Help with raising funds for Prof. Lipkin's study

[aimossy]

I am personally very keen on Lipkins work. I think so much of what Wally is saying is wise.
I would ask the same question about lots of research that is happening and getting funded through the internet.
I have concerns with respect to knowing what is quality research and what projects will be most beneficial in gaining ground for ME/CFS. This can be hard to discern. It seems a difficult thing that I hope gets tackled in future.
I hope to pose these questions to my own home organisation strongly. I made a small start with this.
I feel that they in trying to help look after our interests should provide people with clear overviews and provide a bit of a watch dog service in a sense.
The amount of research happening also seems to be climbing and I would like to have some confidence that when I donate to something its not a redundant waste of patient driven resource that could benefit myself and fellow patients.
In saying that I would still donate to some crowd funding or something on lipkins look into the gut, so long as he is OK and comfortable about it happening and no one pops up with good reasoning behind it being a bad idea.
Thanks for bringing that up Wally.

 

[Firestormm]

@Wally I would respectfully apply the same to ME/CFS experts, in whom a lot of trust is placed. Lipkin's team are expert as his recent high-powered study has demonstrated and I don't think many would argue with Mady Hornig's qualifications either. We do need studies that bring together samples from expert clinicians and subject them to scrutiny in large-scale study.

But I do agree that more information about this study would be preferable, and hopefully will be obtained. We are hoping to write (and perhaps launch funding for) this one in 2014 with an interview perhaps with those concerned. I myself have concerns about the expressed enthusiasm for the microbiome. I don't think it will be as easy as perhaps some believe or as fruitful either.

Whoever does the science so long as it is good science with a large control and cohort I don't mind. I think people tend to be concerned when it seems to close down areas they themselves have become invested in or committed to but I think it is high-time some of the theories out there were put to the test, and so I am pleased to see more money entering the field and with world-class scientists willing to work within it.

It wasn't too long ago when we couldn't get anybody interested in ME science.

Lipkin of course referred to this study in his recent broadcast and you can read our article and transcript here: http://phoenixrising.me/archives/19083

And let's not forget, that while his didn't find pathogens, he did uncover what may prove to be very interesting biomarkers, and very unusual ones at that. The differences found at 3 years was unexpected and something not really seen before. It needs to be followed up and explained, but could prove very useful to clinicians and patients alike.

 

[Firestormm]

Just to add that Ian Lipkin will now be the opening guest speaker at the IACFS/ME Conference in March 20-23, 2014.

 

[Wally]

@Wally I would respectfully apply the same to ME/CFS experts, in whom a lot of trust is placed. . . .

I agree that the same standards should apply to all those who propose to do research related to this illness. My point being that it should not matter if a researcher is well known or not. Before we as a patient community stand behind someone who proposes or is currently doing research in this field, we need to do our homework. Before a large Foundation decides to hand money over to anyone, they usually (but not always) have a vetting process that the researcher/institution must go through to determine if the money they will be donating will be spent in a manner that they would like to see happen.

There is no reason that our patient community cannot have the same power as a large Foundation, if we take the time and initiative to make this a priority. I have waited to see if the subject of funding the Lipkin study would get any traction to see if there really was going to be a push to start fundraising. It appears from this thread that perhaps this may happen and I wanted to throw in my two cents before the train leaves the station. Yes, I realize that all of this takes time and a large amount effort on the part of people who are very ill and who may already be working on more than their fair share of projects for this community. However, I still think it is worth the time to discuss and research this a little more before a big fundraising push gets underway. Better to do it right the first time.

I recently had a similar conversation with Ryan Prior, who is working on the documentary "A Blue Ribbon: The ME and CFS Documentary" - http://phoenixrising.me/archives/21429. Ryan has definitely thought these types of questions through, which was evident when I quizzed him about funding for his Foundation and his documentary. I am sure that we have people in our patient community who have prior professional experience in how you develop the right type of questions to ask and/or the right kind of paper work needed for review before agreeing to fund a project. I thought the Kickstarter campaign that Jennifer Brea did for the documentary "Canary in a Coal Mine" was wonderful and it really helped uplift and empower our patient community, but even with a fundraising project like that each individual who contributes money needs to feel very comfortable as to how their money will be spent.

Our time, resources and energy our very precious, but especially so because of how this illness beats us up in more ways than one. Together we can try to marshal are energy and brain capacity to come up with some great ideas about future fundraising projects. I am only suggesting that the questions come first for anyone who is asking for monetary support from our patient community, especially in light of the increase in interest this illness seems to beginning to generate.

Wally - O.K., Wally has now concluded his/her remarks about fundraising and is now going back to sleep to try to recharge some very weak batteries.

 

[Tuha]

If you will decide to do fundraising for this study I would have time and energy to help you.
I think we could copy Maria Gjerpe MEandYou campaign and Canary in a coal mine campaign which were very successful.

 

[acer2000]

I think that it is important for the micro biome study to be done. GI symptoms are almost universal in ME/CFS, yet little research has been done into why and what it means. I think we are at a unique time where a lot of money is going into micro biome studies, its captured the interest of the scientific community, *and* we have a very well respected researcher wanting to apply this technique to our illness. As a patient community, I think we should find a way to facilitate this research while we have the spotlight.

 

[Wally]

Acer,

Do you feel comfortable supporting this research in the manner you have seen it presented by Dr. Lipkin and/or Columbia University?

Wally

 

[acer2000]

I'm not saying I'd blindly support it. I think your idea of finding out more info would be indicated and is prudent. But in general, I think that someone should do a microbiome study on ME/CFS patients that includes sequencing of new/unknown GI flora at some point. I think we should get whatever info we need and seriously consider it. Especially since we have the attention of a researcher who is proposing it.

 

[Firestormm]

If you will decide to do fundraising for this study I would have time and energy to help you.
I think we could copy Maria Gjerpe MEandYou campaign and Canary in a coal mine campaign which were very successful.

I should make something clearer. Phoenix may not be in a position to 'run' any crowd-source campaign. I don't think our charter permits the organising of something like that for someone else's benefit.

Personally, I would prefer Columbia to organise it, and we can help by promoting it. I'd rather like to see the whole community get behind this one: 'Lipkin' does use samples from well-known and established ME clinical experts.

But if an interview with the team can be arranged, then we can find out more. It sounds like Columbia would prefer the community organise a funding drive - they are scientists after-all.

Anyway, it's one to properly discuss and sort out in January I think. Vli has just moved continents!!

 

[Wally]

I should make something clearer. Phoenix may not be in a position to 'run' any crowd-source campaign. I don't think our charter permits the organising of something like that for someone else's benefit.

Personally, I would prefer Columbia to organise it, and we can help by promoting it. I'd rather like to see the whole community get behind this one: 'Lipkin' does use samples from well-known and established ME clinical experts.

But if an interview with the team can be arranged, then we can find out more. It sounds like Columbia would prefer the community organise a funding drive - they are scientists after-all.

Anyway, it's one to properly discuss and sort out in January I think. Vli has just moved continents!!

I agree. Definitely worth considering this type of research and looking into it further to figure out what we as a patient community either through a Forum or other organization can do to support research while providing a full vetting of the proposed research for the patient community. January sounds like a much better option to try to take a look at this type of project.

Happy Holidays to you all.

Hopefully, we will be able to get some much needed rest as this year comes to a close and bring a little more energy to all the projects on the list for 2014.

 

[jenbooks]

Following this thread.

 

[Tuha]

I should make something clearer. Phoenix may not be in a position to 'run' any crowd-source campaign. I don't think our charter permits the organising of something like that for someone else's benefit.

Personally, I would prefer Columbia to organise it, and we can help by promoting it. I'd rather like to see the whole community get behind this one: 'Lipkin' does use samples from well-known and established ME clinical experts.

But if an interview with the team can be arranged, then we can find out more. It sounds like Columbia would prefer the community organise a funding drive - they are scientists after-all.

Anyway, it's one to properly discuss and sort out in January I think. Vli has just moved continents!!

I didnt expect that PR will take this fundraising campaign. I just saw that people are talking about fundraising for Lipkin project here and I would maybe like to join this effort if people will decide to do it.

Also here was raised the question if Lipkin study is valuable. I would say yes but I dont know anything about science. So maybe to solve this question is the most important on the beginning.
If we will feel that this study is valuable - we have just to decide to do the campaign for fundraising and to have the people who will take care about it. I think Lipkin´s project has a huge potential to be successful with crowdfunding.

I followed some fundraising campaigns and i think we could copy everything from them - I think it´s important to have own web site and facebook page for each fundraising project. Of course PR could do good job with promoting this campaign.

 

[RyanPrior]

@Wally

When fundraising for our documentary or for our non-profit, I think we get a slightly different set of questions. But overall, when fundraising for movies, research, or building houses the main thing to keep an eye on is organizational overhead. My dad is also in the non-profit sector so we get a good bit of advice from him as well. Basically a non-profit usually should have no more than 25% of the donations going to overhead. At least 75% should go directly to program expenses (building houses, doing research, etc.). It's better if 85% is direct program expense, which is what we try to do with Blue Ribbon Foundation.

In the case of Columbia, if you use the link the University is showing, I think people might want to know if that money is going directly to Lipkin's lab. Some of course would have to go to the overhead of running their development office or the administrators who help run Lipkin's office. It can't/won't/shouldn't go completely 100% to his research because he can't do his thing unless the entire University is functioning.

When using Kickstarter or Indiegogo (Indiegogo can work for medical research, but Kickstarter is for funding art or business products) you also have to just be aware that those sites take a cut of the funds. Kickstarter took about 5% from us for our movie and then another 2.5% for the credit card processing. Indiegogo will actually take more, perhaps around 10% I think? So if you want to respect the rule of 75-85% of funds raised going directly to the research, you have to be aware that Indiegogo will eat up 10% right off the bat. And you may face additional percentage cuts elsewhere along the pipeline to get to Lipkin's lab. But no matter which fundraising service you use, you'll be facing some sort of overhead, which is normal in the non-profit world. Especially when you're trying to raise big money.

With big important projects like this Lipkin study in mind, we created the Step Up for ME platform through our website
www.theblueribbonfoundation.org.
At least in my opinion, crowdfunding can only go so far because the patient population has a limited ability to give. I think the real meat is in the "peer-to-peer" network fundraising which helps empower communities through local fundraisers. We modeled our Step Up for ME approach after similar programs at the American Cancer Society (Relay for Life), Muscular Dystrophy Association, and the Alzheimer's Association (Alzheimer's Walk). Each of the big league foundations for other diseases uses the peer-to-peer model, and have been doing so for many years. We've stood up the Step Up for ME platform the fund the (relatively small) initiatives of our Foundation ($50,000 for the Fellowship annually), but once that goal is reached, I think Step Up for ME should be used for bigger prizes, and a Lipkin study is obviously one such prize.

In short, to me crowdfunding is "preaching to the choir," but the choir in this case does consist of a lot of people on disability. To keep with the religious metaphor, peer-to-peer fundraising is more akin to "expanding the congregation." I'm a fan of peer-to-peer over crowdfunding because 1.) you're tapping into people who are healthier (and wealthier) friends, 2.) you get more publicity and word-of-mouth 3.) you raise the public profile of ME/CFS because you get out of the echo chamber and into the community.

It's going to take awhile to change the culture and get this kind of platform revved up for ME/CFS but I think it's really important for creating a permanent fundraising infrastructure that can be in place constantly raising funds for research over the next 10 years.

ProHealth had a piece on it recently, and I think Phoenix Rising may do something a little down the road on it.
http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=18514

Ryan Prior

 

[Firestormm]

As with many things in life, I think a combination of approaches, and offering choice, is more likely to lead to a positive outcome. Many in our community 'choir' may be on disability benefits, but there is an awful lot of people in that choir, and how many times have I heard it be said that, 'if only everyone gave a dollar'?

I think it is far more important to have a project or an organisation that is open and offering a quality research study. Even studies in the past that have not had the more modern 'crowdsourcing' initiatives haven't done badly. Personally, I wish there was a better way of defining quality, over and above peer-review of initial proposals, but I suspect for many people if an ME charity they support, endorses a specific research project - that is enough for them to take small measure of comfort assuming any such question crosses their radar.

For many people I suspect do not even concern themselves with issues such as quality, or peer-review, come to that. And Lipkin's name will carry a lot of weight with many people, why should it not? Other projects have had that effect when they have comes from names known to our community - and Lipkin's has already drawn independent funding on a large scale.

I do also think that increasingly, more people like to know what it is they are being asked to support before opening their wallets. And, providing we can obtain more information about Lipkin's efforts in this respect, then I can't see any reason why it should not prove as successful as, say, Rituximab fundraising efforts have been.

Enough people are being convinced that work involving the microbiome is something that needs doing. And they are enough theories out there that have people with ME buying supplements and adhering to diets.

I think these new techniques for raising funds, mean that traditional charities have to up their game, and if they have in the past supported investment in research, it might become necessary to have a bit of a rethink.

I wonder though, if raising funds for a specific charity's general research fund are a thing of the past. Used to be - and still is for some - that you might simply donate to a charity, and leave them to determine the eventual project. I wonder if increasingly we shall see more and more science institutions, and the scientists themselves, opening up their projects to direct donations especially in this climate of state cut-backs.

What then becomes the role of traditional ME charities? For me I think I like to take some comfort - however small - from knowing that someone has been approached by a science team, with a proposal for funding, and a peer review has been completed. If a known and respected charity endorses a project - then I might be more inclined to feel it warrants my support.

Personally, I have not supported a direct appeal from any ME expert or scientist, so this is new ground for me to consider. But I don't think we should refrain from offering people a choice - or from seeking to the best of our ability as much detail about a project - any project that seeks public funding - as we can.

 

[acer2000]

Is the Open Medicine Institute involved in raising funds for this? IIRC Lipkin's name was on their list. Just curious.

 

[Firestormm]

Is the Open Medicine Institute involved in raising funds for this? IIRC Lipkin's name was on their list. Just curious.

I don't know Acer, I don't think so, but you raise another good point.

Who reviews the fund-raising projects from OMI prior to them being launched? I mean we also trust Kogelnik (and those others associated with his projects), to be carrying out quality work that is worth supporting, and I dare say it is his name and expertise that will attract people with ME and others to dip into their wallets.

Nobody to my knowledge has carried out e.g. a peer review of any study prior to funds being sought, and they are seeking funds for rather a lot of projects. Perhaps there is something done internally, I would imagine there must be, but I'd have to have a look.

I can't find the thread right now that discussed the latest projects and call for funds. I think @Simon had provided some commentary on their plans.

 

[acer2000]

Well in general, studies need to pass "IRB" approval in order to proceed. Presumably researchers can't raise money for projects until they are approved. But I'm out of my area of expertise here.

 

[Wally]

Well in general, studies need to pass "IRB" approval in order to proceed. Presumably researchers can't raise money for projects until they are approved. But I'm out of my area of expertise here.

I think it would be a good idea to get more information from the Open Medicine Institute/Foundation about the process they use to decide about what research they are proposing be funded and if the Foundation will support outside research and not just what is generated at OMI. I can follow up with Dr. K. with these questions if these type of questions (answers) would be of interest to other members on the Forum or elsewhere.

 

[Firestormm]

I think it would be a good idea to get more information from the Open Medicine Institute/Foundation about the process they use to decide about what research they are proposing be funded and if the Foundation will support outside research and not just what is generated at OMI. I can follow up with Dr. K. with these questions if these type of questions (answers) would be of interest to other members on the Forum or elsewhere.

I don't think Kogelnik is contributing samples to the 'Lipkin pathogen hunt' endeavor. But those other ME experts that did (from memory), Peterson and Montoya etc., would presumably have approved by some means the protocol for each study before agreeing to supply samples.

When it comes to funding, it would be normal practice for a scientist to approach say, a charity here in the UK, with a proposal, and if the charity felt the proposal was interesting and worth consideration, it would be sent for peer review, as well as internally assessed.

It would be interesting to learn what OMI's internal assessment procedure was, though I think for the purposes of this thread, we were initially considering a fundraising promotion for Lipkin's microbiome study. Phoenix is not in a position (yet) to directly fund or consider funding requests.

I think it is down to the institution to come up with initiatives, like OMI have done through Linda, but Columbia are not set-up to do similarly. Making it known to the public that Lipkin has this study underway, and is in need of funds, is perhaps as much as we can do. Though like I said, it would be beneficial to have as much detail as we could, in order to help potential donors make up their own minds as to whether to support the initiative.

We promote a lot of ventures that are similar to Lipkins, including OMI, I don't think we need complete complex assessments as to merit in every case. Not unless we - as Phoenix - were to provide our own funds which we are not in a position to do.

 

[Wally]

I don't think Kogelnik is contributing samples to the 'Lipkin pathogen hunt' endeavor. But those other ME experts that did (from memory), Peterson and Montoya etc., would presumably have approved by some means the protocol for each study before agreeing to supply samples.

When it comes to funding, it would be normal practice for a scientist to approach say, a charity here in the UK, with a proposal, and if the charity felt the proposal was interesting and worth consideration, it would be sent for peer review, as well as internally assessed.

It would be interesting to learn what OMI's internal assessment procedure was, though I think for the purposes of this thread, we were initially considering a fundraising promotion for Lipkin's microbiome study. Phoenix is not in a position (yet) to directly fund or consider funding requests.

I think it is down to the institution to come up with initiatives, like OMI have done through Linda, but Columbia are not set-up to do similarly. Making it known to the public that Lipkin has this study underway, and is in need of funds, is perhaps as much as we can do. Though like I said, it would be beneficial to have as much detail as we could, in order to help potential donors make up their own minds as to whether to support the initiative.

We promote a lot of ventures that are similar to Lipkins, including OMI, I don't think we need complete complex assessments as to merit in every case. Not unless we - as Phoenix - were to provide our own funds which we are not in a position to do.

Firestorm,

My response was in response to your mentioning the OMI in this thread. If my response does not fit within the topic of this thread then I can delete it.

However, I do think it is a worthwhile exercise to understand how some of our top ME/CFS experts have dealt with the funding issues such as discussed in this thread related to Dr. Lipkin's research. I also may have a different opinion as to what type of fiduciary duty I believe (any) patient organization should have when promoting a particular research project or researcher. It is quite different when an individual makes a recommendation versus when an organization does this (especially when a number of its members are cognitively challenged as well as physically challenged and would probably need or want to rely on a thorough review done by others with the same concerns/interests as they might have). Perhaps this is why there is some limitations on Phoenix Rising engaging in this type of activity in its role as a non-profit entity with special tax exemptions.

Wally