that (when he will be 75).
  • They still need more funding for 2021, (he is very grateful for the donations that have been made over the last 2 years). With more funding they would be able to keep employing an epigentic expert.
  • They have submitted two papers for publication recently.
  • Prof Tate will continue to support ME in NZ in any way he can.
  • Dr Eiren Sweetman, who was managing the ME/CFS research at Otago, has recent moved away from Dunedin and will be continuing to work on manuscripts of studies already completed. Next future steps for her are uncertain at this point.
  • Prof Tate will continue to teach third year medical students at Otago Uni. And he says he always gets a strong supportive student response year after year.
Highlighting Prof Tate's forward research vision :
  • a post -exercise malaise study at Otago (with involvement of expert exercise physiologist Dr Lynette Hodges at Massey) to determine (a) whether there are epigenetic changes that reflect changed gene activity that might explain an inability to re- exercise and (b) whether there are observable reduced mitochondrial functions in energy production after exercise.
  • develop our stress related neuro inflammation model in the hypothalamus to investigate whether ME patients fail to regulate tryptophan levels well that could lead to excessive serotonin production in the brain - a syndrome know to have many overlapping symptoms with ME/CFS.
  • measure markers of damaging oxidative stress - in DNA, proteins and lipids of ME/CFS patients - and determine they can be modulated by antioxidants.
 
Heads up to anyone in the Tauranga region and fit enough to attend meetings.

The Neurological Foundation is running a series of events, one of which is a talk by Dr Joanne Lin called "Uncovering the secrets of neuroinflammation", on 22 October.

Dr Lin used to work in Jarred Younger's lab, including on chronic fatigue syndrome [sic]. Unfortunately though unsurprisingly it sounds as though in NZ her focus is no longer on ME. However what she's trying to do is "investigating MRI techniques for measuring brain inflammation in human participants" because right now "there are no accepted methods that can reliably detect these inflammatory processes in humans". So some fairly fundamental stuff which could well come in useful for us eventually.

If anyone can make it to the meeting there might be an opportunity to ask what it would take to get her back into ME research, or how her current research could benefit ME down the track.

[Quotes and info from the paper newsletter of the Neurological Foundation, the website doesn't show this event yet, eventually details should show here: https://neurological.org.nz/get-involved/events/2020/Oct]

UPDATE: registration details and other info now on the website
https://neurological.org.nz/get-involved/events/2020/oct/uncovering-the-secrets-neuroinflammation
 
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There was a brief piece on TVNZ this evening linking the long term effects of Covid-19 with ME/CFS, by reporter Thomas Mead. @Carolyn Wilshire was great, saying that people should not be told that it is all in their head. Prof Tate was interviewed in his lab, with sciencey-looking pipetting going on. And there was a young woman with ME/CFS, interviewed in her bed, saying that people need to be kind to themselves. The reporter mentioned time frames that included years. I didn't catch all of it, but it seemed helpful and normalising a non-psychogenic view of both ME/CFS and post-Covid symptoms. Thanks to all involved.

Oh, and Prof Garner appeared too.
 
Hutan said:
There was a brief piece on TVNZ this evening linking the long term effects of Covid-19 with ME/CFS, by reporter Thomas Mead. @Carolyn Wilshire was great, saying that people should not be told that it is all in their head. Prof Tate was interviewed in his lab, with sciencey-looking pipetting going on. And there was a young woman with ME/CFS, interviewed in her bed, saying that people need to be kind to themselves. The reporter mentioned time frames that included years. I didn't catch all of it, but it seemed helpful and normalising a non-psychogenic view of both ME/CFS and post-Covid symptoms. Thanks to all involved.

Oh, and Prof Garner appeared too.
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Yes, it was pretty good. The reporter committed a couple of 'chronic fatigue's - somehow that seems to be unavoidable - but apart from that it was good. Even made a reasonable fist of explaining PEM which isn't easy in a brief TV piece.
 
RoseE said:
M.E. Awareness NZ has been in touch with Prof Tate to congratulate him on his 'retirement', and enquire about the future of the research into ME/CFS at Otago Uni.
"-----
Highlighting Prof Tate's forward research vision :
  • a post -exercise malaise study at Otago (with involvement of expert exercise physiologist Dr Lynette Hodges at Massey) to determine (a) whether there are epigenetic changes that reflect changed gene activity that might explain an inability to re- exercise and (b) whether there are observable reduced mitochondrial functions in energy production after exercise.
  • develop our stress related neuro inflammation model in the hypothalamus to investigate whether ME patients fail to regulate tryptophan levels well that could lead to excessive serotonin production in the brain - a syndrome know to have many overlapping symptoms with ME/CFS.
  • measure markers of damaging oxidative stress - in DNA, proteins and lipids of ME/CFS patients - and determine they can be modulated by antioxidants.
Click to expand...

Tryptophan is interesting as this is already the focus of research - kynurinine pathway: 1DO2 Robert Phair (metabolic trap) and Jonas Bergquist is looking at kynurinine metabolism.

oxidative stress - Shungua, a member of Maureen Hanson's group, is running a study on the use of N-Acetylcysteine to increase brain Glutathione levels - glutathione is a key antioxidant. Thread here
https://www.s4me.info/threads/new-y...atigue-syndrome-nac-me-cfs.16825/#post-288454

Epigenetics seems good too.

I wonder if we really need the results from a large GWAS study i.e. to objectively identify underlying causes/contributory factors re ME? @Simon M @Michiel Tack
 
Louise Thornley has written another article for RNZ on Covid-19 and relates this to PEM in ME.

"Gez Medinger used to run 90kms every week. Now he's exhausted by everyday tasks: taking out the rubbish, browsing the Internet, sometimes even just texting."

"While it's still early in the understanding of Covid-19 illness, it's feasible that a subset of people with post-coronavirus problems may be diagnosed with ME in future, as viruses are a common trigger for ME."

https://www.rnz.co.nz/news/on-the-i...ght-at-the-end-of-the-tunnel-just-isn-t-there
 
RoseE said:
Louise Thornley has written another article for RNZ on Covid-19 and relates this to PEM in ME.

"Gez Medinger used to run 90kms every week. Now he's exhausted by everyday tasks: taking out the rubbish, browsing the Internet, sometimes even just texting."

"While it's still early in the understanding of Covid-19 illness, it's feasible that a subset of people with post-coronavirus problems may be diagnosed with ME in future, as viruses are a common trigger for ME."

https://www.rnz.co.nz/news/on-the-i...ght-at-the-end-of-the-tunnel-just-isn-t-there
Click to expand...
Thanks Louise, whoever, wherever you are.
 
Hutan said:
There was a brief piece on TVNZ this evening linking the long term effects of Covid-19 with ME/CFS, by reporter Thomas Mead. @Carolyn Wilshire was great, saying that people should not be told that it is all in their head. Prof Tate was interviewed in his lab, with sciencey-looking pipetting going on. And there was a young woman with ME/CFS, interviewed in her bed, saying that people need to be kind to themselves. The reporter mentioned time frames that included years. I didn't catch all of it, but it seemed helpful and normalising a non-psychogenic view of both ME/CFS and post-Covid symptoms. Thanks to all involved.
Click to expand...
Yes, I was a little alarmed about the "chronic fatigue", but at least he said out loud the thing about PEM (which I think quite a few of us pushed heavily).

There was so much more he could have done with the topic I thought. Made the link clearer between long Covid and MECFS. I gave him lots of stats on what we know about the incidence of long-term functional impairment after EVB etc. (those Hickie prospective studies), and came up with an estimate of what proportion of those who get Coronavirus will go on to have long-term debilitation (10-15% of those who were experienced severe acute symptoms, I thought). But none of that got in.

Again, there's this assumption that recovery just takes a log time, but people here know that recovery is rare and many never recover their former levels of function.

I also have a feeling I've seen that clip of the young woman before somewhere....
 
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Apologies for the late notice...

All are welcome to ME Auckland's online AGM tomorrow (Sat, 10th Oct 1:30pm), that will include a presentation by guest speaker Dr Lynette Hodges.

Dr Hodges is a Senior Lecturer, School of Sport, Exercise and Nutrition, at Massey University, NZ and undertakes research into exercise and post-exertional malaise in #MECFS (Myalgic Encephalomyelitis /Chronic Fatigue Syndrome).

The talk will be held via Zoom. Simply click the link below to join (if joining from mobile, it may ask you to download the Zoom app).
Details below
https://us02web.zoom.us/j/87641407370
Meeting ID: 876 4140 7370

This event is organised by the team at www.meauckland.org.nz.
There are plans to release a recording of Dr Hodges presentation.

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