Outsourcing the "Something in the Blood?"

[sebaaa]

Urgency is severely lacking. Don't forget Ron Davis' 5 funding applications all got refused last week. He's trying to get money from every angle but it isn't working. We should all start a lottery syndicate so we can give 90% of the pot to OMF or like researchers. I do wish there was a way to fundraise more money for people like Prusty and OMF though, if there was a way we would start getting somewhere I think.

I don't think more fundraising would do much. OMF already have 90% of the "pot" a.k.a millions of dollars in donations. Prusty could potentially benefit from it even though he just had a fundraiser that raised 30k to find exactly what this thread is about. This is why I think it's even more important to outsource the "factor" to find it as fast as possible, and begin testing treatments.

 

[godlovesatrier]

How do we know they have millions? Why would Ron be pursing funding if they already had the money they needed?

I trust Ron to do the job anyway, I am sure there's a very good reason why he's either not said anything yet, or is not moving as quick as he wants, or is doing that and we just need to wait for the next update.

 

[sebaaa]

They've received over $20 million over the years. For example, in 2018 they received $5 million from the Pineapple fund, and a further $1 million from an anonymous donor. What happened to that money? How is it possible for that money to vanish with barely anything in return? Maybe they don't have the money right now but it just begs the question of what's happening with all of the money that they get from the community?

I trust Ron too... But I think that with the way things are going right now, everything is just way too slow and it's not a good thing for patients that want a cure right now.

 

[godlovesatrier]

Well if I put my hat on considering all the industries I've worked in. It could just be purely political, power dynamics and associated agreements not to mention promises. The money may end up going to many places seperately to cover many areas. Still I am glad I know this now! So thanks for the info @sebaaa

 

[Wishful]

For me, the lack of visible progress, or even reporting on what's been done and what's being worked on, has made me less likely to donate again. For all I know, the funds are now going to more fundraising activities, to raise more funds for more fundraising. I'd like to hear more science, even if it's negative results.

 

[Uknmy]

We really need to start a foundation ourselves and raise money and direct where the funding goes.

 

[IThinkImTurningJapanese]

It's not like HIV/AIDS or cancer where the patient will die so you MUST find a cure as fast as possible.

But it is. Who the fuck can tolerate living like this?

 

[raghav]

They've received over $20 million over the years. For example, in 2018 they received $5 million from the Pineapple fund, and a further $1 million from an anonymous donor. What happened to that money? How is it possible for that money to vanish with barely anything in return? Maybe they don't have the money right now but it just begs the question of what's happening with all of the money that they get from the community?

I trust Ron too... But I think that with the way things are going right now, everything is just way too slow and it's not a good thing for patients that want a cure right now.

The title of www.omf.ngo page is
OVER $24 MILLION RAISED SINCE 2012

The problem is people think ME/CFS means OMF and they donate to them. OMF is like a big black hole at the center of me/cfs galaxy. They are taking away all there is from mostly patients and their relatives except for the pineapple fund (maybe they too have somebody with ME) and what have we got in return - NOTHING. So is it not time we thought deeply as to what is happening and should we change course as a community. Nobody else gives a damn about this disease except us patients and their near and dear ones. So it is time we pick and choose whom to fund and what to fund and giving strict rules as to sticking to deadlines. There is no data publicly given out by OMF on the experiments they have carried out till now. How will the researchers not part of OMF have access to it. Let OMF at least give out all the technical data of their research till now and let us decide whether to fund them or not. Then it is left to the individual donor to decide. There are a lot of cheerleaders of OMF here and I will get a lot of brickbats from them. That is ok. Look at SolveMECFS they pick and choose researchers and give them what 100k and they have been delivering results. It is up to the individual donor to decide which one of these two to donate to.

 

[kewia]

But it is. Who the fuck can tolerate living like this?

Not even that, you can't get the years back lived with this disease.

 

[IThinkImTurningJapanese]

Not even that, you can't get the years back lived with this disease.

I think I've found a way.

 

[kewia]

I think I've found a way.

?

 

[Rufous McKinney]

give them what 100k and they have been delivering results.

can you be more specific about which results your referring to?

Solve ME has been busy lately doing some lobbying which I support....we also need that.

 

[IThinkImTurningJapanese]

?

I've been discussing some of it in this thread.

Like many who are taking Truvada, antivirals and antiretrovirals have restored my ability to stand up. After that how does one overcome decades of deconditioning? And simply aging.

Several researchers, and doctors, have been studying this for decades. I take NMN, practice intermittent fasting, and can now exercise. I'm watching myself have a chance at renewed life. It's weird.