[Twitter] Nanoneedle update Janet Dafoe - 15th June 2021

Hopeful1976

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Just in case nobody's seen this, can't see any mention of another thread.

Hi. How come none of the money raised by the omf goes on this very very important research? I honestly don't understand. They raise a lot; yet it seems their nano needle study gets nothing, when to me, it seems one of the most important on finding us a possible treatment for this horrid disease.
 

Hopeful1976

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I'd actually really like to know why. I first heard about the nano needle years ago (2015?), but there has been no development. I've heard Ron say in his videos it is a very laboured process, and with development, it could process many more samples, yet it is never developed. I'm honestly, genuinely confused by its lack of movement, given how much the OMF are able to raise and the donations they receive (I remember one year them getting 5million from pine, plus another million from an anonymous). Why is it that this money is not put onto the nano needle research?? I for one want to know. We give donations to the OMF for precisely this research, yet it seems none of it gets to Ron. Is this the case??
 

BrightCandle

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As someone who donates to the OMF this is not the sort of holdup and response I expect to see. I do not care about their Tenure, solve the disease and you will get flooded with more success than they can handle, until that day however its hard graft fighting the system that wont accept the disease exists using patient money. Unhappy about this entire chain of responses.
 

Abrin

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I wish Ron and Janet Dafoe could find someone who could translate academia speak to layman speak for them when it comes to communicating with the greater ME/CFS community about OMF over social media and on other platforms.

While I completely understand what Janet Dafoe is saying and why things are currently stalled, I can also completely understand why what she is saying would be an unsatisfactory answer to the majority of people who are unfamiliar with how living in 'the ivory tower' works.
 

junkcrap50

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I've started thinking this, sadly. I'm really really confused by it all I see omf getting load of big donations, like millions, but still no movement on the nano needle. There is no logic to this whatsoever.
Do they really get millions of dollars in donations? Like every / each year? How much do they have sitting in their coffers? I thought they always had a bare cupboard as whatever they recieve, they sent out to researchers.

Who cares about peer reviewing blah blah. If the money is donated to this specific research, can't the research just be done? I just want us to have an answer. Once that answer is found, then stand up and reap the applause that will come! Surely??!
In my experience, Professors always spend most / almost all their time writing grants, seeking funding when "doing research." So, how can it be said that a professor can't do this research b/c he's seeking grants. When that's the same behavior and work / exactly what he would be doing anyway if he had the research ongoing anyway. Perhaps I am wrong and this is different when/if a professor doesn't have a lab, has literally zero funding (even for consumable lab supplies (gloves, etc.)), or has no one working under/with him. Is there not anything a free undergrad can do?
 
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Just guessing that they already allocated that money to other projects that existed before or at the same time as nanoneedle was invented, they were probably confident that they would get government funding for the nanoneedle project, so they felt it was the best strategy. I'm happy that we got an answer finally on this.
 
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Folks,
this is not a 1billion $$$ research project. They have to choose wisely where to spend the money. 5 millions, yes, but that's really not that much when it comes to research. Especially if you have to focus on many things. This is a multi-systemic disease of unknown etiology. Publishing and getting peer-reviewed is important. If you want the nano-needle as a medical diagnostic tool, it has succeed studies, just like drugs.
 

Hopeful1976

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I just don't get it. I hear you saying maybe the money is needed/was allocated elsewhere, that publishing is essential, that 5 million isnt that much. But. Ron keeps bringing the nano needle up as soooooo important, not only as a diagnostic, but also as a method of studying drugs to see if there's anything out there that could help us. This was over 5 years ago I first heard about it. If its not so important to warrant the omf investing in some of its 'coffers', then why does 1: Ron feel it's a really important piece of research, 2: we, the donators want the research done. I am totally fed up of all this.
 

Hopeful1976

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Folks,
this is not a 1billion $$$ research project. They have to choose wisely where to spend the money. 5 millions, yes, but that's really not that much when it comes to research. Especially if you have to focus on many things. This is a multi-systemic disease of unknown etiology. Publishing and getting peer-reviewed is important. If you want the nano-needle as a medical diagnostic tool, it has succeed studies, just like drugs.
Choose wisely? Surely this is a wise choice?!? It could diagnose m.e. It shows, objectively, that something very physical is amiss. It has the capacity to discover drugs to help us. I for one think it is a very wise piece of research to use our money for!