• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Fundraising for Dr Lipkin's study.

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Actually, we could do with some volunteers in two areas...

1. As I've mentioned above, we haven't had a decent response from local and regional ME/CFS support groups in the US, and it's not for a lack of contacting them. If anyone feels that they would be able to get a positive response from a number of them, then please contact me. Or perhaps a small group could coordinate with each other to do this.

2. We could use someone to extract info from our vast range of material (blogs/articles/website/facebook etc.), and convert it into catchy bite-size quotes to regularly place onto Facebook, the forum, and 140 character messages for Twitter. Again, if you think you can help with this, then please contact me.

These roles can be carried out in your own time at your own pace, and there'd be no expectations on you to complete any tasks. So, there'd be absolutely no pressure if you're not sure about your capacity. :)
 
Last edited:

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I have a question for everyone here - why haven't the regional and local US support groups got on board with this, and promoted the project massively? The UK patient support groups are on board, the Norwegians are on board, we've had international interest from very many countries including as far as Japan, despite the language barrier, and even the CAA has mentioned us. But the regional/local US groups are largely silent. Oh, except the Massachusetts group has been very supportive, but I can't think of any others. (Disclaimer: apologies if I've temporarily forgotten a supportive US group.)
 
Last edited:

Anne

Senior Member
Messages
295
Have now read the whole thread.

@Bob : I will try to get one of the Scandinavian support groups on board.

About PayPal: I've used it a lot and never had any trouble.

I agree fully with Sean on this:

I remain of the view that every extra click and bit of data entry required is a disincentive to donors..

So we would need easy ways to donate to get this going in a big way. Possibly we would need a separate organization/charity probably to be set up to raise the money - with all the easy donation options! - and then transfer the money to Columbia. This is how the Norwegian You and ME campaign was done - donations were not made directly to the Haukeland University, they were made to You and ME and then transferred on to Haukeland.

Possible?
 

bel canto

Senior Member
Messages
246
I'm sorry, Bob. My comment was specific to the description right before it about how it was described on facebook microbiome. Searching for microbiome on fb doesn't bring up the website. Could you provide the link to that and to the twitter account?

The efforts by you and others related to this project are incredibly appreciated - I know it's been a lot of time and effort. Mea culpa.
 

Anne

Senior Member
Messages
295
OK, I'm doing my bit now! Just published a public Facebook note and am spreading the word:
https://www.facebook.com/notes/anne-örtegren/prof-lipkin-stannar-den-viktigaste-forskaren-kvar-i-me-fältet-avgörande-insamlin/10152498044559632

I'm a little late with the 5 dollar thing, I know, but even though the campaign has ended I figure it's a good way to get people donating.

Have contacted one of the Scandinavian ME org.s.

@Bob and "colleagues", are you publishing stuff in every edition of the ME Chronicle?
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
OK, so the crowdfund team has been listening, and I'm going to try to address the major points that have been raised in this thread. Apologies if I don't respond to every point raised. The answers might not satisfy everyone, but we hope they will shed some light on the situation.

I think possibly our biggest selling point is Dr Lipkin himself, and so that's where much of the crowdfunding emphasis has been during the campaign. Having Lipkin involved in ME/CFS research is a strong, simple and attractive message. As others have said in this thread, Lipkin's involvement in ME/CFS could potentially be absolutely transformative for the field. It seems almost impossible to over-sell Lipkin's scientific credentials. Also, of course, there's Dr Mady Hornig, who is also a world-class researcher and who seems to be very popular within the community.

But we've also attempted to explain the research itself to people who are interested, in both simple and detailed terms. If people have been following the campaign for a period of time then (for anyone who wants to read about it) we have attempted to explain the nature of Dr Lipkin's proposed research, and Dr Lipkin's overall ME/CFS research strategy, and his scientific credentials. We really have put a lot of work into making information available about these issues, in simple and complex terms.

Not all of our promotional work (e.g. the shorter crowdfund messages that get posted on Facebook and Twitter) gets posted onto the forum thread, so perhaps some forum users have missed some of our work. Facebook is our main crowdfund portal, along with Twitter, but I hope we post all the essential info onto Phoenix Rising.

As some people have said in this thread, perhaps there is no simplistic message to promote specifically for this particular research study, except to say that Dr Lipkin is looking for answers to ME/CFS in the gut microbiome, as part of a wider and comprehensive research strategy for ME/CFS. (It can't be promoted in the same way as the Rituximab trial - That was a very simple and straightforward sell - If successful, then you've got an immediate treatment for ME/CFS - Whereas Dr Lipkin's research program is extensive and complex. But we've made huge efforts to simplify the promotional message.)

Dr Lipkin's microbiome study itself includes looking for any microbes (viruses, bacteria, fungi) or populations of microbes that may play a part in precipitating or perpetuating ME/CFS, and it includes a serology (antibody) sub-study, and it encompasses a study of cytokines in the same patients. All these results will be correlated for each patient to look for patterns of immune dysregulation. It's exploratory research, with no known outcomes, and it's part of an overall research strategy. The gut microbiome floats some people's boats more than others; we find that many of our supporters are very excited by the study, whereas other aren't so excited about it. But the study has to be seen in overall context, and we have done a lot of work explaining the context (i.e. Lipkin's background, intentions and ME/CFS research strategy) as well as putting out regular simple catchy crowdfunding messages.

His team is also carrying out proteomic and metabolomic studies, as well as a hunt for pathogens in blood plasma, blood cells and spinal fluid. And he's doing more research, details of which I can't remember off-hand. (You can find many of the details in our blog series.) Dr Lipkin has even funded some research himself, for his own scientific curiosity, and to get things moving faster.

Much of the crowdfund campaign work has been carried out on our social media outlets where more than 4000 people follow the Facebook account, and more than 600 follow on Twitter. We've had hundreds of people reposting each of the project's blogs on Facebook, with a lot of positive feedback. So there is quite a bit of interest in the project. We've also been mentioned in national newspaper articles and prominent blogs, and we've had some authors/writers and journalists getting involved, or mentioning us. We've steadily attracted more and more interest in the project, and steadily increased the numbers of our followers, over the months.

I think there are complex reasons why the project hasn't gone as viral as we'd all have hoped, or why the level of interest hasn't translated into donations. Many fair points have been raised and discussed in this thread. Yes, PayPal and Text Giving etc., would have made a difference, but I'm not sure that it would have increased the amount of donations five-fold. So it's not the whole answer.

The small crowdfunding team has been flat-out doing an immense amount of work behind the scenes, for months now. (Just doing the daily admin tasks is a full-time job, and exhausting - But we do so much more than admin tasks.) Columbia are also doing work behind the scenes, trying to attract funds. Some large donations (I think the largest to date is $30,000) have been donated to Columbia, and are included in our crowdfund total. We know that more donations are in the pipeline, or have been pledged.

So, the detailed crowdfunding strategy might not have been perfect, in all areas, but it seems to have quite a wide reach considering the 4000 followers on Facebook. The Facebook page has been very active, and the Phoenix Rising forum thread has been viewed more than 50,000 times! (Yes, that's the correct number of zeros!) Considering the limitations on health and the small number of individuals running the project, it's quite an achievement. I think Marie Gjerpe said that no one should consider running a campaign like this unless they are perfectly healthy, as she knew what an enormous amount of effort is involved in the day-to-day admin let alone the big-promotional drives. Nearly all of the volunteers have experienced health set-backs (some quite major) since starting the project.

Columbia is a huge organisation, and I think it's correct to say (as has been pointed out in this thread) that they aren't geared up for small donations from crowdfunding projects. They're geared up for one-off donations. Dr Lipkin's team have little say over the way the overall university bureaucracy is run. We have pushed for paypal to be available, and have passed on supporters' comments about wanting Paypal, but it's simply not an option for Columbia University at the moment.

To by-pass this issue we would have had to set up a free-standing non-profit organization to channel the funds via PayPal/Just-Giving/Indiegogo/text-giving etc to Columbia. But after careful consideration, early on, the team decided this was too much to take on. Setting up a non-profit is a complex process, which would also have involved legal niceties/complexities re the relationship between the crowdfunding team, the donors and Columbia. We also didn't have a team member resident in the USA who was familiar with US non-profit organisations and tax law.

We know the lack of paypal has made a difference to the campaign, but, as I pointed out above, paypal wouldn't have increased the amount of donations five-fold. So there is more to it than simply introducing paypal.

If anyone wants to create videos for the project then please do, and we'll consider promoting them prominently. (We have appealed to the project's supporters to create personal videos previously.) Yes, a high-profile video from a patient or celebrity would have been nice to have run along-side Dr Lipkin's video.

If anyone would like to create text for the project, that we can promote (e.g. a lay-person's guide to the research), then we'll consider promoting it. We feel that we have done an immense amount work on this already, but we're always open to new material.

If anyone has any other specific contributions that they'd like to make then we'll consider promoting anything that is generated from this thread.

If anyone would like to write to newspapers or celebrities, in a personal capacity, then please do.

Thanks everyone for your interest and enthusiasm. We recognise the disappointment that the project hasn't gone as viral as we'd all have hoped. And we're listening to all your comments. Be assured that we are aware of the issues raised. Any perceived missing elements of the campaign isn't for a lack of awareness. It's all to do with capacity, and/or administrative hurdles. However, we think that perhaps there has been much more awareness-raising about the project on social media, on various blogs, and in the general media, etc, than this thread suggests. But there's always room for more.

Dr Lipkin has said that his grant applications, for the full gut-microbiome study, were turned down twice by the NIH, on spurious grounds (my words, not his - but that's what he meant.) (And, unlike regular ME/CFS researchers, Dr Lipkin is not used to being turned down! He was clearly frustrated and irritated about it.) That's partly why the crowdfunding started.

The crowdfund campaign will be wrapping up at the end of the year, after we've had a good last push for donations leading towards Xmas.

We have some extra information to come, with regards to what will happen after the end of the year. We're just finalising some details with Columbia.
 
Last edited:

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Is it necessary to wrap up at the end of the year?
In terms of this specific crowdfund project, yes, we have to wrap up.
We've been doing it for eight months or so, and we all need a break.

What happens after Dec 31? Most importantly: will these two web links continue to work?
https://giving.columbia.edu/giveonline/?schoolstyle=5881&alloc=21677
http://www.microbediscovery.org/
We're currently sorting out these sort of details with Columbia. We hope to have a definitive answer for you sometime soon.
 

Sean

Senior Member
Messages
7,378
Here is a bucketload of likes for you and the team:

Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like.
Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like.
Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like.
Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like.
Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like.
Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like.
Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like.
Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like.
 

Anne

Senior Member
Messages
295
Thanks, @Bob . I really hope the links can stay operative so you don't lose the long-tail effect.

I had not realized the hurry (that the fundraising campaign was time-limited)! If I had, I think I would have moved faster. Maybe that's what you need to communicate to the ME/CFS org.s then: "Last month of the campaign to raise funds for Lipkin! Last chance!"
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I had not realized the hurry (that the fundraising campaign was time-limited)! If I had, I think I would have moved faster. Maybe that's what you need to communicate to the ME/CFS org.s then: "Last month of the campaign to raise funds for Lipkin! Last chance!"
Thanks Anne. We're on it. We've got the Xmas appeal approaching, and we will make it clear that it's the last month of the campaign. Hopefully, we'll attract more donations than usual in the last month. A last flurry of activity from the community would be welcome!
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Here is a bucketload of likes for you and the team:

Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like.
Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like.
Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like.
Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like.
Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like.
Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like.
Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like.
Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like. Like.
Like! :)
 

adreno

PR activist
Messages
4,841
Facebook-Like-Button-big.png
 

Anne

Senior Member
Messages
295
@Bob : Thank you so much, I realize how much work you have put into this, it's amazing.

I'm trying to spread the word in Scandinavia, will do my best to help with that last push this remaining month.

I didn't manage to get the Swedish patien org involved, I think only because the people on the Board are all either patients or carers, always saturated with work with the org, and especially exhausted now after a roundtable meeting and a seminar with international speakers in Stockholm a few weeks ago (videos here: http://rme.nu/seminarium-2014 )

I might only be able to encourage people to make small donations, but it's better than nothing...