Fundraising for Dr Lipkin's study.

[MonkeyMan]

I don't mean to minimize the generous contributions of so many people in the 9 months of fund-raising ... and I am truly grateful to every person who has donated.

But let's look at the facts.

• This study is going to be performed by one of the most respected and brilliant researchers in the field, a man who is internationally recognized as an authority on the use of molecular methods for pathogen discovery, and who works at the world’s largest and most advanced center for microbe discovery and diagnosis.
• The results of this study may identify the cause of Chronic Fatigue Syndrome in many patients who are battling this terrible disorder.
• In 9 months (about 275 days), $148,361 has been raised.
• If this pace of fund-raising continues, about $200,000 will have been raised at the 1-year mark.
• The goal of the fund-raising is $1,270,000.
• If this pace of fund-raising continues, it will take over 6 years to reach goal.
• The actual study will take just 1 year.
• Patients and supporters in Norway – with a population sixty times smaller than that of the US – raised $430,000 in 90 days for a clinical trial of Rituximab.
• Then, a slew of US campaigns began crowdfunding and reached or exceeded their targets at astonishing speeds: $213,000 in 31 days for the documentary film Canary in a Coal Mine; $150,000 in 75 days for an Open Medicine Foundation study of Vitamin B12.

I can't help but feel like there is something we're not doing that these other campaigns did. Do we really have to wait 6 years just for Dr Lipkin to get started?? If we put our heads together, maybe we can find a way to get this thing moving. Please, pass this appeal along to others, give (more) if you can, and if you have any ideas or suggestions for how we can do what others (like the Norwegians) did, share them here. Thank you!!

Drew

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[Esther12]

There was another thread on this. imo: Hard to say... raising $1 million is quite a task.

 

[Snow Leopard]

The Rituximab study is a treatment, which naturally is more exciting, and there were a few large donations from wealthy donors. Maria also organised a very visible and effective marketing campaign which made a big difference.

It is very hard to get interest in a speculative study like this one, unless a wealthy donor, or a funding agency decides to make a large contribution.

 

[knackers323]

We need to make this cause known to a rich philanthropic organisation or individual.

I think we also need to be pushing the fact that it will have big ramifications in many health issues, not just cfs and getting other illness groups involved and interested enough to help raise the money.

 

[aimossy]

Just saw this come out today on microbediscovery Facebook, it is a quote message to everyone from Lipkin and Hornig.

"We are deeply appreciative of the continued support of the entire CFS community, we look forward to sharing exciting new findings with all of you in early 2015".

I wonder why it is so slow too. I don't think people are fully appreciating the value of these researchers being involved in the illness and also what microbiome research could do for us. Not exactly sexy stuff and also not much other findings in microbiome yet to capture people imagination with respect to possibility. It is ground breaking research that is all about discovery and is unknown for many.

The other thing is that people see the end total needed, they think, "oh that's too hard, we could never do that" so don't bother donating at all and just sit back and watch.
We won't get very far if we all sit back and watch waiting for some big donor to save the day. Lot's of people need to donate.

Doesn't help that orgs don't get behind the big projects either. At least they could share about these big projects in their magazines ( it is in our best interests after all and also information about what's going on in our community) Some though have shared about the project on Facebook I have noticed but haven't seen or heard about them sharing about it in their magazines yet!

 

[Sean]

I think we also need to be pushing the fact that it will have big ramifications in many health issues, not just cfs and getting other illness groups involved and interested enough to help raise the money.

Good point. The potential pay-off for other diseases is considerable with this study.

 

[Sasha]

It baffles me too. I think this is one of the most important projects we've ever seen for PWME. I've donated every month since the crowdfund started. My family have donated.

$1m is peanuts for a US-based project. Research fundraising is international, of course, but donations to the Norwegian Rituximab trial were overwhelmingly from Norwegians. A country 60 times the size of Norway should be able to fund this kind of thing in five minutes but as someone has said, maybe the issue isn't that it's a treatment trial. However, it could lead to treatment trials very, very quickly and there could be trials of interventions (diets, antibiotics, pro- and prebiotics) that are already available and don't need safety testing. We could be a year away from identifying the cause of our disease and getting mainstream recognition and govt money pouring in, and another year away from viable treatment.

Anyway, donate, spread the word!

And it's not too late for a donor 'angel' to land a shedload of cash on this. The UK Rituximab study got a single donation after several months of fundraising that funded most of the project.

 

[adreno]

As I have said before, it seems Columbia is quite conservative in the way they accept donations, having to fill out forms on their website. Accepting donations through Paypal would mean every website or blog writing about the project could have a donate button. People's donations are often impulsive, direct emotional reactions to something they see or hear. Campaigns that allow SMS donations also seem to do well.

 

[aimossy]

Lipkin also means drugs that aren't antibiotics, probiotics or prebiotics but isn't specifying. Also these probiotics he is meaning are not necessarily ones you might be able to get off the shelves at all. You can tell this also from everything they are seeing in other chronic illnesses with respect to the microbiome.
The research needs done to see the possibilities. For me this is all about the immune system and what is going awol in the immune system, metabolome and microbiome. Also the by products that could be happening from something awol in the microbiome. Could these responsible for symptomology at all? We will only find out by looking into it.
I think there is no doubt things will be found, then they will go for remediation if possible and try and find out what's the drivers could be. You have to go looking for clues before you can piece it all together. They are searching for new clues, and I love that! Looks like they are finding things as well.

 

[adreno]

Lipkin et al. are doing things the right way. They are looking for causes first (which will lead to treatments), rather than arbitrarily trying out different treatments.

 

[Forbin]

With all the associated gut issues seen in ME/cfs, the microbiome study seems like an investigation that has HUGE potential. The microbiome is also a target that has not been deeply studied before. Potentially, it could turn out to be much more than a biomarker. It could turn out to be a major element of causation.

We are very fortunate to have Dr. Lipkin's attention on this issue. I would urge everyone to do what they can in support of this effort.

One other thing. I'm not exactly sure who twice denied Dr. Lipkin funding for his ME/cfs research (was it ME/CFS SEP?), but I consider donating to the microbiome project a cathartic way to fight back against such incompetent nonsense.

 

[aimossy]

@adreno it is really unfortunate that there is no paypal, it sounds like the team worked hard to try and get that but 'conservative' policy like you say had to win out. Such a big formal institution. Text donation was tried for as well, which would have been amazing! Text donation could take off hugely in ME/CFS. I hope big future projects could get these things in place!

 

[Sasha]

One other thing. I'm not exactly sure who twice denied Dr. Lipkin funding for his ME/cfs research (was it CFSAC?), but I consider donating to the microbiome project a cathartic way to fight back against such incompetent nonsense.

It was the NIH (the US govt body that funds medical research). CFSAC is an advisory committee that advises the govt on what to do about ME/CFS and includes many ME/CFS researchers and clinicians. It has repeatedly advised the NIH to spend more money on biomedical research but has been repeatedly ignored.

 

[aimossy]

@Sasha I just highlighted about the possibilities with other drugs and probiotics not on shelves as I wonder that people think 'pffft ive tried antibiotics and probiotics etc and they have not helped'. Like you say this could very well lead to drug trials. Trials of things that we couldn't even think up.

 

[Forbin]

It was the NIH (the US govt body that funds medical research). CFSAC is an advisory committee that advises the govt on what to do about ME/CFS and includes many ME/CFS researchers and clinicians. It has repeatedly advised the NIH to spend more money on biomedical research but has been repeatedly ignored.

Thanks for correcting me on this. I was probably thinking of the ME/CFS Special Emphasis Panel (ME/CFS SEP) at the NIH (as opposed to the CFSAC). At one time, there was a lot of criticism directed at the ME/CFS SEP, as I recall. I'm not sure if this has changed in recent years. I'm also not sure exactly when Dr. Lipkin's proposals were denied.

[Changed my earlier post to correct this.]

 

[Sasha]

@Sasha I just highlighted about the possibilities with other drugs and probiotics not on shelves as I wonder that people think 'pffft ive tried antibiotics and probiotics etc and they have not helped'. Like you say this could very well lead to drug trials. Trials of things that we couldn't even think up.

It could lead to all sorts of stuff, I agree. We don't know what the findings would be. Treatments may well need to be personalised, too - people may well have tried anti/probiotics but without knowing what they're targetting, they might not have used the right ones - there are loads of different ones on the market. And it may call for something that's not currently available, like you say.

How many years have we been begging for research that looks for the cause of our disease? And here's a project that could well find it...

 

[aimossy]

Exactly @Sasha I think that's very true too!

 

[cigana]

I'm afraid it's just the human condition (not meaning to be flippant).

It always saddens me that people with MECFS have the power to solve this disease if they collectively contributed affordable amounts of money.

 

[MonkeyMan]

The Rituximab study is a treatment, which naturally is more exciting, and there were a few large donations from wealthy donors. Maria also organised a very visible and effective marketing campaign which made a big difference.

It is very hard to get interest in a speculative study like this one, unless a wealthy donor, or a funding agency decides to make a large contribution.

Many thanks, Snow Leopard, to you and everyone else who responded to my original post with helpful comments and ideas.

It's becoming painfully obvious that some assistance from wealthy donors is the only way we're really going to get this thing off the ground. Snow Leopard, would you know who the wealthy donors were for the Rituximab study? Perhaps if they were helped to understand the importance and significance of Dr Lipkin's study, they would provide similar assistance here?

Drew

 

[SpecialK82]

I think we are going to have to get deeper pockets involved, to really get things cooking. Need corporations and/or governments for that. This might be crazy, but I wonder if a foreign government would contribute $$ and somehow share in the results/benefits? I realize that Lipkin would get the publishing credit, but we have worked with other countries before, yes? .................maybe Japan.............. Or other countries (or companies) that would have a stake in the results not necessarily for ME/CFS but for other illnesses that it would equally address.

Also I think if we got within range of the goal (a significant portion raised) then patient donations would come on strong at the end.