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

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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.
Then write a letter to OMF with your concerns.
 

Hopeful1976

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Then write a letter to OMF with your concerns.
I did. Nothing. I just honestly and truly dont get it. And what is my little lone voice honestly worth? Nothing at all. I saw that the omf are funding a research tool (PASS) to help drs summarise patients symptoms. I mean!! Surely the nano needle is more important than this!!
My voice is too small. There is nothing I can do. I'm fed up. I will not donate again, tho so many more do and nothing will change.
 
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I did. Nothing. I just honestly and truly dont get it. And what is my little lone voice honestly worth? Nothing at all. I saw that the omf are funding a research tool (PASS) to help drs summarise patients symptoms. I mean!! Surely the nano needle is more important than this!!
My voice is too small. There is nothing I can do. I'm fed up. I will not donate again, tho so many more do and nothing will change.
They do drug screening on living organisms. I personally think that's very promising. But we agree to not agree. And that's ok. It's sad you don't want to donate anymore. But it's your decision.
Best,
Martin
 

Hopeful1976

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I think " big donations" is a bit of a stretch
They get the pittance...we all try our best but they're very underfunded
So you call 'over 30 million dollars' in 9 years (that's around 3 million a year!), plus 30,000 in one month this May a 'pittance'. Hmmm yeh right. I'm so fed up of not speaking the truth. Ron wants to study the nano needle! He knows how much it could help us. Why wont the OMF give one of their million to do it??! It's all suss and I'm exasperated with it all.
 

Oliver3

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So you call 'over 30 million dollars' in 9 years (that's around 3 million a year!), plus 30,000 in one month this May a 'pittance'. Hmmm yeh right. I'm so fed up of not speaking the truth. Ron wants to study the nano needle! He knows how much it could help us. Why wont the OMF give one of their million to do it??! It's all suss and I'm exasperated with it all.
In research terms yes
 

Oliver3

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This is why there needs to be a patient-directed foundation that funds specific research projects.

Donating to a black hole is a waste of money.
Where's your evidence it's a black hole?
Perhaps we could say donations are made to further the general cause.
The problem is, patient directed funding could take us totally in the wrong direction.
I think we have to at least trust the omf for a few more years at least
 

Hopeful1976

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Where's your evidence it's a black hole?
Perhaps we could say donations are made to further the general cause.
The problem is, patient directed funding could take us totally in the wrong direction.
I think we have to at least trust the omf for a few more years at least
I for one have more faith in us patients. And Ron, who tells us with all his honesty, what he wants to happen; yet is totally lacking in funding.
I say again, none of it makes sense.
Patient directed research works for me!
 

Oliver3

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And I go with Ron, except he doesn't appear to get the funding he needs for the nano needle and other research.
And so we go round in circles again.
I'm tired now.
Like I say start up your own research charity. Or recognise that you're out of your depth. We are all frustrated . I think ire should be directed towards politicians
 

MonkeyMan

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I realized a few years ago that the OMF does not really have patients' interests at heart. It is not in their interest to find a solution to ME/CFS. If they did, they would go out of business. The person who runs it makes a nice tidy salary and doesn't want to lose that. They are notoriously poor about communicating with the community. All they do is ask for money. Ron is a brilliant and dedicated researcher and he deserves the support of an organization that is truly motivated to end our suffering. The OMF is not that organization.
 

Oliver3

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I realized a few years ago that the OMF does not really have patients' interests at heart. It is not in their interest to find a solution to ME/CFS. If they did, they would go out of business. The person who runs it makes a nice tidy salary and doesn't want to lose that. They are notoriously poor about communicating with the community. All they do is ask for money. Ron is a brilliant and dedicated researcher and he deserves the support of an organization that is truly motivated to end our suffering. The OMF is not that organization.
Absolute nonsense.
Such ridiculous attacks.
This disease is unbelievably difficult to work out. That's all there is to this. Dark heart projections are unwarranted
 
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It is not in their interest to find a solution to ME/CFS. If they did, they would go out of business.
I think this is a pretty unfair charactization, I hope we are not this jaded. Five research faciliities are being run out of several countries and Dr. Davis is only one aspect of the whole picture.

I wish there was a very clear WISH LIST so we could help manifest or better help address needs to further these research efforts.

I do agree that improved communications would benefit all of us.
 

5vforest

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I have my qualms with them but I think that maybe pessimism is clouding your reasoning.

I believe most of the run around we get from OMF is due to them being in the position of having to provide hope for patients, many of whom are at risk of suicide due to this illness.

When I look at it from this perspective (especially w/r/t communications from the Dafoe/Davis family), it makes a lot more sense to me, and I don't have any ill will about it.

That said, everyone is entitled to their opinion.

I have seen the 990s and I agree that the salaries are high enough where it makes me feel weird, especially given that they are fundraising from broke patients.
 

aquariusgirl

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I don't know what people are talking about when they say "the run around we get from OMF."

It seems pretty clear to me that Ron, Janet & Ashley are making huge outreach efforts to keep us updated.

And it is appreciated.

Also, I'm amazed Rob Phair is still donating his time !

I wonder if the people complaining on here have taken the time to petition their congressional reps or NIH for more funds for CFS research?

Hopeful said they have more faith in patients to get things done> Am I missing something? They had 40 years to get something done... and as far as I can see....they/we got sweet FA done.... This is magical thinking....
 
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I wonder if the people complaining on here have taken the time to petition their congressional reps or NIH for more funds for CFS research?
I entirely agree that there are avenues to keep putting pressure on Key Parties to stay on raising up our issue.

I wrote my Congresswoman- on paper, with a stamp and envelope: got an entire written response back, and YES she is engaged in our issue.

Its really important to do that and : I should do it again. Keep at it. Keep strategizing.

There is alot of federal $$$ right now in the U.S. for the long haul research etc. We should feel a bit more upbeat, all things considered.
 

junkcrap50

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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:
1623971857223.png

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.
 

Oliver3

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I don't know what people are talking about when they say "the run around we get from OMF."

It seems pretty clear to me that Ron, Janet & Ashley are making huge outreach efforts to keep us updated.

And it is appreciated.

Also, I'm amazed Rob Phair is still donating his time !

I wonder if the people complaining on here have taken the time to petition their congressional reps or NIH for more funds for CFS research?

Hopeful said they have more faith in patients to get things done> Am I missing something? They had 40 years to get something done... and as far as I can see....they/we got sweet FA done.... This is magical thinking....
Really well said. Ron has transformed the field. The suggestion that he's being stymied from saving his son's life is an adhominem and frankly slanderous attack on a tiny foundation.
The massive systemic abuse we are subject to needs to be addressed not a tiny bunch of freedom fighters( i love star wars ok?) Trying to work wonders on s shoe string.
Btw in the UK. I think m.e. research gets 3 million a year. Nothing goes to research.
Redirect your ire onto the real gangsters here. It's certainly not anyone at omf