News from Aotearoa/New Zealand and the Pacific Islands

I hope this nanoneedle works out or else I fear it could be quite unhelpful... given the series of false leads there have been around CFS I'd want to be more cautious until we had independent replication, particularly as I don't see much cost to being extra cautious.
 
Rough notes - not perfect.
Interviewer: CFS is a debilitating, mysterious and often minimalised illness. Many people with it complain that their condition is regarded as imaginary. There has been a lack of a reliable test. Dr Ron Davis has identified a diagnostic test, in a small pilot study.

In 2013 Davis was ranked amongst greatest living inventors, many advances in the field of genetics can be traced back to him. When his son Whitney became sick, he turned his attention to CFS.


Davis: Patients don't look sick but are severely affected. On standard tests they seem perfectly healthy. Whitney is bed-bound, tube-fed and yet on standard tests he looks healthy. The Institute of Medicine suggested that 80% of patients are undiagnosed. Currently diagnosis requires experts and there aren't many experts. A diagnostic test will help validate patients and help doctors figure things out.

Whitney took several years to get diagnosed and that was only because he worked at it and I encouraged him. Initially we thought that doctors would figure it out. I re-focussed my work on ME/CFS, wrote multiple grants without success. Teamed up with OMF, a charity, that could provide funding.

The disease is multi-system, brain, immune, gut. Complicated. But I'm optimistic that we can cure this disease.


Interviewer: this new diagnostic tool..


Davis: Had already developed this device, chip size is so small you can't really see them, they are on a wafer. It was being tested for use in assessing the utility of drugs acting against cancer and bacteria. Saw that patients can't produce energy. Adding salt to the cells required the cells to use energy pumping the salt out, so it stresses the cells.

Need to make the device 'next-generation', closed in (i.e. to make it user-friendly, more robust). The device hasn't been tested on other diseases.

There are 8 other devices, not so far along. Hopefully they can be used to separate CFS from other diseases.

We have already found a couple of drugs that seem to help the cells survive the salt stress. We want to find an already approved drug that helps, to speed the process.

Next thing is to find the cause. We are collecting a huge amount of data from patients. Have found some genetic abnormalities. Of the 66 patients investigated, all have the same mutation. You observe, then ask 'what's causing that?' and iteratively track back to the primary cause.

It doesn't appear that we will need to continuously treat or that there is permanent damage. We have one patient who was bed bound and she is now over it; she can run 10 miles a day.


Interviewer: A listener has responded. They thank you Ron for your efforts, especially when they have taken you away from the care of your son. Has a son, bed-bound who has missed his secondary school years. Medical training continues to perpetuate the idea that CFS/ME is psychological issue.


Davis: Yes, but things are improving. Scientific data shows it's not psychosomatic. There are many labs working on this, finding molecular abnormalities that cannot be caused simply by thinking. That view that the condition is psychosomatic, it's absolutely incorrect, I would call it barbaric. Even in 2015, the Institute of Medicine report said that it is clearly not psychosomatic. We need to update the thinking and we then need to find out how to treat. Initially, we can treat the symptoms, and most doctors can treat the symptoms. Many patients seem to have mast cell activation - and there are drugs to alleviate that.


Interviewer: What can patients do?


Davis: Advocacy. Phoenix Rising site, Open Medicine Foundation. We run a symposium every year - live-streamed and archived on You Tube. We have just established another collaborative centre on Harvard, they have a big hospital there so work can be done with patients. And we have a new site in Sweden, they are doing spinal taps. There is progress, but we need money.
 
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The Radio National interviewer followed up the interview, saying that they had had lots of feedback from sufferers of CFS. The interviewer mentioned a communication from the Auckland patient support group, noting that they have a registered nurse available to provide support and giving out an 0800 phone number.

Excellent thinking from that group.
 
Also posting here and on the NZ Awareness group FB page.
Partial verbatim transcript of the interview from approximately point 14:05. Merely edited for umms and words in brackets are inserted for clarity.
“We’ve had the NIH the National Institute of Health and the Centre for Disease Control who view it as a psychosomatic disease by many, many people in those agencies. But the scientific data says that’s not true. And there’s now tremendous amounts of scientific data. Our diagnostic test is only one of them. Many labs have shown that there are a lot of abnormalities that are molecular abnormalities that cannot be caused by simply thinking. And that whole idea [that the illness is psychosomatic] needs be be sponged out. That is absolutely incorrect in fact I would call it barbaric. And to deal with patients with this kinda concept [that the disease is psychosomatic] is malpractice. And they need to stop it.” - Dr Ron Davis interview with Radio NZ 25th June, 2019.
 
Articles in the New Zealand Herald online by journalist Natalie Akoorie. (There's a paywall after the first paragraph or so)

https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12237579

Children with ME/CFS get left behind in New Zealand's education system - psychologist - NZ Herald
A debilitating chronic illness that affects 20,000 New Zealanders is likely to be causing large numbers of school absenteeism in teenagers. Wellington psychologist Rose Silvester, whose son has ...



https://www.nzherald.co.nz/health/news/article.cfm?c_id=204&objectid=12233752

Debate rages on chronic illness ME: Research derailed by idea it is psychological condition
It's estimated 20,000 New Zealanders are 'missing ' because of the disease.
 
You beat me to it @Hutan, posting the two Herald pieces. Does anyone here have a NZ Herald sub and is able to read them?

FB wisdom has it that tomorrow's print edition will have shorter versions of one or both. If that's correct I will be able to access those via my library PressReader access but infuriatingly I can't get the online edition that way.
 
Merged thread

Radio New Zealand: Chronic fatigue syndrome blood test - new hope for sufferers?

Radio interview with Dr Ron Davis

https://www.rnz.co.nz/national/prog...ue-syndrome-blood-test-new-hope-for-sufferers

Pioneering geneticist Dr Ron Davis with researchers at Stanford University thinks he may have discovered a blood test that can flag chronic fatigue syndrome (CFYS) / Myalgic encephalomyelitis (ME).

If so it would be the breakthrough that sufferers have been seeking for decades - proof that it exists. While not much is known about CFS many sufferers complain that their condition is often regarded as imaginary, in part due to there being no test for it. Currently a diagnosis is based on the appearance of symptoms like extreme exhaustion, sensitivity to light and unexplained pain.

In New Zealand it's estimated that there are around 20 thousand people with chronic fatigue syndrome. Dr Ron Davis is the Director of the Stanford Genome Technology Center with a personal reason to find a cure as his 35 year old son Whitney suffers from a debilitating form of the disease.

Interview - https://www.rnz.co.nz/audio/player?audio_id=2018701196
 
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Glad to see this interview, especially in light of the current BPS propoganda in NZ.

Perhaps a subtle message in the write up about the interview that Whitney Dafoe suffers from a "debilitating form of the disease". IMHO, Whitney suffers from a very severe form of the disease, but that does not mean that less severe forms are not debilitating. People with mild, moderate and severe forms of ME are also debilitated. It would be a relief indeed if more journalists got things right about ME.
 
Ravn said:
You beat me to it @Hutan, posting the two Herald pieces. Does anyone here have a NZ Herald sub and is able to read them?

FB wisdom has it that tomorrow's print edition will have shorter versions of one or both. If that's correct I will be able to access those via my library PressReader access but infuriatingly I can't get the online edition that way.
Click to expand...
That PressReader App must be the least user-friendly app ever developed to read anything!

But I did manage to read the articles - the shortened print versions, though one of them is still quite long - and both paint an excellent picture of how severe and debilitating ME can be, and of all the hurdles, including patient-blaming, PwME and carers face in getting support of any kind.

Especially the longer article is a wide-ranging piece and definitely worth reading.

I'm not entirely sure people who've never heard of PACE would quite understand what that's all about, just based on the articles, but it's probably asking too much to explain PACE in a few sentences. I think the message that it was bad science, and that current treatments are based on that bad science, probably gets through and that's the main thing.

I found Philida Bunkle's comments particularly interesting as she placed the hurdles faced by PwME in a wider context: "Chronic illness is not seen as valid, she said. 'The assumption of the world we live in is that your health is your responsibility, your fault. You fix it.'"

Special thanks to Julie Marshall who courageouly talks about her personal challenges. Thanks, too, to all the other interviewees, Rose Sylvester, Arran Culver, Carolyn Wilshire and Phillida Bunkle (I hope I haven't forgotten anyone) for their thoughtful analysis of the situation, and to the journalist, Natalie, who must have done a serious crash course on ME (unless she had prior knowledge).

One minor quibble though. The bottom bar of the printed version gives the usual advice on how to help manage ME: reduce stress, and eat and sleep well. Drives me nuts! Sure, technically it's correct. You probably will feel worse if you eat and sleep badly and are under a lot of stress. BUT. The general public, health professionals included, will invariably interpret this as meaning your ME can actually get better if you don't stress, and eat and sleep properly. And that's just BS. Also, as the article itself demonstrates very clearly, just having ME and dealing with all the disbelief and with all the hurdles our so-called support services put in your way, well, all that pretty much guarantees stress. And it's not like many of us sleep badly on purpose. Arrgh!

ETA: If anyone wants to track down the print version of the articles, that's the NZ Herald edition of 26 June 2019, page A5 for the shorter school absence article and pages A14-15 for the longer feature article.
 
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Fiona Godlee will be in NZ later this year

"
Getting Better with Evidence
10 December 2019, New Zealand

Details
8:00 am, December 10, 2019 — 5:30 pm, December 10, 2019

Venue
University of Auckland (Grafton Campus)"
This is a New Zealand first, bringing the internationally acclaimed EBMLive to Auckland.

The conference will have three themes:
  • Gathering and disseminating better evidence
  • Translating evidence into action
  • Building solutions, the roles of big data, randomised control trials (RCTs) & real-world evidence
The programme will include keynote presentations and concurrent workshops, delivered by leading international and local experts, with a focus on the needs of the New Zealand audience, including increasing equity and addressing over-diagnosis and over-treatment.

Confirmed keynote speakers include:

Click to expand...
https://www.cebm.net/events/getting...xperiences-of-putting-evidence-into-practice/
 
Ravn said:
That PressReader App must be the least user-friendly app ever developed to read anything!

But I did manage to read the articles - the shortened print versions, though one of them is still quite long - and both paint an excellent picture of how severe and debilitating ME can be, and of all the hurdles, including patient-blaming, PwME and carers face in getting support of any kind.

Especially the longer article is a wide-ranging piece and definitely worth reading.

I'm not entirely sure people who've never heard of PACE would quite understand what that's all about, just based on the articles, but it's probably asking too much to explain PACE in a few sentences. I think the message that it was bad science, and that current treatments are based on that bad science, probably gets through and that's the main thing.

I found Philida Bunkle's comments particularly interesting as she placed the hurdles faced by PwME in a wider context: "Chronic illness is not seen as valid, she said. 'The assumption of the world we live in is that your health is your responsibility, your fault. You fix it.'"

Special thanks to Julie Marshall who courageouly talks about her personal challenges. Thanks, too, to all the other interviewees, Rose Sylvester, Arran Culver, Carolyn Wilshire and Phillida Bunkle (I hope I haven't forgotten anyone) for their thoughtful analysis of the situation, and to the journalist, Natalie, who must have done a serious crash course on ME (unless she had prior knowledge).

One minor quibble though. The bottom bar of the printed version gives the usual advice on how to help manage ME: reduce stress, and eat and sleep well. Drives me nuts! Sure, technically it's correct. You probably will feel worse if you eat and sleep badly and are under a lot of stress. BUT. The general public, health professionals included, will invariably interpret this as meaning your ME can actually get better if you don't stress, and eat and sleep properly. And that's just BS. Also, as the article itself demonstrates very clearly, just having ME and dealing with all the disbelief and with all the hurdles our so-called support services put in your way, well, all that pretty much guarantees stress. And it's not like many of us sleep badly on purpose. Arrgh!

ETA: If anyone wants to track down the print version of the articles, that's the NZ Herald edition of 26 June 2019, page A5 for the shorter school absence article and pages A14-15 for the longer feature article.
Click to expand...

Why is every apparently good article behind a paywall and all the abusive junk free for all?

[Economics, yup. But it doesn’t stop my frustration]

Thanks for the commentary/summary!
Helps to know there’s some information out there that doesn’t suggest that what I really need is the Lightning Process.

[edited to remove unnecessary personal detail]
 
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