Lipkin and Hornig ME/CFS Monster Study: Microbes, Immunity & Complex Data

[Cheesus]

Tuha highlighted above an approx. amount of donations received for OMF. I would like to highlight that the Microbe Discovery Project, in the first initial crowdfund the amount of donations was approx. 1350 donations, in saying that I would also like to highlight that the main thread that kicked off the crowdfund got well over 50,000 views in a very short time frame.

That does seem like a huge discrepancy between donations and thread views, and it would seem to imply that only 2.7% of people who viewed the thread donated. However it worth noting that a lot of people will have viewed that thread multiple times as those are not unique IP visits. The real percentage of people who viewed that thread who then went on to donate will be much higher.

As I know telling people you've donated increases the chance they will donate, I would just like to add that I chipped in to Lipkin's study and I will send a donation to the OMF when I get my next benefit payment!

 

[Solstice]

Hey @rosie26 I don't think the problem is the patients not donating. I think the majority of patients are impoverished by years if not decades of being unable to earn money and getting meager government assistance.

My question was more " how do sick patients fundraise" (through bake sale or any other kind of creative outlet, or through organizing fundraising events) when the patients are sick to start with and their family members not exactly supportive that way?

Maybe i'm extremely fortunate then. I can't donate myself at this moment, but have gotten my brothers to donate to the OMF. Luckily my family has been very supportive for the last decade after some initial struggles understanding the disease. I'm gonna ask them to convince more people to donate. If only just 1 euro.

 

[geraldt52]

Hey @rosie26...I don't think the problem is the patients not donating. I think the majority of patients are impoverished by years if not decades of being unable to earn money and getting meager government assistance...

I get that, I really do...I went 7 years without income before getting my Soc Sec benefits. One thing that people can do is to let family and friends know that you don't want any more gifts at birthday, Christmas, etc., that instead you very much want them to contribute anything they wish to give you to something, somewhere to CFS research. It may even help some non-believers to recognize the seriousness of your situation.

 

[Tuha]

I dont agree here. I think we failed like a community. I followed a lot of ME activities (internet contests, fundraising/ crowdfunding campaigns,...) and there was often such a big campaign and publicity for these activities and the patients simply dont join it. Look only at Davis and Lipkin crowdfunding work - there was an enormous work and the campaign had to reach many thousands of patients. But if you look at the number of donors (not donations because many donors donated several times) - only some hundreds of patients donated - it´s really frustraiting. We can find a lot of excuses but even after these excuses the numbers look very bad. Even the easiest actions which takes maybe 1 minute and doesnt cost anything like for example internet contests - there was also very poor patients support.

You can find a lot of ways how to donate even if you cannot do it by yourself. YOu have to do just a small effort. But to complain doesnt change the things. I think we have to try again and again, to make always a big publicity and to hope that more and more patients will join.

So here we can at least try to share the new informations about Lipkin/Davis research, ask our friends to donate and motivate other patients in our small community to donate and so on.

 

[Comet]

I'm wondering if the ticker on this page for the ME/CFS Monster Study is accurate. It hasn't dropped in a few days and I know I made a small donation yesterday.

Does anyone know if it's working?

Edited to clarify ticker direction because poor @JaimeS is so disappointed in the next post. We just can't have that!

 

[JaimeS]

I'm wondering if the ticker on this page for the ME/CFS Monster Study is accurate. It hasn't moved in a few days and I know I made a small donation yesterday.

Does anyone know if it's working?

Note, guys: we want to get it LOWER. I saw this and thought HOLY CRAP THEY ALMOST HAVE THE $5 MILLION ALREADY. Oops. We want it to DROP to ZERO.

Worldwide, if the 20% of PWME who are actually DIAGNOSED contributed $1, we would fully fund this study.

True facts.

I know some of my next paycheck is going there. Please consider writing a post on Facebook or tweeting about this study.

-J

 

[Forbin]

The "odometer" doesn't seem to be real time, or even updated daily. I can understand this, as I'm guessing somebody at Columbia has to go add up the recent donations and then inform microbediscovery.org.

 

[Comet]

The "odometer" doesn't seem to be real time, or even updated daily. I can understand this, as I'm guessing somebody at Columbia has to go add up the recent donations and then inform microbediscovery.org.

Thanks. Was wondering how that all worked! What you say makes sense.

 

[JaimeS]

http://www.meaction.net/2016/08/10/ciis-mecfs-monster-study/ !!!

 

[JaimeS]

....that ticker is still in the same place.

 

[Comet]

http://www.meaction.net/2016/08/10/ciis-mecfs-monster-study/ !!!

 

[JaimeS]

Paycheck came and I donated! Not much, but I hope it's helpful.

microbediscovery.org appears to be down, though. Hopefully it'll be fixed soon!

[Edit: still down -- not good! The 'donate' button still works, but if you want to read more about the study, all those links are at microbediscovery...]

-J

 

[aimossy]

The site now all working again! Thanks @JaimeS

http://microbediscovery.org/

 

[NL93]

Awesome study! A lot of interesting work these days to look forward to. This + OMF + NIH + Haukland.

I would like to make a donation for this study but it seems they only accept credit cards, and i don't have a credit card.

 

[actup]

I have been trying to understand why the Microbe Discovery project has had such a poor patient donation response. Here are some possible reasons I can think of.

1)There are the 25% of me/cfs patients most of whom are probably too ill to respond at all but that leaves the other nebulous 75% with a small percentage involved with me/cfs forums at any one time This is of course anecdotal based on my personal experience as a pwme. I worked for five years post diagnosis with no energy left for forums. I then went on disability but was too ill to participate. The cognitive dysfunction was such I could not complete the donation process. When I improved to a moderate level of illness I was finally able to participate. In addition many of us have ill family members who need some of our rare time and resources Last of all many patients are ill but undiagnosed. There may be an over estimate of available patients to donate. Those of us who are left from that 75% need to donate frequently whatever small amounts we can come up with. Getting rid of a supplement or two helped me donate more regularly along with some other small economies. Many folks though have zero wriggle room in their budgets( waiting months or years for disability approval)



2) Dr Ian Lipkin is not well known in the me/cfs community(compared to other me/cfs researchers). He is a world class scientist with the skill set and sophisticated tools needed for the rigorous me/cfs research that can open doors for significant funding efforts. His work is more likely to be replicated and accepted by the research and physician communities. His research also has the potential to give us viable treatment options within two to three years assuming funding goal met.

3) It's so difficult for patients to get their heads around the perverse government politics involved and the idea that they are expected to provide the majority of the funding for research into me/cfs. There is no precedent I can think of for this. Using HIV for comparison family and medical staff could clearly see how horribly sick patients were prior to treatment availability. Activist momentum was easier to maintain as patients deteriorated quickly. Patients with me/cfs rarely have family /friend support. We are the perfect patient population for governments and private insurance disability companies to keep in the shadows with the CDC's shifting, vague and ambivalent disease and treatment definitions /guidelines

4) Another concern is too many patients feel they must be loyal to the OMF or the microbediscovery project. I donate to both but give more to the microbediscovery project for the reasons listed above under 2).

The above problems require at least some suggested solutions. Crowd funding is underused in our community but may be a way to increase donations 10 fold. Need a quick tutorial for using this technique.Is anyone able to provide support or just suggestions for those wanting to go this route.

I do love the wonderful corroboration which often occurs on PR.

Thanks for hearing me out and feel free to critique.

 

[JaimeS]

I donate to lots of projects, typically. I know I'm not making much of a dent, but it matters to me that I'm contributing.

-J

 

[tyson oberle]

I have been trying to understand why the Microbe Discovery project has had such a poor patient donation response. Here are some possible reasons I can think of.

1)There are the 25% of me/cfs patients most of whom are probably too ill to respond at all but that leaves the other nebulous 75% with a small percentage involved with me/cfs forums at any one time This is of course anecdotal based on my personal experience as a pwme. I worked for five years post diagnosis with no energy left for forums. I then went on disability but was too ill to participate. The cognitive dysfunction was such I could not complete the donation process. When I improved to a moderate level of illness I was finally able to participate. In addition many of us have ill family members who need some of our rare time and resources Last of all many patients are ill but undiagnosed. There may be an over estimate of available patients to donate. Those of us who are left from that 75% need to donate frequently whatever small amounts we can come up with. Getting rid of a supplement or two helped me donate more regularly along with some other small economies. Many folks though have zero wriggle room in their budgets( waiting months or years for disability approval)



2) Dr Ian Lipkin is not well known in the me/cfs community(compared to other me/cfs researchers). He is a world class scientist with the skill set and sophisticated tools needed for the rigorous me/cfs research that can open doors for significant funding efforts. His work is more likely to be replicated and accepted by the research and physician communities. His research also has the potential to give us viable treatment options within two to three years assuming funding goal met.

3) It's so difficult for patients to get their heads around the perverse government politics involved and the idea that they are expected to provide the majority of the funding for research into me/cfs. There is no precedent I can think of for this. Using HIV for comparison family and medical staff could clearly see how horribly sick patients were prior to treatment availability. Activist momentum was easier to maintain as patients deteriorated quickly. Patients with me/cfs rarely have family /friend support. We are the perfect patient population for governments and private insurance disability companies to keep in the shadows with the CDC's shifting, vague and ambivalent disease and treatment definitions /guidelines

4) Another concern is too many patients feel they must be loyal to the OMF or the microbediscovery project. I donate to both but give more to the microbediscovery project for the reasons listed above under 2).

The above problems require at least some suggested solutions. Crowd funding is underused in our community but may be a way to increase donations 10 fold. Need a quick tutorial for using this technique.Is anyone able to provide support or just suggestions for those wanting to go this route.

I do love the wonderful corroboration which often occurs on PR.

Thanks for hearing me out and feel free to critique.

 

[Forbin]

I have been trying to understand why the Microbe Discovery project has had such a poor patient donation response.

Part of the problem may be the sheer scale of the amount needed. A good amount has been raised from small individual donations in the past (as well as from a few very large donations), but even that total amount was considerably less than the $5 Million needed to test and analyze the samples that have now been gathered.

People may be unable to see how that $5 Million goal can be reached, and so they may be sitting on the sidelines, waiting to see what will happen next.

What should happen next is that the NIH should make additional funding available to the CII microbiome project. I mean, if they're not going to co-fund Lipkin (especially after the striking findings of the CII's blood/CSF cytokine studies), who are they going to fund?

I realize that the NIH is funding its internal research with Dr. Nath's program, but I see the CII's microbiome project as sort of a litmus test as to whether the NIH is serious about getting ME/CFS on the road to financial parity with other diseases that, oh, you know... disable over a million US citizens.

I would still encourage patients to make even small donations, if they can. It may be as much a political act as a donation to research - hopefully embarrassing... uh, "prodding" the NIH into action.


I believe a guest on TWIV once referred to the $9-13M that the CDC diverted from CFS research in the 1990's as "rounding error." Dear Dr. Collins - we could use such a "rounding error" in our favor now.

 

[tyson oberle]

@actup I donated $50 a week ago. That was the only donation for CFS/ME that I have ever made and I will probably donate again. How do you know that there has been "such a poor patient donation response"? Do you know what percentage of phoenix rising forum members have donated to the Microbe Discovery project? And how much in your estimation does every phoenix rising member need to donate to meet the required funds needed?

 

[JaimeS]

People may be unable to see how that $5 Million goal can be reached, and so they may be sitting on the sidelines, waiting to see what will happen next.

What should happen next is that the NIH should make at least some funding available to the CII microbiome project.

They did, actually -- they funded the collection phase. It's paltry, though.

I agree with you that the five million seems insurmountable to the average person.

I also submit the possibility that no one has been updating the tracker. It's been on about 9000 for ages.