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

[Oliver3]

Maybe this is why there isn't much money going out to fund projects. About half of all money on hand are tied up with restrictions from donors to specific projects. See table below from OMF's 2020 Financial Statements:
View attachment 43520
In sum, it is a lot of money whose total could fund several projects. But when it is divided up with small amounts reserved for different projects, each project amount is insufficient to fund a full study.

Let's not let the truth get in the way if slander eh?

 

[lint7]

There really does need to be more government funding. Obama threw a billion dollars at Zika Virus research but CFS gets almost nothing in comparison.

 

[Alvin2]

I do wonder why so little is going into the nanoneedle, but they are not talking.
Though i'm not inclined to attack them for it like some have done in this thread. But i would like an answer, it does seem like it would explain a lot of the downstream effects and would be a key piece if verified. And could lead upstream to cause and potentially treatment.

Maybe this is why there isn't much money going out to fund projects. About half of all money on hand are tied up with restrictions from donors to specific projects. See table below from OMF's 2020 Financial Statements:
View attachment 43520
In sum, it is a lot of money whose total could fund several projects. But when it is divided up with small amounts reserved for different projects, each project amount is insufficient to fund a full study.

An interesting observation. It does make sense that at least some of their money is being donated for specific research, but they also have money that is not earmarked upon donation.
I just got an e-mail that Amazon donated a few thousand based on their smile campaign. Also there are fundraising drives, may momentum, triple giving and so on.

 

[Boba]

This ist really not a lot of money. I was working in a small design studio with Robots etc. A small project was 300k and bigger projects 1,5Mio. This was just some design stuff for big companies. If you need to develop new tools or pay good people the money is gone in a sec.

 

[Martin aka paused||M.E.]

This ist really not a lot of money. I was working in a small design studio with Robots etc. A small project was 300k and bigger projects 1,5Mio. This was just some design stuff for big companies. If you need to develop new tools or pay good people the money is gone in a sec.

That's what I'm talking about! In terms of research especially such a big project and such a complex disease 30mio in half a decade is almost nothing... We need more money.
I know many here disagree with me, but OMF looks for the fastest treatments... If we wait for all the others who theorize about vagus nerve infections and so on without lab tests we have to wait for another 20 years! And I find it hard to believe that some of you question the dedication of OMF to find a treatment as fast as possible. Ron and Linda are personally affected by this disease.
They are testing now the metabolic trap on yeast and human cells with success. I think that's worth the little money they spend on it.
We are all in the same boat. I'm very severe since February 2018, live in poverty, need diapers can hardly move and burned my GABA(A) with benzos bc of brutal suffering when I was extremely severe. I need fast help too!!!
But you know: these are the best scientists that we've ever had and they are working very hard to help us. And of course I have my own thoughts about the disease (Dr. Chia's work, mold, immune priming like @Hip). But I can't know better than those who do nothing else but search for answers.
Btw I assume that nobody here is educated and experienced as well as them in terms of research, medicine and biochemistry and pharmacology.
So please, don't stop donating.
I forwarded your concerns to OMF and they take it serious.
Just my 2 cents.
Now you can criticise me again if you want.
Martin

 

[Oliver3]

That's what I'm talking about! In terms of research especially such a big project and such a complex disease 30mio in half a decade is almost nothing... We need more money.
I know many here disagree with me, but OMF looks for the fastest treatments... If we wait for all the others who theorize about vagus nerve infections and so on without lab tests we have to wait for another 20 years! And I find it hard to believe that some of you question the dedication of OMF to find a treatment as fast as possible. Ron and Linda are personally affected by this disease.
They are testing now the metabolic trap on yeast and human cells with success. I think that's worth the little money they spend on it.
We are all in the same boat. I'm very severe since February 2018, live in poverty, need diapers can hardly move and burned my GABA(A) with benzos bc of brutal suffering when I was extremely severe. I need fast help too!!!
But you know: these are the best scientists that we've ever had and they are working very hard to help us. And of course I have my own thoughts about the disease (Dr. Chia's work, mold, immune priming like @Hip). But I can't know better than those who do nothing else but search for answers.
Btw I assume that nobody here is educated and experienced as well as them in terms of research, medicine and biochemistry and pharmacology.
So please, don't stop donating.
I forwarded your concerns to OMF and they take it serious.
Just my 2 cents.
Now you can criticise me again if you want.
Martin

Well said

 

[Hopeful1976]

I fear we will be waiting more than another 20 years sadly.
I do not care for 'attacking'. I have just been getting more and more confused as to why such important research as the nano needle has not been funded. It defies any logic to me. And it makes me sad.

 

[Oliver3]

I fear we will be waiting more than another 20 years sadly.
I do not care for 'attacking'. I have just been getting more and more confused as to why such important research as the nano needle has not been funded. It defies any logic to me. And it makes me sad.

It's been explained fella. Let's hang in there. Were all sad. Ron's 80. He doesn't need external pressure. He's not a natural communicator but he is a genius inventor. So let's let them get on

 

[Hopeful1976]

Fella? I'm actually female

 

[Hopeful1976]

And I've opened my mouth, I've spoken of my genuine confusion, that has not be answered, so do not presume nor patronize. And neither have I once questioned the genius that is Ron Davis, who I am truly thankful for. It was the lack of funding for his important work that I questioned.
I am allowed to question, as are others. If I was not confused, or others, then the question would not have been posed.
Let's leave it there.

 

[Oliver3]

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.

I feel you did make it about Ron personally.
One has to be careful what one says online in my opinion.
Of course, you can ask questions.
Janet Dafoe answered.
The only thing I assumed was your gender.. not a big deal

 

[Rufous McKinney]

It's been explained

we did receive a reply from Janet that explained the current delay.

however, that left me with more questions- as I don't understand the details behind the professor leaving to go to UC Irvine. In my mind: I think well, we need to find somebody else since this person has requirements we can't currently meet (funding thru an NIH grant so he can get tenured- I do slightly understand that there is a reality we have to deal with called Professors, Careers, How Science is Done, etc).

We heard NIH did not accept the grant applications for possibly lame reasons.

CAN WE DO ANYTHING MORE about that?

NIH: who in Congress does oversight on them? Who runs the committee? Who else is on it?

Maybe I should write my Congresswoman AGAIN.

And be quite specific: we need this research funded NOW.

I have zero info on WHAT grant applications were not funded. Or WHY weren;'t they- if the reasons are listed, can we see it? Is this public information?

A billion dollars for Zica? I just read: there is no current Zica Virus in the United States. (mybe it was aroud a few years ago briefly).

So we have MILLIIONS disabled citizens with ME, and ZICA gets a billion . They'll just go kill mosquitos and spray poisons for it.

I"m used to being an activist. I would try to do more if I could. Some cage must exist that needs to be rattled.

 

[Abrin]

however, that left me with more questions- as I don't understand the details behind the professor leaving to go to UC Irvine. In my mind: I think well, we need to find somebody else since this person has requirements we can't currently meet (funding thru an NIH grant so he can get tenured- I do slightly understand that there is a reality we have to deal with called Professors, Careers, How Science is Done, etc).

This is my guess from what little I know about the academic world (from previously dating someone who lived in that world).

All the equipment that is needed to run experiments, all the resources needed to run experiments and all the data that has been found in experiments belong to the universities. If you'd like to see an easy example of this in action you just need to look into what happened with Henrietta Lacks.

Also, no professor/researcher in the world is going to be willing to risk their future career in academia and put all their personal resources into going all mad scientist in order to further any experiments for us.

In my opinion, the honest and cruel truth about the matter is that if the Davis family hadn't been personally affected by their son getting sick that the whole XMRV controversy would have derailed ME/CFS research for a lot longer than it did.

Don't get me wrong, I think OMF communication is crap and they are not doing themselves any favors with the way they interact with the greater ME/CFS community.

I also get how the majority of people wouldn't understand why if enough money was thrown at the ME/CFS problem that things just couldn't hurry up and get fixed. But unfortunately, that isn't how 'the Ivory Tower machine' works.

If all it took was good science and money to make things happen for ME/CFS than 'The Lancet' would of retracted the PACE trial years ago and we would have been years ahead of where we are now when it comes to funding.

 

[Oliver3]

This is my guess from what little I know about the academic world (from previously dating someone who lived in that world).

All the equipment that is needed to run experiments, all the resources needed to run experiments and all the data that has been found in experiments belong to the universities. If you'd like to see an easy example of this in action you just need to look into what happened with Henrietta Lacks.

Also, no professor/researcher in the world is going to be willing to risk their future career in academia and put all their personal resources into going all mad scientist in order to further any experiments for us.

In my opinion, the honest and cruel truth about the matter is that if the Davis family hadn't been personally affected by their son getting sick that the whole XMRV controversy would have derailed ME/CFS research for a lot longer than it did.

Don't get me wrong, I think OMF communication is crap and they are not doing themselves any favors with the way they interact with the greater ME/CFS community.

I also get how the majority of people wouldn't understand why if enough money was thrown at the ME/CFS problem that things just couldn't hurry up and get fixed. But unfortunately, that isn't how 'the Ivory Tower machine' works.

If all it took was good science and money to make things happen for ME/CFS than 'The Lancet' would of retracted the PACE trial years ago and we would have been years ahead of where we are now when it comes to funding.

I agree with your post.
I was listening to the fastly becoming infamous podcast with Brett Weinstein and Robert Malone. It seems the whole system if medicine and academia is really messed up. I don't pretend to understand the American system much s I'm British but it seems like the bigger problem lies with the structure of how grants are given, pharma affiliation, and internal bias within the NIH.
Omf could do with a betr communications effort but I'm sure it's pretty diversionary for such a small team.
I'm worried people pile a lot of pressure on an octogenarian who must be heartbroken. We need to protect that guy. As we know, stress is s killer.
Ok we want feedback at where our money's going. I've donated. I'm putting my trust in them because unlike anyone else they have real desire to and reason to be committed.

 

[Rufous McKinney]

you just need to look into what happened with Henrietta Lacks.

Read that book- True Stories You Can Hardly Process- I still pray for Henrietta.

Don't get me wrong, I think OMF communication is crap and they are not doing themselves any favors with the way they interact with the greater ME/CFS community.

What about their Science Director, Dr. Tomkins. He just did an interview with Ben..a couple weeks ago.

Does anyone- interact with him?

 

[Abrin]

I don't pretend to understand the American system much s I'm British but it seems like the bigger problem lies with the structure of how grants are given, pharma affiliation, and internal bias within the NIH.

I am actually Canadian and sadly the academia system of what gets funded for research and what doesn't getting funded for research pretty much works the exact same way as it does in the US. :/

 

[Rufous McKinney]

I was listening to the fastly becoming infamous podcast with Brett Weinstein

I really enjoy discussions with Brett and Heather! Really interesting stuff. I missed the podcast you mentioned/will check that out.

Ok we want feedback at where our money's going. I've donated. I'm putting my trust in them because unlike anyone else they have real desire to and reason to be committed.

I continue to donate monthly- nothing like a paying my Brownie Troop dues.

I'm still willing to rattle cages, but NOT rattle Ron and Janet.

 

[Abrin]

What about their Science Director, Dr. Tomkins. He just did an interview with Ben..a couple weeks ago.
Does anyone- interact with him?

In my opinion, the problem is that they need someone who lives in the world of academia but can easily explain things to those of us who live in the world of the civilian.

There is an equivalent to this in the world of computers who are called 'technical writers' and they make really big bucks because such a person who has a foot in both the world a tech-speak and well as civilian-speak are super hard to find.

 

[Abrin]

I'm still willing to rattle cages, but NOT rattle Ron and Janet.

I don't have a crystal ball but I have this feeling that Long Covid is going to end up rattling a lot of cages for us.

 

[Rufous McKinney]

Long Covid is going to end up rattling a lot of cages for us.

yeah: another reason to do more cage rattling right now.