Fundraising for Dr Lipkin's study.

[jamie]

3) Set up a formal, registered charity to generate donations for this project:

• This charity should create a visible, effective marketing campaign, including a video with one or more CFS patients appealing for support, similar to the one that Jen did for Canary in a Coalmine.

Hello, I'm new but have been reading hear for about a year. I thought I'd jump in here because I decided wanted to ask friends and family to make a donation and also to forward to friends and extended family. The problem is, that like many have pointed out, Dr, Lipkin's video message and the name of the project (gut microbes?) doesn't do a good job of explaining,

1. The severity of the disease (pulling heartstrings)

2. The injustices we've faced in the forms of lack of funding or many other options. (get people mad at wrongs)

3. What an amazing researcher Dr, Lipkin is and that he gets results, results that may help multiple diseases. That this is a project that would normally be given an automatic green light before all the cuts to research by the government. (Gives people a sense they are putting their money on a good bet.) Obviously Dr, Lipkin can't toot his own horn like this so his video can't do this well. Basically what Sasha said,

4 Ease of payment. I've also seen other donation projects where there is an option to give in honor of someone or remembrance of someone so they can be acknowledged.

I've been sick 30 years and bedridden for 12 and have never asked for anything like this and want to make it count. Not for me, I think my ship has sailed but because this disease deserves it. I know a lot of people who would be happy to donate but I think if there was something like the above quote coming I will wait. I think I may be able to get some big money people involved or make a mini viral thing happen with extended friends and family if there is some new marketing that inspires and informs better.

If it looks like nothing new is coming I will ask family to donate instead of Christmas presents.

That's it, I just thought it might be useful to explain how the marketing is affecting one person who is interested in pushing this campaign.

Thanks to all of you who contribute here. I wish this site had been available back when I first got sick, it might have kept me from mucking it all up. You do great work.

Cheers

 

[Sasha]

If one is really averse to using Columbia's online donation system, then according to this webpage: http://cii.columbia.edu/donate.aspx?Axul69 ...


I would assume that if you indicate Lipkin ME/CFS/Microbiome Study on the check (or make the check out to that) then the donation would go to the right place.

There are different payment methods listed on the crowdfund website, including how to pay by check:

http://www.microbediscovery.org/donate/#DonateCheck

 

[adreno]

15 Techniques Used by Top Nonprofits to Boost Donor Acquisition and Online Fundraising Results

 

[justy]

I may be unpopular for saying this... I tend to think I am up on all the latest research going on and supportive, but for some reason this microbiome study has not grabbed my attention at all. It isn't sexy in the way that accidentally nearly finding a cure is (Rituximab). Even reading through this thread I am no nearer to understanding the project and the implications.

I think a lot of people are finding the study a little esoteric and cant see how it would help. I gather that the micro biome is an exciting new area of research in all sorts of diseases and I suspect that is part of the problem too - it's too new - it might make people think that any real help from this kind fo research is still years and years away.

I think another issue is that many PWME spend a lot of time thinking about diet and their guts and just presume that this wont offer anything new - probiotics, antibiotics, prebiotics, diet changes - pah! tried all that and it didn't work. There is no clear explanation easily visible to patients about how this would be different.

The Norwegian trial raised the funds because Maria took it on as a full time job to raise the funds. I don't think there is anyone doing that for this study.

I agree that perhaps a separate org could be set up to raise the money. This org could have all the easy ways to donate as suggested above and then the org donates the money in a chunk to COLUMBIA.

I think also having smaller goals to get the study underway would be a good idea - I think Invest in Me did this for the UK Rituximab trial?

If a group of people took on the job of fundraising, set up and org to do it through, spent time advocating, educating and making phone calls to philanthropists, celebrity CFS sufferers etc then I think it might start to get somewhere. I know we are all ill so its a big ask, but Maria in Norway was lucky to be in remission after Rituximab treatment (that must have really captured peoples imaginations) and in the UK Invest in ME are run by parents and carers and sufferers together.

Just some ramblings from me...

 

[justy]

Just watched Ian Lipkins appeal on the website - I still don't know what the study is for!

 

[Sean]

15 Techniques Used by Top Nonprofits to Boost Donor Acquisition and Online Fundraising Results

This is an excellent list and I highly recommend everybody read it.

 

[adreno]

Just watched Ian Lipkins appeal on the website - I still don't know what the study is for!

Well, that's a huge problem right there. If people don't understand why this study is important, they are not going to donate.

 

[justy]

Another issue I see with the research is whether patients see the results as directly translating into treatments. The website talks about their work in discovering differences in the microbiome of people with Autism, in still birth and other situations, but as we know this hasn't led to any treatments or in people seeing autism differently.

They also talk about faecal transplant and its success in treating C Diff. Yet it is still not THE treatment for c DIFF and I cant imagine it being so for many more years - and that's just in the US - can anyone imagine the NHS funding full scale faecal transplants any time soon?

Im not criticising the researchers, im suggesting reasons why it isn't grabbing peoples attention. This whole thing needs to be explained and the implications explained to people in a different way.

 

[justy]

On the other hand the page about what is M.E/CFS is excellent. I also see now that the website IS run by volunteers and patients - the website in general is excellent - it is the explanation of the study and the appeal that is not so hot.

I think the nature of the research as cutting edge puts patients off. As I said before, cutting edge research may not yield results that are helpful in the real world immediately and I guess patients are fed up and want quick answers.

Perhaps the research results being announced by Lipkin and Hornig in early 2015 will help to suck people in? I have no idea of this is true as I don't know to what work the results they are going to announce relate and whether it will relate back to this proposed study.

Now I feel like I have unearthed another problem - their are other arms of research and I don't really know what's what. I know Lipkin is working on a number of things, but I don't know what they are or how they tie in together.

 

[Bob]

@justy, perhaps the project's blog series might give some extra background for you, and answer some of your questions:
www.microbediscovery.org/blog/2014/05/19/dr-ian-lipkin-blog-part-1-of-9/
(There are nine parts to it - find the links to the sections on the right-hand-side or at the bottom of webpage.)

 

[adreno]

@justy, perhaps the project's blog series might give some extra background for you, and answer some of your questions:
www.microbediscovery.org/blog/2014/05/19/dr-ian-lipkin-blog-part-1-of-9/
(There are nine parts to it - find the links to the sections on the right-hand-side or at the bottom of webpage.)

But it's not justy that we need to convince, it's the masses out there that we want to donate. And people are not going to read through a nine-part blog before they decide to donate. The goals of the study should be clear and concise, for everyone to understand. I believe this is also @justy's point.

 

[Sinclair]

I might sound pretty obvious, but has anyone ever tried to reach celebrities with success experiences in fundraising such as Bob Geldoff or Bono? It is amazing what they got with their recent involvement with Ebola.

 

[Bob]

But it's not justy that we need to convince, it's the masses out there that we want to donate. And people are not going to read through a nine-part blog before they decide to donate. The goals of the study should be clear and concise, for everyone to understand. I believe this is also @justy's point.

Thank you Adreno, yes, I understand the points that Justy and you are making. But I had the feeling that Justy has perhaps not taken a keen interest in the project before now, or followed the Facebook account or looked at the website, in which case I thought she might like to read the blog series about the project.

So I simply posted the blog for Justy' s personal interest, and not as a campaign strategy.
The blog series is just a small fraction of the material that's been promoted to the public.

 

[geraldt52]

...If it looks like nothing new is coming I will ask family to donate instead of Christmas presents...

I think that this is something that all of us can do, to get a significant last minute push before the program ends at the end of the year. My wife and I made this decision several years ago...no more big gifts at Christmas, just token gifts and a donation. I'd encourage everybody to really think about it.

The suggestions everyone has made might make a difference for an ongoing campaign, and I hope that happens, but I don't see any way that they will make a difference in this one...there's just not enough time to implement them, and help is in short supply. Let's do what we can to finish this one off with a flourish!!!

As to Dr. Lipkin and what the microbiome is all about, I think it might be helpful for people to think of testing of the microbiome as an alternative to testing of blood, which has yielded nothing, and testing of tissue, which has been deemed too invasive. Dr. Lipkin believes he can find the pathogen, find evidence of the flaw, in the microbiome...evidence that has escaped detection in blood. He's a smart guy...he has a history of success...most of all, he wants to help us. How many people of his stature have?

 

[MonkeyMan]

I think that this is something that all of us can do, to get a significant last minute push before the program ends at the end of the year.

Which brings up the question: what's going to happen after the end of the year? Obviously we would need a miracle to reach goal by Dec 31. But what happens on Jan 1 and we're still way short of goal? If I may dare to dream for a moment: ideally, Columbia will transfer control of the fundraising efforts to an outside entity, and this entity will rectify the aforementioned problems and finish raising the money in no time!

Drew

 

[snowathlete]

My two pennies worth then:

Rituximab aside, I think this is the most promising opportunity we've ever had and there must be something in the suggestion that what could come out of this project hasn't been communicated as effectively as it might have been. People may not realise it but they're blowing a golden opportunity here.

But hindsight is a wonderful thing and Its clear a bunch of people have worked hard on this. So frustrating that people have energy to come up with ideas and suggestions at this late stage when they're disappointed with results instead of getting involved much earlier to help avoid that. No one else is going to do it for us and there are people who could do more to help either on this or other stuff even if what they can do is sporadic and slow. The truth is that there is a core smallish number of people in the ME CFS community who I see cropping up fundraising, advocating, informing, supporting, all the time and many are proper sick. Where is everyone else?

Whatever the case, around 3000? people have liked their Facebook page, yet less than a third have donated anything at all. I find that very disappointing.

 

[JT1024]

I am sorry I have not followed this entire thread.. I did read the last several posts.

In my opinion, I don't think everyone is behind Ian Lipkin because there are so many theories/research opportunities out there and people are limited in their ability to: keep up with everything, understand the science behind each initiative, trust the source of the information (many patients have been duped before by organizations appearing to be working for them only to learn that is not the case); contribute financially or personally.

Determining the microbiome of healthy people is not small task. To do the same for specific patient populations seems to be equally massive. My question is how does this bring treatment options closer to patients?

There are numerous other studies seem to be more closely linked to treatment options in the near future.

How the microbiome project translates into actionable treatment options is key to Dr. Lipkin acquiring funding from patients and their families. Limited funds require the demonstration of return on investment.

 

[Sean]

People may not realise it but they're blowing a golden opportunity here.

Agreed. Very frustrating.

But hindsight is a wonderful thing and Its clear a bunch of people have worked hard on this. So frustrating that people have energy to come up with ideas and suggestions at this late stage when they're disappointed with results instead of getting involved much earlier to help avoid that.

In fairness, I don't think anybody thought this appeal would get such a sluggish response, most previous appeals for ME/CFS stuff have done well and fairly quickly, and at least some of these ideas/suggestions now being floated have been floated earlier on (e.g. an easier faster payment system, etc).

One big problem is the amount we are chasing, it is more than double any previous appeal I can recall. (Hence my suggestion to reduce the immediate target to enough to get the study running, then work on getting the rest of the funding afterwards.)

Another is that it might be obvious to you and me and researchers what the value of this study is, but not so obvious to non-patients (and maybe many patients who do not follow this stuff).

Clearly we need to explain better to the world what it is we are trying to achieve and what we need to achieve it. But it is not obvious to this complete novice at fund raising and public relations how to do so. I can assure you that the failure to bring in the funds is of great concern to me, and that I have been racking my brains for a couple of weeks trying to come up with a clear answer.

Besides, it ain't over yet.

The truth is that there is a core smallish number of people in the ME CFS community who I see cropping up fundraising, advocating, informing, supporting,...

True, and those people deserve credit and support. But it is also true for almost every movement for any change ever. A handful drive it along, and the rest follow, to varying degrees. No point in complaining about it, that is just the way it works.

Lastly, and at the risk of stirring up trouble, I would suggest that some elements in the patient community (or claiming to act on our behalf), particularly in the autism-vaccine and XMRV camps, have not been too accommodating nor fair to Lipkin's involvement, even to the point of regarding him as part of the 'enemy' (presumably due his work on ruling out various proposed pet causal factors).

So that might explain some of the disinterest. It is also something that we, as a community, can change in a heartbeat, if we so choose.

 

[Forbin]

I think part 6 of the microbiomediscovery blog sums up the rationale very well.

So Dr Lipkin intends to explore whether an abnormal microbial population within the gut microbiome may trigger or cause cytokine activation which in turn causes the symptoms in ME/CFS patients.

For example, perhaps there could be an unusual fungal overgrowth in the gut of a subset of ME/CFS patients, resulting in cytokine abnormalities that may, in turn, be causing the symptoms.

Take, for example, cryptococcus neoformans, a human fungal pathogen that mainly infects individuals with compromised immune systems, such as patients undergoing transplant or those afflicted with HIV/AIDS. Acute infections with this fungus are said to be rare in those with fully functioning immune systems, but cryptococcus neoformans can infect the central nervous system and cause inflammation of the brain. Symptoms of a central nervous infection may include fever, headache, lethargy, and cognitive symptoms. Perhaps the presence of a similar fungus could cause chronic symptoms in some ME/CFS patients? At this point in time, this is just conjecture, but Dr Lipkin will be able to detect any such fungal infection, and any viral infection or unusual population of bacteria in the gut.

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

Personally, I think a fungus would be an interesting possibility as it could be air, food, or waterborne and could potentially cause "outbreaks" without human transmission. Dr. Lipkin has previously mentioned a study he participated in that found elevated candida levels in the troposphere co-incident with outbreaks of Kawasaki disease in Japan.

[All the bolding above and below is mine.]

Tropospheric winds from northeastern China carry the etiologic agent of Kawasaki disease from its source to Japan
PNAS June 13, 2014

...Sampling campaigns over Japan during the KD [Kawasaki Disease] season detected major differences in the microbiota of the tropospheric aerosols compared with ground aerosols, with the unexpected finding of the Candida species as the dominant fungus from aloft samples (54% of all fungal strains). These results, consistent with the Candida animal model for KD, provide support for the concept and feasibility of a windborne pathogen. A fungal toxin could be pursued as a possible etiologic agent of KD, consistent with an agricultural source, a short incubation time and synchronized outbreaks. Our study suggests that the causative agent of KD is a preformed toxin or environmental agent rather than an organism requiring replication. We propose a new paradigm whereby an idiosyncratic immune response, influenced by host genetics triggered by an environmental exposure carried on winds, results in the clinical syndrome known as acute KD.

http://www.pnas.org/content/111/22/7952.abstract

This concept is further discussed here:

NATURE | NEWS FEATURE
Infectious disease: Blowing in the wind
http://www.nature.com/news/infectious-disease-blowing-in-the-wind-1.10374

 

[adreno]

So frustrating that people have energy to come up with ideas and suggestions at this late stage when they're disappointed with results instead of getting involved much earlier to help avoid that.

Fine. First we get blamed for being sick, then we get blamed for not being able to raise the money to support our own research. The truth is that many of these suggestions were made long ago, in the main fundraising thread.

I don't see much we can do, when we don't have any control over the project website or the donation process. Sure we could set up our own website, but it's the official one that counts. There are lots of great suggestions in the article I quoted earlier, none of which we can implement.

Whatever the case, around 3000? people have liked their Facebook page, yet less than a third have donated anything at all. I find that very disappointing.

Well, that makes over 2000 assholes, because they haven't donated, right? Or maybe it's because 60% were on mobiles. That leaves 1200 being able to donate, of which 3/4 might have done so. Not bad, IMO.

It's time to forget the idealist nonsense and accept how human nature works. Those of us who are sick are prepared to go through hell to donate. For regular people, if it can't be done in 2 minutes on a mobile device, forget it. They're already onto something else.