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

[adreno]

I can see the attraction of that idea, but the Microbe Discovery Project isn't a charity - it's a project run by an institution within a university, and it's the entire university that's set up as a charity, so that's not something that would be possible for this project on Ebay (as I understand it).

I know that, but why isn't it possible to set up a charity, that:

1) Can accept PayPal donations and funnel the money to the MDP
2) Can be donated to from eBay, Amazon and others

I routinely sell stuff on Ebay and then just directly donate the money to ME projects or charities, regardless of whether the charity is set up on Ebay.

Well that's great, but I'm guessing the majority isn't as saintly.

 

[Sasha]

I just made my monthly donation and timed it with a stopwatch. One minute and fifteen seconds, my friends!

The fact that it's a repeat donation speeds things up - on the first page where the form wants your name and so on, if you just click on the first field, Google autofills all the fields for you. The only info I had to enter by hand was my credit card info on the final page - on the others, it was just a matter of leaving the default options ticked (as will be the case for most of us).

I can understand PWME with brainfog having problems with any form, but for anyone whose brain is ticking along fairly normally, all this form takes is a little time. Yes, it's not as quick and easy as PayPal but in the grand scheme of things, it's not that arduous. It's faster than writing and mailing a cheque, which we all used to do to make donations to charities (or am I showing my age?).

For those with families and friends who don't want to bother because PayPal isn't available, have you thought of getting those people (who trust you, presumably) to pay donations into your own PayPal account so that you can make the (small) effort of paying to the CII on their behalf? Columbia immediately email you a donation receipt that specifies the amount you paid, so you could forward that email to your friend/rellie as proof of payment.

 

[Sasha]

I know that, but why isn't it possible to set up a charity, that:

1) Can accept PayPal donations and funnel the money to the MDP
2) Can be donated to from eBay, Amazon and others

That would be the ideal, I think, but I remember that there were discussions around this when the crowdfunding project was being set up, and the advice was that setting up a charity is a very considerable and time-consuming undertaking and is a very lengthy process - it seemed to be something well beyond a small group of very sick patients to manage in the timeframe available (i.e. by the end of the year). I don't know if setting up a charity within a charity is something that the CII itself would be allowed to do within Columbia University rules but, being within Columbia University, I assume they'd still have to stick to not allowing PayPal payments.

Well that's great, but I'm guessing the majority isn't as saintly.

It's no more saintly than delivering a cut to a charity that's set up on Ebay - it's just an extra administrative step (which takes the one minute fifteen secs that I just mentioned).

 

[adreno]

@Sasha

You are totally missing the point. I'm talking about making it convenient for the masses to donate, not for me and my family or friends. Or perhaps you think we can fund this ourselves?

at the rate of few donations per week now, I'm guessing it's only the people reading this thread who is donating.

 

[Sasha]

@Sasha

You are totally missing the point. I'm talking about making it convenient for the masses to donate, not for me and my family or friends. Or perhaps you think we can fund this ourselves?

No, I understand that everyone wants it to be easy for people to donate and that we all feel that we may be losing donors because the process isn't as quick and easy as other crowdfunding mechanisms, especially those that use PayPal. I completely get it and I agree with you.

I'm not trying to bat away your suggestions or downplay the wish for things to be different, and I hope I didn't come across that way. I was trying to explain why things aren't the way we'd like and what the roadblocks are (and if I've got anything wrong, I hope the team will correct me). I was also trying to suggest some ways that we can help others to donate in the present circumstances.

 

[adreno]

It's no more saintly than delivering a cut to a charity that's set up on Ebay - it's just an extra administrative step (which takes the one minute fifteen secs that I just mentioned).

Yes, and you are preaching to the choir here. The reality is that most people don't go through that "extra administrative step".

You are continually arguing how easy it is to donate. Well you don't have to convince the readers here. But the numbers speak for themselves, there aren't many donations coming in.

But if it can't be done, it can't be done.

 

[Simon]

My donation message

I've just made another donation. I've spent 2 decades watching under-funded researchers struggle with too-small studies, with little progress to date. It's great to see major players like Drs Ian Lipkin and Mady enter the field, both for the expertise they bring to bear and the kudos it brings to research into the illness. This helps give me real hope at last that ME research will get somewhere.

 

[Sasha]

Bacteria art!

http://www.fastcodesign.com/1673240/the-social-behavior-of-bacteria-trippily-explored-in-art#1

 

[aimossy]

On Microbediscovery FB page.

A poster with tear off strips is now available to download from our website. These are for anyone to distribute where they wish to and take to groups and/or pass on to organisations. Some are wanting to drop these to doctors' waiting rooms. Here is the link below. Thank you everyone!
http://www.microbediscovery.org/download-center/

 

[aimossy]

New from the FB page.

Donation Message:

Go Lipkin!
I honestly believe that the CFI initiative, the coming together of top clinicians and world-renowned scientists from Columbia like Drs. Lipkin and Hornig, and their continuing desire to work on new projects that will help reveal the nature of ME/CFS: is the best thing that has happened in my world for decades and I am immensely grateful to each and every one of them.
...
I cannot afford to donate very much, but each time I do I know it is going to the best assembled teams on the planet. To recently read and watch Dr Lipkin being consulted as a top expert over the Ebola outbreak, really brought home to me just how fortunate I am to have such a scientist working on my behalf.

The team's work to date has already made a difference to me. People sit up and take notice when research is presented by them. The determination of biomarkers in the blood, the linking of specific cytokines to cognitive dysfunction etc. and the very size of the cohorts that can now be employed - which are unlike anything we have seen before in this field - are having an impact and will continue to do so.

I have every confidence that if we can help to ensure this team from Columbia remain engaged in ME/CFS then further discoveries can, and will, be made and I wish them every success.
I very much look forward to reading and sharing their published work in the very near future.

 

[aimossy]

More from the page

Dr. Lipkin separates fact from fiction in this new OpEd for The Wall Street Journal--"Ebola: How worried should we be?"

During a time when public health leaders are continually forced to assess and re-assess budgets, Dr. Lipkin clarifies t...he risks of diminished funding for the agencies charged with improving global health. Today he issues a call to action to every elected official, every policymaker, every philanthropist, and everyone interested in population health – it is an important and timely piece.

It is an amazing thing to have researchers on a par with Drs. Lipkin and Hornig who care about public health on the case with ME/CFS.

http://cii.columbia.edu/blog.aspx?cid=VHn8QL

 

[aimossy]

More from FB.. I honestly enjoy watching the page..just saying. They have 800 likes now
Im happy to try post new stuff up here when I can. I think the team might be really busy with the more meaty stuff and cant do this as well and maybe we should. If there is big stuff that goes on there I may even post in in a new thread to help them.

News Article:
“We’ve always known that there are bacteria in our gut,” Kashyap said. “But there were two problems: One, we didn’t actually have the capability to study them. Two, we never realized how much they could actually be contributing to disease.”
http://www.startribune.com/lifestyle/health/269254861.html?page=all&prepage=1&c=y#continue

 

[Sasha]

More from FB.. I honestly enjoy watching the page..just saying. They have 800 likes now
Im happy to try post new stuff up here when I can. I think the team might be really busy with the more meaty stuff and cant do this as well and maybe we should. If there is big stuff that goes on there I may even post in in a new thread to help them.

News Article:
“We’ve always known that there are bacteria in our gut,” Kashyap said. “But there were two problems: One, we didn’t actually have the capability to study them. Two, we never realized how much they could actually be contributing to disease.”
http://www.startribune.com/lifestyle/health/269254861.html?page=all&prepage=1&c=y#continue

@aimossy - I got a phishing alert from Googlechrome when I clicked this link, which blocked the site - wondering if that was just me...

 

[Bob]

We have great news everyone!

The latest crowdfunding total is:

$100,569 from 500 donations!



So we've passed two milestones:

We've passed the $100,000 mark, and we've had 500 donations!

A huge thank-you to everyone in the community and beyond for your generous support for this truly global community project!

 

[Sasha]

That's fantastic!!!

 

[rosie26]

Thank you to the 500 donators. And those who gave big too. Research is the only ticket out of here for most of us. I don't want to go into old age with this endless illness. Any clue is a good clue and will help in piecing this illness together in the long run.

 

[aimossy]

From Facebook.

Action for M.E. have posted that tickets are still available for people to attend the seminar with Dr. Ian Lipkin in London on the 3rd of September. Get in fast folks!
........................................................................................................................................................
Tickets for Professor Lipkin's presentation on infection and M.E./CFS in London on 3 September are still available at https://www.surveymonkey.com/s/lipkinseminar

The seminar will take place from 10am to noon at the offices of Allen & Over...y, at One Bishops Square, London E1 6AD and is open to anyone interested to hear about Prof Lipkin's work focused on infection and M.E./CFS.

Tickets cost £5 per person to contribute towards the cost of the event and includes refreshments (tea, coffee, biscuits - incl. dairy/gluten-free - and fruit) which will be served between 9.30 and 10am.

Following requests from several of our Supporting Members and others, we have agreed to cover the cost of filming leading American researcher Prof Ian Lipkin’s presentation at the seminar in London on Wednesday 3 September that we are jointly hosting with the ME Association.

The film will be made available online to view or download.

 

[aimossy]

Facebook:

A good short video introduction into the human microbiome. Quite easy to watch and take in

https://www.youtube.com/watch?v=5DTrENdWvvM

 

[aimossy]

Facebook:

From www.cfstreatmentguide.com
From an interview with Dr Dan Peterson by Deborah Waroff. Dr. Peterson talks about Dr Lipkin's work.
Abstract:

Q: Is there any way to get researchers to focus on something other than blood? Lymph glands, for... example?

A: The Ian Lipkin studies at Columbia are looking at other tissues – saliva, urine, cerebrospinal fluid. I think he may be one of the first ones to do that. I am really excited about that research. Hopefully, he will help us in terms of biological markers, or pathogens, and possibly autoimmunity, and chemokine and cytokine signaling. I know he is working on all those avenues. We need people with his kind of expertise and quality to be researchers in this field.

http://www.cfstreatmentguide.com/blog/dr-dan-peterson-talks-about-aggressive-treatments-for-mecfs

 

[aimossy]

Facebook:

Here is the video interview with Deborah Waroff and Dr. Dan Peterson from Llewellyn King's ME CFS Alert. They talk about Dr. Lipkin's work 17:11 minutes into the video.

https://www.youtube.com/watch?v=Sdoj53qM97c&list=UUxrPmgVwJ7-gLqZJK_qLeFg#t=1031