The Courier Mail: Australian scientists prove CFS is real and have discovered a test for it

Thanks Indigophoton. So it sounds like Ron just doesn't think that they're ready to publish something yet.

There were some bits about criticism in there that seemed a bit odd to me.

'Given the power to criticize'? Who should I request that power from? As someone who thinks it can be quite helpful to make anonymous criticisms on the internet, and that Janet would have done well to listen and respond to some of the criticisms being made, I wasn't too impressed by that part of the discussion.

I had thought that the OMF were planning to release data openly in order to encourage more criticism so that they could improve their work - that would seem a healthier attitude to criticism to me.

 

This is from Ron Davis' latest video (an automatic generated YouTube-transcript)
on publishing the nano-needle findings:

Apparently the data will soon be made accessible to researchers (according to this article (if it's ok to post an HR article here)).

 

If you're hitting a paywall when trying to read the article at the top of the thread, this worked for me:

1) Clear your browser cache/history
2) Google "sonya marshall-gradisnik"
3) When you see the results, click on "NEWS" at the top of the screen.
4) The first result should be a link to this story. Click on that.

It worked for me. Trying to access the link from inside s4me.info always took me to the subscription page. Once at the subscription page, you'll always go back there. That's why you need to clear your cache.
[ For me, even if I try to go back to the actual page after having just viewed it, I will be sent to the subscription page. It will be necessary to clear my browser history again. ]


P.S. If you search for "Sonya Marshall-Gradisnik" on Pubmed she has her name on 41 papers, the majority of them on ME/CFS. Four of those were published in 2017.

 

Sounds like useful feedback for the research group
- is it worth sending them a short email to tell them?
I remember finding statistical methods to be a frustrating add on at the end of an experiment as a student because I wasn't comfortable with the stats involved (statistics is not taught from first principles to non-specialists). I understood why we needed to apply them. I had learned how to apply it like a recipe but it (how the equation actually worked) wasn't something I truly understood and therefore I always felt clumsy and vulnerable in applying any of them. My understanding of the science was fine, as was my experimental method in general but the statistics was substandard, and I knew it. Having someone who did understand statistics go over the numbers, help make sure I was applying the method well, would have been awkwardly but gratefully received.
I remember wishing that there was someone in the team who specialised in stats to check us on that part. Contrary to some popular opinion, researchers at the student level can be outstandingly good at some aspects of the subject and quite incompetent in others. Perhaps that's something someone with this competency could offer to help?
Maybe I'm being over-idealistic but that's what I thought criticism was for: to _help_ researchers produce better science. I wonder if there are any statisticians floating about willing to offer an hour here or there to review studies pre-publication... there's a lot of this sort of support work that seems to be la king in publications these days. But maybe I'm getting old and rambling in my middle age.

 

I see that but if there is anything to report, any sort of 'finding', why not show appropriate controls as one would in a scientific presentation so that scientific viewers can judge the material? It does not need to take up any significant amount of time. Unless such controls have been done there isn't really any 'finding' anyway. It is not a problem of having enough to publish - all you need is enough to show a result, much as one often does in a preliminary communication at a conference. Why is the OMF any different from other research groups who present data and controls once they have them?

 

In his latest video, Dr. Davis does mention that they tested the nano-needle on 11 patients and 10 healthy controls and the results have been "absolutely consistent." After salt is added to the samples, all of the patients show an increase in impedance and none of the controls do.

[See video at 6:40]

https://www.youtube.com/watch?v=S7BclYH0DqM

Since this technology seems like it may still be in a proof of concept stage, I don't know if the patient and control samples would have been blinded in those tests.

 

There is a discussion of the article on Reddit as well
Chronic Fatigue Syndrome: Aussie scientists' breakthrough

 

My personal view is that NCNED do some interesting work even if the SNP studies are underpowered and I’m a fan of a wide range of research groups being involved rather than an eggs in one basket approach. When I’m back home from doing the Christmas trip to the in-laws I’ll try and dig out the patent application that seemed to indicate they’d managed to replicate the result (which would be far more statistically valid if they’d found one particular SNP in a focussed study compared to the first study’s look-at-everything approach).

The OMF stuff is promising but as yet unpublished, and I was pleased to hear on the latest OMF update that they do now plan to publish soon.

 

Has anyone tried Nifedipine which the Aussie researchers are interested in? I've tried Verapamil. Both are calcium channel blockers, but I can't seem to figure out what the difference is. I had experienced no effect. The pain specialist at the hospital gave me Verapamil after I had him read a study about a possible calcium issue in PWME. I benefit from drinking alcohol. Also tried nitrates with no luck.

 

I agree with Dr Davis in part and disagree in part. Can anonymous reviewers be nasty (or I would personally think of it more as having a negative motive)? Yes. But sometimes they are just right to criticise. Can anonymous ppl on the net be nasty (Or have a motive)? Yes. But sometimes they are just right to criticise. I think it's a bit dangerous to disregard all anonymous criticism on the basis that it's anonymous because you have to guard against your own natural, often subconscious, tendency to want to dismiss criticism and this mindset might make you prone to rejecting valid criticism rather than accepting it.

If he thinks he can't trust his results then he's absolutely right to look into that first. That seems a much better reason to delay publication to me.

 

It means they don't have meaningful results yet. It's all hype at this point.

 

@Joel, you can critisize in a respectful and constructive way, and you can critisize disrespectfully. Why choose the nasty way? As researcher you must address the reviewer's points nonetheless if you want your results published, so there is no need for disrespect.

Anonymity (e.g. in the internet) gives many people the possibility to be assholes. There are people who don't care about it but I don't like being addressed in a nasty and disrespectful manner. This shouldn't happen in a publishing process.

Our group never made the experience of disrespectful critic by the reviewer, though.

 

I'm sorry your offended but i don't think repeated grandiose statements and proclamations makes them special.

I completely agree that they should publish, i wrote a long synopsis of my opinion on this (was it here or on the other place, i forget) but their wanting to change the academic system by not publishing is not gonna fly and being innovative and spry is great but they still have to play the game to get the funds.

Edit: I found the posts i was referring to, do we have a policy about linking to the other place?

But over hyped rubbish gets so much support, especially in this thread. It is those of us who don't like it that are the problem.

I agree that we need a disease mechanism, desperately, it would even help with smashing the PACErs, i mean who will buy we can cure narcolepsy by pretending the patient doesn't have it
20 years ago it was psychosomatic, today...
If i understand your meaning your saying big names won't help, to a point i agree, but if you bring in people with the needed specialties it would certainly help, a disease mechanism will also help get the right specialties

I very much agree, they can certainly publish their nanoneedle research, as long as they don't get ahead of their data they should publish what they have so far (and perhaps stop publicly insulting the NIH, biting the hand they want to feed them and all).

 

No worries, i also repeat myself a lot
I agree that he probably would be retired otherwise, but some people never retire, i know more then a few people who like to stay sharp and are dedicated to what they do.

I disagree, the point of publication is to take your data and submit it to a journal to print for others to read and hopefully use and even expand upon. Until we discover all there is to know it will always be a good thing to disseminate acquired knowledge, though the format may evolve its hard to see this need to disseminate changing.
He is fully able to publish a paper introducing his nano needle, explaining what it does, how it works, the testing they have done so far and its potential. In fact he may be able to get a patent on it as well. If he starts claiming his results are sacrosanct then he will tarnish his own credibility, though with current events it seems credibility doesn't actually matter these days so he should get ahead of himself and he will be rewarded for doing so

I don't blame him either, i have also had complaints about them and the FDA, but the point is i am not trying to get money or a drug approved, so my opinions are not held against me. Insults get him further away from the money he wants to get which is the problem.

Hubris can strike at any time, though if he believed he can't find a solution so he won't try he certainly will never find it. The balance of it can be done but don't get cocky can is an issue. As i have also repeatedly said we do need many researchers working on this in different areas, but i don't like throwing away money when its so scarce on researchers who are blowing hot air, but as i stated i'm in the minority. Sometimes when you can't beat them you should join them i suppose

 

A short article also in Stirling Times.
Researchers may have come up with a test for chronic fatigue syndrome

 

Not sure I explained myself well. It is not an uncommon experience for those submitting papers to occasionally receive some nasty criticisms, and more commonly some polite but disingenuous criticisms. Some people are just dicks, and some have personal or professional dislike for you or your research aims. Handling this stuff can be unpleasant, frustrating, unfair. It shouldn't happen, but it does. However, there are also valid criticisms in the process. In my opinion it is not the fact that people are anonymous that causes the problem as plenty of anonymous reviewers (as well as anonymous people on the internet) behave well. And people usually have a reason for being nasty, an ulterior motive which means they'd still do it if it was an open process. Yes, being anonymous makes it easier to be an asshole in a way that you might not if things were more open, but that doesn't mean everyone acts the asshole because they are anonymous. If you start disregarding all anonymous input as invalid criticism then that's a dangerous approach in my view.

 

@Joel, I understand what you mean. Thanks for clarifying.

 

This is a good point and brings up the idea of legacy of an old man - it is not merely about any breakthroughs by Davis, but about all the people he can encourage to enter into the field, whether on his team or not.