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.

 

I woke up this morning to my best friend messaging me about this Even just getting the news out there to the public, this is real and this is serious.

 

Thanks a million, @Hutan! Your notes are very very much appreciated, super helpful

 

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

 

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.

 

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

 

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.

 

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.

 

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)"

https://www.cebm.net/events/getting...xperiences-of-putting-evidence-into-practice/

 

We need @dave30th to go and ask difficult questions of Fiona Godlee!

 

I think the evidence is that she is not getting better, at least at responding appropriately to matters which should concern her.

 

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]

 

One of articles accessible via tweet
https://twitter.com/user/status/1144005793274093568

 

The tweet directs to the Stuff article by Dr Cathy Stephenson from earlier in the month, not to the two Herald articles.
Isn't it great to have enough good articles all at once to potentially cause confusion

 

Thanks for correction. Great for advocacy- just need to keep the momentum going!