Dr Ian Lipkin's $1.27m gut microbiome study - crowdfunding campaign - news and updates

[Esther12]

It's not going that slowly... it's more that it's a demanding target imo! That could also mean that some people delay donating until it's closer to the target.

It's good that Lipkin's so committed to doing thorough research, but over a million dollars is a big ask.

 

[geraldt52]

It's not going that slowly... it's more that it's a demanding target imo! That could also mean that some people delay donating until it's closer to the target.
It's good that Lipkin's so committed to doing thorough research, but over a million dollars is a big ask.

I do understand what you're saying, Esther12, and I don't disagree with your analysis.

I guess I can't help but compare the progress so far with that of the recent campaigns for the documentaries, the Rituximab trial, and the Open Medicine Foundation B12 study.

With the documentaries in particular I was just astonished at how quickly the money was raised, and the level of enthusiasm. There have been CFS documentaries before, and I personally remain a bit skeptical how much another one will help, even though I applaud the effort and wish them great success. What there's never been before is a researcher with the stature and resources of Dr. Lipkin taking a genuine interest in our plight...virtually pledging to stick with it until he figures it out. I just had it in my mind that it would be a lot easier to raise at least a big chunk of the money, that there would be a flood of donations right from the beginning. I'm still a bit surprised.

Your point about the possibility of people delaying contributing until we're closer to target is a very good one. I would encourage anyone thinking that way to instead consider making a number of smaller donations, starting right away...in the hopes that others will be swayed by the "momentum". Dr. Lipkin has pledged to use whatever is raised to begin the process, so we shouldn't get too focused on $1.27M and be discouraged by the size of the number.

 

[Sasha]

Invest in ME got to around £60,000 ($90,000) in many small donations, I think, and then a single donor stepped in with a whopping £200,000 ($300,000).

Not only are small donations worthwhile in themselves - there are many, many PWME and our donations add up - but a fund that's constantly moving upwards is one with a chance to attract large donors.

Let's keep giving! Like you say, Gerald, scientists like Lipkin don't come our way every five minutes. His arrival on the scene is one of the best pieces of news I've had in nearly 30 years of illness.

 

[geraldt52]

There's a new thread over in "General ME/CFS News" discussing this short segment involving CFS on Oprah.com:
http://www.oprah.com/health/do-you-have-an-autoimmune-disease-mystery-illness

This seems like an opportunity to capitalize on Oprah's media power. There have been several comments to the article already and suggestions that people try to contact Oprah.

I'm thinking that this might be a case where a communication from "The Microbiome Discovery Project" or " The Columbia Center for Infection and Immunity" might have a much better chance of catching the attention of someone at Oprah.com than a flood of individual emails. Something in an "official" capacity, especially coming from, or endorsed by, a known institution like Columbia University seems more likely to make it to Oprah's desk than comments from random names off the internet.

Oprah is nothing if not media-savvy. It seems to me that a story about how the world's most famous virus hunter was denied funding for CFS, and is resorting to crowd-funding, makes a compelling headline Oprah might be interested in. Who knows, maybe Oprah might even make a contribution, or issue a "matching challenge", if someone can get her attention. We desperately need people in powerful places, and Oprah is an influential woman who knows how to use the media.

I'm not adverse to a bunch of emails and comments to Oprah.com, but I'm thinking an "official" effort might get better a better result.

Thoughts?

BTW, I wrote this in the spirit of sharing and kicking around ideas. I don't want to seem like I'm armchair quarterbacking all the fantastic work that the team is doing. I'm certainly not offended if other people have other ideas...the more ideas the better. Also, this might not be the right thread for this discussion...it seems like there was another one, but I couldn't find it.

 

[Sasha]

Sounds like a great idea, @geraldt52.

I've never heard of 'armchair quarterbacking'! We have 'backseat driving' in the UK - maybe it's similar. But I don't think you're doing either!

 

[shahida]

In the spirit of kicking round ideas I think I've got one although I think it's probably been thought of before. It's obvious that governments around the world are hostile to me- also we're going to have to fund most of it ourselves-if the renowned Dr Lipkin cant get funding then who else can? We surely need to utilise the power of the many ME contacts out there- would it be possible in each country to develop a regular email contact with people to raise , say £1 or $1 a month. So say in the UK there're 50? ME support groups who are in contact with 1000 people nationwide? Of these maybe 700 could donate that's £700 a month . This replicated across the world -maybe 10 countries? \I reckon we could raise a few hundred thousand pounds/year-it's not enough not but it's something. I know that the PR site does a great deal but hardly anyone I know looks at it so there's a wider network.
I suppose there'd be the issue of which organisation would collect this money- maybe as a particular ring fenced programme and there'd be a commitment to spending the money worldwide and not just on their own research. Maybe this organisation could be based in the US?

I know that PR have an email list for the Lipkin study but maybe this could be extended for future research projects and be a more sustained campaign? Maybe we could call it the ME Patients Global Network or something.

I'd like to know what others think

 

[Aileen]

@shahida There is a fundraising committee on Facebook. I'm a member but not active right now as i"m too sick and overwhelmed. But, we have trouble just getting people to spend a minute or two to go to a website and click a couple times in order to win $25,000 , even $100,000 for our causes. These are online contests in which money is just being given away. You just have to vote.

But most won't. I don't understand why. Some national ME organizations will not even promote the contests, even the big money ones, even when begged to do so. The patients, all very ill themselves, on the fundraising group half kill themselves. In some of the contests I was involved in promoting, we were pushing ourselves so hard someone was crashing every couple days.

With the numbers we have, we should be winning many more of these contests. But WE will not put forth the effort. The big question is why???

 

[acer2000]

Wow I didn't know it was that bad? There are 1 million people in the USA alone who have ME. If everyone gave $1 we'd be set (OK $1.27, but still). I think we need to do a better job of getting the word out, but I didn't know there was so much resistance among ME organizations regarding fundraising pushes. Why is that? If we don't advocate for ourselves, who will?

I do think that it can be slow going sometimes in the beginning and then larger donations/more donations can show up once the goal seems inevitable. Also, for the doc film, they used kickstarter which is an extremely well known site that has a lot of built in virality/credibility to it. They have a directory/suggestion engine, etc for their memebers. Unfortunately they don't do science funding, they are focused on creative projects. They also take a commission.

 

[Aileen]

The contests I was referring to do not involve people donating. They are put on by companies that are donating a set amount of money to charity. Rules vary, but basically they take nominations for the organizations or charitable causes to be included. Then people vote. The causes receiving the most votes win the money. This way, the company combines charitable giving and marketing. It's like pulling teeth to get most people to participate.

 

[Sasha]

Just came across this article, which is interesting for showing how the idea that bacteria can help is is becoming important in all sorts of areas, in this case, the skin microbiome:

http://www.nytimes.com/2014/05/25/m...oo-bacteria-rich-hygiene-experiment.html?_r=1

 

[shahida]

I agree most people just don't know about these initiatives-I know many in my local support group who use facebook but it's so much effort to go out there and look for things-like so much related to ME things are so fragmentary. That's why I think a network of accessing people via their personal emails is so much more ME friendly-if it's in my inbox I havn't got to go out and search for it- we have to go to THEM. To be honest with you going onto a forum like this is SO bad for my health and I'm sure that goes for many. That's why we desperately need to find a way of networking in this way-not just for the Lipkin study but future studies. Otherwise, sorry to be morbid but the decades will just keep flying by and im just fed up of it.
I've experienced the reluctance from big charities-it's like they are part of the cause but there's a protectionist element-they need the funds too.
Any more info on where to vote re the big companies Aileen?-Imagine if we had a million emails worldwide- you know what people THIS CAN BE DONE!
It's an idea but how to do it? I think we'd have to set up a 'brand' with a name and then slowly build up a base of emails. Once it was set up we could potentially make millions for research -the many donating a bit.
Don't know if anyone's seen I think it's called, may12.org who do campaigning

 

[Seven7]

I usually don't know because of the format used. If it is a thread and I check new posts they get lost in the updated threads. If we have a left header with links that are permanent independently of the activity would be better. I do not go to forums and search, usually I just hit the new posts in forums and only read that. But if there was a lot of activity by page 4 I am done looking. Just my personal observation.

 

[Aileen]

We have a "fundraising" section here. That is where info about all these contests are usually posted. There is one in the UK you can vote for on now.

 

[shahida]

I usually don't know because of the format used. If it is a thread and I check new posts they get lost in the updated threads. If we have a left header with links that are permanent independently of the activity would be better. I do not go to forums and search, usually I just hit the new posts in forums and only read that. But if there was a lot of activity by page 4 I am done looking. Just my personal observation.

that's a good idea maybe someone should incorporate it into the site?

 

[shahida]

There's a new thread over in "General ME/CFS News" discussing this short segment involving CFS on Oprah.com:
http://www.oprah.com/health/do-you-have-an-autoimmune-disease-mystery-illness

This seems like an opportunity to capitalize on Oprah's media power. There have been several comments to the article already and suggestions that people try to contact Oprah.

I'm thinking that this might be a case where a communication from "The Microbiome Discovery Project" or " The Columbia Center for Infection and Immunity" might have a much better chance of catching the attention of someone at Oprah.com than a flood of individual emails. Something in an "official" capacity, especially coming from, or endorsed by, a known institution like Columbia University seems more likely to make it to Oprah's desk than comments from random names off the internet.

Oprah is nothing if not media-savvy. It seems to me that a story about how the world's most famous virus hunter was denied funding for CFS, and is resorting to crowd-funding, makes a compelling headline Oprah might be interested in. Who knows, maybe Oprah might even make a contribution, or issue a "matching challenge", if someone can get her attention. We desperately need people in powerful places, and Oprah is an influential woman who knows how to use the media.

I'm not adverse to a bunch of emails and comments to Oprah.com, but I'm thinking an "official" effort might get better a better result.

Thoughts?

BTW, I wrote this in the spirit of sharing and kicking around ideas. I don't want to seem like I'm armchair quarterbacking all the fantastic work that the team is doing. I'm certainly not offended if other people have other ideas...the more ideas the better. Also, this might not be the right thread for this discussion...it seems like there was another one, but I couldn't find it.

That's a great idea-what about sending the company a dvd showing the real life existence of people with ME-in the UK there's 'voices in the shadows' which is supposed to be really good but there may be US equivalents. I imagine that whilst Oprah is informative it's perhaps the human stories that pull people in and capture the attention of such companies in the sense of 'they live like this?'-then the wider context and issues you mention

 

[Bob]

This week, we're continuing our series of blogs based partly on an interview with Dr Lipkin, in relation to the ME/CFS gut microbiome study.


Dr Ian Lipkin’s Study of the Gut Microbiome in ME/CFS Patients
Blog Series
Part 5 of 9
Crowdfunding
http://www.microbediscovery.org/blog/2014/05/27/dr-ian-lipkin-blog-part-5-of-9/

Here's an extract from today's blog:

Read more:
http://www.microbediscovery.org/blog/2014/05/27/dr-ian-lipkin-blog-part-5-of-9/

 

[Bob]

This week, we're continuing our series of blogs based partly on an interview with Dr Lipkin, in relation to the ME/CFS gut microbiome study.


Dr Ian Lipkin’s Study of the Gut Microbiome in ME/CFS Patients
Blog Series. Part 6 of 9.
The hypothesis
http://www.microbediscovery.org/blog/2014/05/28/dr-ian-lipkin-blog-part-6-of-9/

Here's an extract from today's blog:

Read more:
http://www.microbediscovery.org/blog/2014/05/28/dr-ian-lipkin-blog-part-6-of-9/

 

[Bob]

Latest Crowdfunding Update.

To date, the total raised is:

$62,857 from 408 donations

Many many thanks to everyone for all your generous support!

 

[Bob]

This week, we're continuing our series of blogs based partly on an interview with Dr Lipkin, in relation to the ME/CFS gut microbiome study.


Dr Ian Lipkin’s Study of the Gut Microbiome in ME/CFS Patients
Blog Series. Part 7 of 9.
The Study
http://www.microbediscovery.org/blog/2014/05/29/dr-ian-lipkin-blog-part-7-of-9/

Here's an extract from today's blog:

Read more:
http://www.microbediscovery.org/blog/2014/05/29/dr-ian-lipkin-blog-part-7-of-9/

 

[Bob]

New crowdfunding total.

Total raised is:

$62,907 from 409 donations.

Thanku everyone for all yr continued support.

Every donation counts.