Open Medicine Foundation Receives Monster Donation For ME/CFS

[Cort]

Patient Community Comes Through

Just a couple of months ago, Davis was so concerned that the OMF's inability to secure funding for an NIH research center grant would impact donations that he publicly shared some of the head-shaking comments by the reviewers.

Boy was he wrong. On Giving Tuesday the OMF hoped for $150K and got $450K. They parlayed that and other donations to fund a $1.2 million Collaborative Research Center Ron Davis has built at Stanford. Financially that put them on par with the three NIH funded ME/CFS research centers for at least this year.

That money is going to fund Mark Davis's enticing T-cell work, Mike Snyder's huge genetics, genomic and immune family study and Ron Davis's nano-needle and other work.

Pineapple Fund Steps In Again

[fright]

[/fright]Then a couple of weeks ago came a $1 million grant from the Pineapple Fund. Yesterday, impressed and probably shocked by the outpouring of thanks from the ME/CFS community - plus strong support from the research community - Pine just added in another $4 million to the $1 million donation.

Get this - with all the many worthy projects the Pineapple Fund is supporting - the sub Saharan water project, the healthcare for everyone project, the fighting aging project - Pine has chosen to give the OMF one of his biggest donations

Pine's clearly got it about ME/CFS. He/she knows the disease affects a lot of people, is very serious, and yet gets very little resources. Pine was looking to make a difference in people's lives - and ME/CFS is a great place to do that. If any disease is due for a big jump in support it's ME/CFS.

“I had known about ME/CFS for a while, and I know it is a serious condition without much in the way of treatment or research. I've recently received letters of support from esteemed academics in the field strongly supporting OMF, and that helped me make the decision!"

From the Open Medicine Foundation announcement:

“Thank you, Pineapple Fund, for seeing beyond the cloak of invisibility laid upon this horrid illness and recognizing the desperate need. The hope this provides is palpable.” Liane B.

A Harbinger of the Future?

The huge Pineapple Fund donation is hopefully a harbinger of the future. It suggests - as we know - that when people really get it about ME/CFS they're often moved to support it.

Our story is our greatest asset which is why sharing it is so critical. It's a horrible story - millions of ill people ignored by the NIH and doctors for decades - but it's also a moving one. Davis's sharing it again and again at Stanford has elicited strong support there. It recently elicited strong support and interest at the University of Texas. The shares from the patients surely helped Pine support the research so generously. For people who really want to make a difference ME/CFS is a natural.

From the Open Medicine Foundation Announcement:

“Thank you for giving hope to people suffering with this disease. My son has had it for about 10 years, most of that time it was not recognized as an illness, let alone a serious one. A life full of exhaustion and pain may come to an end soon for him and other sufferers.” Ann W.

A New Problem

Now Ron Davis has a new problem. How to best spend all that money. The donation will quadruple the resources of the collaborative Research Institute and allow him to greatly accelerate his efforts. He'll be able to hire researchers for multi-year stints - something he's wanted to do for years.

[fright]

[/fright]All the work at Davis's research center is exciting. I'm particularly intrigued to see if Davis can use the nano-needle to bring clarity to the energy problems in ME/CFS, uncover possible factors in the serum that are playing a role, develop a diagnostic test and test treatments. The Mark Davis T-cell study could determine what's tweaking the immune system of ME/CFS patients. Then there's the SJSU blood vessel study and the big Mike Snyder family study. Plus we're waiting on the results of the severe patient study.

That's a lot of work and a tremendous amount of movement for the Open Medicine Foundation in just five years. That movement is all the more remarkable given that neither Ron Davis nor Linda Tanenbaum had done anything like this before. Their creative approach to ME/CFS has been inspiring.

We shouldn't expect that the $5 million is going to bring us the answer to ME/CFS - major diseases get hundreds of millions of dollars a year - but it's going to jump start Ron Davis's work - and who knows where that will lead...

2018 is starting off well

 

[Cecelia]

I am thrilled!

On another note, what is the SJSU blood vessel study you referred to?

 

[Cort]

Ohhh - you missed that

Interesting stuff! It was in this post

https://www.healthrising.org/blog/2017/12/21/urgency-ron-davis-chronic-fatigue-research-center/

and here it is...

The Weird Blood Project

I asked Davis about the next year – I said he’d be focusing on the big three projects, right when Janet cut in – Ron is always investigating; you never know what might turn up. “The Weird Blood Project” (my name for it) is a perfect example of that.
The idea that red blood cells issues might be causing problems is not new. The red blood cells, after all, deliver oxygen to the mitochondria in our cells. If something has gone wrong with them, then energy production would drop.
Could unusually formed red blood cells be having trouble getting to the tissues?

In 1993, Simpson found alterations in red blood cell shape after exercise which he thought could result in reduced oxygen transfer to the tissues. In 1999, David Berg proposed that low level increases in coagulationwere rampant in ME/CFS. (At an LDN conference, Dr. Holtorf stated that he finds heparin to be quite effective at times.) In a small (n=20) 2010 study, though, Brenu found no changes in red blood cell aggregation or deformability or fibrinogen levels between ME/CFS patients and healthy controls.

Recently, Anand Ramasubramanian, Ph.D., a bioengineering specialist from San Jose State University (my alma mater has with Davis begun taking another look at the red blood cells in ME/CFS. Ramasubramanian, who is a blood flow expert and inventor, learned about Davis’s ME/CFS studies from one of his team members. Both groups were interested in the biomechanics of cells, making their collaboration a natural fit. Dr. Amit Saha is leading the effort at SJSU.

Saha is looking at the rate at which the red blood cells from Ron Davis’s patient population flow from a larger test tube to a smaller one; i.e. from a blood vessel to a capillary. The results are still quite preliminary, but thus far he’s finding significant reductions in how quickly the ME/CFS patients’ red blood cells flow into the smaller tube. Ramasubramanian said the early results “are intriguing to say the least”.Why ME/CFS patients’ red blood cells are getting bunched up in the capillary tube isn’t clear. They could be too stiff and are having trouble deforming. They could be an odd shape, or something else may be going on.

Ramasubramanian said they were starting to do microscopy on the blood vessel to see if they were structurally different in some way. He expected to have answers in a couple of months and to be writing a research grant proposal to study the issue in more depth.

 

[Cort]

Here is the text from the OMF announcement:

PINEAPPLE FUND INCREASES DONATION TO $5 MILLION

Two weeks ago, on January 14, 2018, OMF received a $1 million donation from the Pineapple Fund to “accelerate much-needed research for ME/CFS and related chronic complex diseases."

The Pineapple Fund was so moved by the outpouring of appreciation from our US and international OMF family, that today they have increased their commitment with an additional $4 million donation through bitcoin to bring theirtotal support to $5 million! Linda Tannenbaum, OMF CEO/President, believes the additional donation was made in response to the overwhelming gratitude expressed by the patient community on Reddit and other social media.

OMF has received thousands of likes and comments on Facebook, Twitter and Reddit. Patients and family members have been moved to tears by this exciting news. Here are two examples of the heartfelt gratitude:

“Thank you for giving hope to people suffering with this disease. My son has had it for about 10 years, most of that time it was not recognized as an illness, let alone a serious one. A life full of exhaustion and pain may come to an end soon for him and other sufferers.” Ann W.

“Thank you, Pineapple Fund, for seeing beyond the cloak of invisibility laid upon this horrid illness and recognizing the desperate need. The hope this provides is palpable.” Liane B.

To each and every person who expressed their appreciation, we thank you! Your actions and positive reactions have truly helped advance research.

This additional funding will drive research already underway in several key areas: creating a diagnostic test for ME/CFS; scaling up patient data analysis; accelerating the development of new technology to identify treatment options; and ultimately, research towards a cure.

Expressing support for the work of OMF, “Pine” from the Pineapple Fund said in a recent message: “I had known about ME/CFS for a while, and I know it is a serious condition without much in the way of treatment or research. I've recently received letters of support from esteemed academics in the field strongly supporting OMF, and that helped me make the decision!"

We are tremendously grateful to the Pineapple Fund for igniting OMF's research and delivering hope!

 

[Robert 1973]

Great news.

Just one query: you refer to the benefactor as male. Is that a known fact?

 

[Cort]

Great news.

Just one query: you refer to the benefactor as male. Is that a known fact?

Ha...Well that's an interesting question. It sounded like a male name to me but I don't know that we know...In fact I can't find out. It could very well be a woman...I amended the post to make it gender neutral.

Will Pine ever share their real identity? That’s unlikely. “I prefer keeping my identity a mystery. The Pineapple Project isn’t about publicity. In fact, zero people in my life know that I'm behind it. It’s better for people to think you are well off than super rich.
“But I can share my love for pineapple,” they added. “I once ate so much pineapple that I suffered an allergic reaction and had to go to urgent care! Don’t do that.”

Here's another interesting fact about "Pine" - he/she came up the idea during a ketamine infusion!

Currently, I’m really excited about MAPS! Many people in the world, me included, unfortunately suffer from mental illness. There are various extremely promising treatments that are being researched, like MDMA for PTSD and ketamine for depression; with better longevity and less side effects than existing pharmaceuticals.

I was prescribed ketamine off-label to treat a lesser known condition. I had immediate, substantial, and long lasting improvements, with zero side effects. In fact, I came up with the idea for the Pineapple Fund during a ketamine IV, as I started re-gaining motivation to make an impact on the world.

 

[susan murphy]

Patient Community Comes Through
Do you know if some of this money is going toward metabolomic research? It seems Dr. Naviaux’s metabolomic research showed great potential and might need money to continue.

Just a couple of months ago, Davis was so concerned that the OMF's inability to secure funding for an NIH research center grant would impact donations that he publicly shared some of the head-shaking comments by the reviewers.

Boy was he wrong. On Giving Tuesday the OMF hoped for $150K and got $450K. They parleyed that and other donations to fund a $1.2 million Collaborative Research Center Ron Davis has built at Stanford. Financially that put them on par with the three NIH funded ME/CFS research centers for at least this year.

That money is going to fund Mark Davis's enticing T-cell work, Mike Snyder's huge genetics, genomic and immune family study and Ron Davis's nano-needle and other work.

Pineapple Fund Steps In Again

[fright] View attachment 2802 [/fright]Then a couple of weeks ago came a $1 million grant from the Pineapple Fund. Yesterday, impressed and probably shocked by the outpouring of thanks from the ME/CFS community - plus strong support from the research community - Pine just added in another $4 million to the $1 million donation.

Get this - with all the many worthy projects the Pineapple Fund is supporting - the sub Saharan water project, the healthcare for everyone project, the fighting aging project - Pine has chosen to give the OMF one of his biggest donations

Pine's clearly got it about ME/CFS. He'she knows the disease affects a lot of people, is very serious, and yet gets very little resources. Pine was looking to make a difference in people's lives - and ME/CFS is a great place to do that. If any disease is due for a big jump in support it's ME/CFS.



From the Open Medicine Foundation announcement:



A Harbinger of the Future?

The huge Pineapple Fund donation is hopefully a harbinger of the future. It suggests - as we know - that when people really get it about ME/CFS they're often moved to support it.

Our story is our greatest asset which is why sharing it is so critical. It's a horrible story - millions of ill people ignored by the NIH and doctors for decades - but it's also a moving one. Davis's sharing it again and again at Stanford has elicited strong support there. It recently elicited strong support and interest at the University of Texas. The shares from the patients surely helped Pine support the research so generously. For people who really want to make a difference ME/CFS is a natural.

From the Open Medicine Foundation Announcement:



A New Problem

Now Ron Davis has a new problem. How to best spend all that money. The donation will quadruple the resources of the collaborative Research Institute and allow him to greatly accelerate his efforts. He'll be able to hire researchers for multi-year stints - something he's wanted to do for years.

[fright]View attachment 2803 [/fright]All the work at Davis's research center is exciting. I'm particularly intrigued to see if Davis can use the nano-needle to bring clarity to the energy problems in ME/CFS, uncover possible factors in the serum that are playing a role, develop a diagnostic test and test treatments. The Mark Davis T-cell study could determine what's tweaking the immune system of ME/CFS patients. Then there's the SJSU blood vessel study and the big Mike Synder family study. Plus we're waiting on the results of the severe patient study.

That's a lot of work and a tremendous amount of movement for the Open Medicine Foundation in just five years. That movement is all the more remarkable given that neither Ron Davis nor Linda Tanenbaum had done anything like this before. Their creative approach to ME/CFS has been inspiring.

We shouldn't expect that the $5 million is going to bring us the answer to ME/CFS - major diseases get hundreds of millions of dollars a year - but it's going to jump start Ron Davis's work - and who knows where that will lead...

2018 is starting off well

Ha...Well that's an interesting question. It sounded like a male name to me but I don't know that we know...In fact I can't find out. It could very well be a woman...I amended the post to make it gender neutral.



Here's another interesting fact about "Pine" - he/she came up the idea during a ketamine infusion!

Patient Community Comes Through

Just a couple of months ago, Davis was so concerned that the OMF's inability to secure funding for an NIH research center grant would impact donations that he publicly shared some of the head-shaking comments by the reviewers.

Boy was he wrong. On Giving Tuesday the OMF hoped for $150K and got $450K. They parleyed that and other donations to fund a $1.2 million Collaborative Research Center Ron Davis has built at Stanford. Financially that put them on par with the three NIH funded ME/CFS research centers for at least this year.

That money is going to fund Mark Davis's enticing T-cell work, Mike Snyder's huge genetics, genomic and immune family study and Ron Davis's nano-needle and other work.

Pineapple Fund Steps In Again

[fright] View attachment 2802 [/fright]Then a couple of weeks ago came a $1 million grant from the Pineapple Fund. Yesterday, impressed and probably shocked by the outpouring of thanks from the ME/CFS community - plus strong support from the research community - Pine just added in another $4 million to the $1 million donation.

Get this - with all the many worthy projects the Pineapple Fund is supporting - the sub Saharan water project, the healthcare for everyone project, the fighting aging project - Pine has chosen to give the OMF one of his biggest donations

Pine's clearly got it about ME/CFS. He'she knows the disease affects a lot of people, is very serious, and yet gets very little resources. Pine was looking to make a difference in people's lives - and ME/CFS is a great place to do that. If any disease is due for a big jump in support it's ME/CFS.



From the Open Medicine Foundation announcement:



A Harbinger of the Future?

The huge Pineapple Fund donation is hopefully a harbinger of the future. It suggests - as we know - that when people really get it about ME/CFS they're often moved to support it.

Our story is our greatest asset which is why sharing it is so critical. It's a horrible story - millions of ill people ignored by the NIH and doctors for decades - but it's also a moving one. Davis's sharing it again and again at Stanford has elicited strong support there. It recently elicited strong support and interest at the University of Texas. The shares from the patients surely helped Pine support the research so generously. For people who really want to make a difference ME/CFS is a natural.

From the Open Medicine Foundation Announcement:



A New Problem

Now Ron Davis has a new problem. How to best spend all that money. The donation will quadruple the resources of the collaborative Research Institute and allow him to greatly accelerate his efforts. He'll be able to hire researchers for multi-year stints - something he's wanted to do for years.

[fright]View attachment 2803 [/fright]All the work at Davis's research center is exciting. I'm particularly intrigued to see if Davis can use the nano-needle to bring clarity to the energy problems in ME/CFS, uncover possible factors in the serum that are playing a role, develop a diagnostic test and test treatments. The Mark Davis T-cell study could determine what's tweaking the immune system of ME/CFS patients. Then there's the SJSU blood vessel study and the big Mike Synder family study. Plus we're waiting on the results of the severe patient study.

That's a lot of work and a tremendous amount of movement for the Open Medicine Foundation in just five years. That movement is all the more remarkable given that neither Ron Davis nor Linda Tanenbaum had done anything like this before. Their creative approach to ME/CFS has been inspiring.

We shouldn't expect that the $5 million is going to bring us the answer to ME/CFS - major diseases get hundreds of millions of dollars a year - but it's going to jump start Ron Davis's work - and who knows where that will lead...

2018 is starting off well

Ha...Well that's an interesting question. It sounded like a male name to me but I don't know that we know...In fact I can't find out. It could very well be a woman...I amended the post to make it gender neutral.



Here's another interesting fact about "Pine" - he/she came up the idea during a ketamine infusion!

Do you know if any of this money is going toward metabolomic research? It seems Dr. Naviaux’s metabolomic research showed great potential and he might need money to continue the research.

 

[Cort]

I actually forgot about Dr. Naviaux. I would be shocked if it didn't. Whitney's metabolomic results were the first time Ron ever saw something substantial enough that might explain what was going on. I know Naviaux wants to do a clinical trial with Suramin (sic) in ME/CFS this year. We shall see but I would be surprised if some of the money didn't go to fund that.

Do you know if any of this money is going toward metabolomic research? It seems Dr. Naviaux’s metabolomic research showed great potential and he might need money to continue the research.

 

[Forebearance]

Oh my God!!!!

 

[Jiki Bertsch-Betts]

Yahoo!

 

[keepinghopealive]

Patient Community Comes Through
We shouldn't expect that the $5 million is going to bring us the answer to ME/CFS - major diseases get hundreds of millions of dollars a year - but it's going to jump start Ron Davis's work - and who knows where that will lead...

This raises an interesting question: is there any reason to believe that solving CFS is going to be easier than solving the major diseases that get hundreds of millions of dollars? For example, is cancer, which gets infinitely more attention and funding, a more complex problem? I don't know the answer but would love to hear others' thoughts.

Anyhow, this Pine fellow/gal is an angel, a saint. Miracles do happen.

 

[Beth from Oz]

This is such wonderful news! I cried when I read it. I want to say thank you to Pine (but I have no idea where or how) from the bottom of my heart.

 

[Audrey Brimson]

Fantastic news, maybe I am biased, if verbatim Pine sounds female! Thank you, thank you. Re the Weird Blood, in the late 1980's an Adelaide, Australian researcher, Dr Muckajee, ? spelling, found that during a reaction (crash) the RBCs became mis-shapen, swollen, inelastic and unable to travel through small capilliaries to deliver oxygen, he likened this to a similar reaction found in Marathon runners. The difference being the marathon runners reverted to normal in 4 hours but the people suffering the abnormal reaction took about 5 days. Are the researchers able, or do they do the testing during a bad crash??

 

[keepinghopealive]

This is such wonderful news! I cried when I read it. I want to say thank you to Pine (but I have no idea where or how) from the bottom of my heart.

Pine's email address is easily found by using Google. I would print it here if I was sure he/she wouldn't mind.

 

[Neunistiva]

This raises an interesting question: is there any reason to believe that solving CFS is going to be easier than solving the major diseases that get hundreds of millions of dollars? For example, is cancer, which gets infinitely more attention and funding, a more complex problem? I don't know the answer but would love to hear others' thoughts.

I was thinking about this as well.

I think ME/CFS is a complex illness, but unlike AIDS or cancer, maybe it's just our bodies being out of whack and all they need is a little push in the right direction to snap themselves out of this. Hopefully with an already-FDA-approved drug. But now I'm just daydreaming.

I think we're lucky that we have Dr. Davis whose singular focus is finding cure ASAP. Most other researchers have to consider how research direction they pick will impact their career, even if they're in it just to help and not for selfish reasons at all.

Truth be told, we won't know how complex the problem was until it's solved

 

[RobertD]

Posted by me - so glad it came to something, even if it was nothing to do with me.

https://www.healthrising.org/forums/threads/bitcoin-charity-giveaway.5768/#post-33093

 

[Remy]

This is such wonderful news! I cried when I read it. I want to say thank you to Pine (but I have no idea where or how) from the bottom of my heart.

You can leave a message on this Reddit thread: https://www.reddit.com/r/cfs/comments/7uqoep/the_pineapplefund_has_donated_a_further_4m_to_the/

 

[dejurgen]

Thank you Pine, out of the bottom of my hart, whoever you are. You created a smile on my face today and hope for the future.

As to the OMF and Ron Davis, they'll have no problem spending this money very well. They don't lack good ideas. Even if they lack hands now, they could reserve some for the longer run. Attracting young and promising researchers is a must for every strong research group. The lead researcher can't do all by himself .

Attracting the best young talents ain't easy if all you can offer them is a one year project that may or may not be followed by another. Can't move for that, can't build a career on that. And the research group can't buy a multi-million dollar tool if it doesn't know that it will be able to use it for more then half a year.

Within 5 to 10 years, many of these now upcoming talents will found their very own ME/FM research group at a university where their wasn't any yet. Multiplying the field and resources.

It sounds long, but like with cancer, HIV or MS improvements in patient outlook and quality of life happened along the way. That counts too ! And for sure, the sooner good researcher can hit the road, the sooner they'll reach their destination.

 

[Cort]

This raises an interesting question: is there any reason to believe that solving CFS is going to be easier than solving the major diseases that get hundreds of millions of dollars? For example, is cancer, which gets infinitely more attention and funding, a more complex problem? I don't know the answer but would love to hear others' thoughts.

Anyhow, this Pine fellow/gal is an angel, a saint. Miracles do happen.

I think it will be easier and the reason is that they haven't found evidence of organ or other physical damage. I think it could be a signalling problem that might be easier than we think to reverse.

 

[Cort]

You can leave a message on this Reddit thread: https://www.reddit.com/r/cfs/comments/7uqoep/the_pineapplefund_has_donated_a_further_4m_to_the/

Thanks Remy. I was wondering where to do this...