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

[Comet]

I spent a whole year organising the crowd fund for this study, with a team of excellent people

Wow! And thank you all!

 

[geraldt52]

I donated to this and ron davis project but i was thinking... is it a good idea for us to partly fund lots of different studies that require massive amounts of money, what if none of them receive full funding? will the donations be wasted?

Would it not be better to put all our donations into fully funding one of them?

I think a little about this every time I make a donation. I've personally decided to donate to both CII (Lipkin) and OMF (Davis). I have the greatest confidence in both of them, and I want to continue to encourage them both. I also believe there is merit in the old adage about not putting all your eggs in one basket.

I don't worry about dividing my donations evenly, and I suspect that some people will donate to one, some to another, some to both, and it will all average out. What I do worry about is having more people participate, if only in the smallest of ways. A few hundred people doing the donating is just not going to get us there. We need for tens of thousands, still just a small percentage of those affected, to step up and donate at least a little something.

And, I very much do believe that it is the small donations that lead to the big donations. Even the wealthy are not that interested in helping those who they don't perceive, rightly or wrongly, to be trying hard enough to help themselves.

 

[Lynne B]

Many thanks to the whole research team and also to the crowdfunding team. I've donated and wish them the best. Any chance of an updated amount raised so far like an earlier crowdfunding effort? Love to know how we're doing along the way.

All the best.

 

[aimossy]

Many thanks to the whole research team and also to the crowdfunding team. I've donated and wish them the best. Any chance of an updated amount raised so far like an earlier crowdfunding effort? Love to know how we're doing along the way.

All the best.

On social media there are updates, but you can also watch the website ticker on the top of the website here:

http://microbediscovery.org/

 

[Kati]

Donation made. I support Dr Lipkin and Hornig's research. These folks are some of the best brains that medical research has, and they are interested in researching M.E. It deserves to be supported. Heck they both spent an afternoon eating insanely hot peppers in front of a camera for all of us.

If they get enough money, they will figure out what's wrong. I don't have a particular need to tell them what to look for.

 

[Forbin]

I just wanted to say that in feeling the need to voice my support for Dr. Lipkin, et al. on this thread, I certainly did not intend any slight toward the other excellent research groups working to get to the heart of ME/CFS. For personal reasons, the microbiome research simply resonates with my experience, just as others may feel a connection to other research efforts.

As David Letterman used to say, "This is not a competition... please, no wagering."

 

[Ben H]

I think that it´s important to show our support by donating money to Lipkin and Davis. Maybe even more to Lipkin because Davis is personally involved in this disease by his son. So I wouldn´t put all our money just on one researcher.

I think patients should be able to fund Lipkin and Davis. I dont know how it´s with Lipkin but Davis already got attention of some big donors so it should go faster. Now if I remember correctly I think Lipkin got also a million dollar donation the last year after his chilli challange. Often the big donors arrive after seeing many small donations. Also we should try to think how to do a better publicity about these studies. Davis got a lot of trafic on internet and I think it helped a lot.
We are a big community but there is still not too many patients who are donating. I know that for example for Davis fundraising campaign which got on the end some millions - there were only few hundred patients who donated.

Hi Tuha,

Just wanted to clear something up.

The fact that Professor Davis's son Whitney has this disease does not mean that he and OMF need funds any less than Lipkin, quite the contrary. Im not sure why you would think that. I feel it is important to point that out.

Until NIH step up to the task and start funding, which will be when hypothesis are made (an incomprehensible backwards stance with this illness), it is up to us to fund and invest in our health. The more patients that donate, to whichever project (or both) they believe in, the quicker we get to that hypothesis and then the big funding.


B

 

[aimossy]

The sooner Lipkin and Davis groups get good funding the better, we are in dire need of both groups being funded. I hope our community throws their heart and souls behind rallying for donations for both groups who have differing and equally valuable approaches.

These teams can only compliment each other in their work to get things moving - which is all the better for us.

We have an opportunity as a community at large regardless if NIH get their beep together. Too many are sick, too many have died or taken their own lives.

 

[BurnA]

I wish the NIH would fund this study, but they didn't even give enough to cover sample collection, so for now it's down to patients to make this happen.

I really want to believe that the NIH might fund this study yet - given that they did part fund the sample collection, surely it wouldn't make sense for them not to fund the analysis ?
Also, given the current climate with the NIH requesting feedback from patients and researchers on future research - if they don't fund this then what's the point ?

This is one of the most obvious high profile studies they could fund if they wanted to demonstrate a change in approach to ME/CFS research.

 

[Tuha]

Hi Tuha,

Just wanted to clear something up.

The fact that Professor Davis's son Whitney has this disease does not mean that he and OMF need funds any less than Lipkin, quite the contrary. Im not sure why you would think that. I feel it is important to point that out.

B

Hi Ben,

I think you didnt understand good what I wanted to say (maybe because of my english). I just wanted to say that we need to show the patients support and especially to Lipkin because he is a world-class researcher and has money for many projects and research areas outside of ME. Now he seems really motivated to do ME research but maybe if he will always struggle with lack of money he can lose his interest. Prof. Davis has a different situation because he is personaly involved because of his son. Of course it doesnt mean that he doesnt need money. I just wanted to say that I think we need to show our support to these both researchers but maybe Lipkin if he doesnt get money he can lose his interest.

Personally I think ME community should be able to fully fund at least these 2 researchers. I followed several fundraising campaigns and there were always only few hundred patients who donated - we need to get more patients - this is the key but until now we werent successful. That´s our problem now. We need more patients and their families/friends money till the NIH will wake up.

 

[aimossy]

I am not an expert, but I know the hope is that the NIH will come to the party in some way.

The difficulty, I think, is that it's the amount that will be available and when, and even that is not guaranteed. Even if the NIH do a 10 Million RFA shortly, basically Davis and Lipkin's groups need that amount between them and they needed it yesterday. The grants that do get awarded are often stretched out over time as well and shared around groups of researchers and specific need areas, that way they can fund many things - but over time. I think I have that correct but wouldn't mind if @viggster or @Simon or others may correct me or add to this. For example, X researcher was awarded 3.5 million over 5 years to look at XXXX.

There are other needs that also are essential like seeding new researchers into the field, funding other great researchers, as well as the need for clinical centre of excellence development among other things that are not coming to mind right now. So things could be slowed down considerably and exponentially when funds are shared around.

We need this type of research from these two groups for hypothesis generation as well as solidifying stronger findings, so it's basically urgent. Fingers crossed for bigger RFAs, but they have not materialised yet and if they do we are still at risk of going very slowly. I don't think anyone is keen for this work by these two groups to take 5 years and then add in publishing time.

The irony is that if they are funded they will seed hypothesis that many researchers can work on including themselves, also the more support is shown to these groups by the community - the more likely NIH feel the pressure to help them as well. I think this is another reason for the community to roar for them, both in advocacy to get them funded by NIH, and for donating to ourselves - donations from thousands of individuals is an act of advocacy in itself.

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.

Sure not everyone can donate, you wouldn't want people to donate if things are that bad for them, but sharing and vocally supporting can be done if well enough and that is the thing that is hard to get people to do - along with donating. Thousands can and don't. I think we need to voice how important it is to invest in research collectively, but in a way that doesn't make people feel bad if they can't. I know one donor for MDP saved up 5$ a week for 4 weeks to donate $20 dollars and that persons donation is so valuable.

You don't want people breaking the bank, you just want to reach enough people, get them to care enough to donate something, if you can get thousands to understand that it can be done collectively and it makes a difference - we can shift this. The majority of the community has to get behind the efforts.

There are many sentiments on this thread that I agree with regarding fundraising especially some from AB, Tom Kindlon and Gerald T. I hope people out there read them.

Linda Tannenbaum = Legend!

 

[Ben H]

I am not an expert, but I know the hope is that the NIH will come to the party in some way.

The difficulty, I think, is that it's the amount that will be available and when, and even that is not guaranteed. Even if the NIH do a 10 Million RFA shortly, basically Davis and Lipkin's groups need that amount between them and they needed it yesterday. The grants that do get awarded are often stretched out over time as well and shared around groups of researchers and specific need areas, that way they can fund many things - but over time. I think I have that correct but wouldn't mind if @viggster or @Simon or others may correct me or add to this. For example, X researcher was awarded 3.5 million over 5 years to look at XXXX.

There are other needs that also are essential like seeding new researchers into the field, funding other great researchers, as well as the need for clinical centre of excellence development among other things that are not coming to mind right now. So things could be slowed down considerably and exponentially when funds are shared around.

We need this type of research from these two groups for hypothesis generation as well as solidifying stronger findings, so it's basically urgent. Fingers crossed for bigger RFAs, but they have not materialised yet and if they do we are still at risk of going very slowly. I don't think anyone is keen for this work by these two groups to take 5 years and then add in publishing time.

The irony is that if they are funded they will seed hypothesis that many researchers can work on including themselves, also the more support is shown to these groups by the community - the more likely NIH feel the pressure to help them as well. I think this is another reason for the community to roar for them, both in advocacy to get them funded by NIH, and for donating to ourselves - donations from thousands of individuals is an act of advocacy in itself.

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.

Sure not everyone can donate, you wouldn't want people to donate if things are that bad for them, but sharing and vocally supporting can be done if well enough and that is the thing that is hard to get people to do - along with donating. Thousands can and don't. I think we need to voice how important it is to invest in research collectively, but in a way that doesn't make people feel bad if they can't. I know one donor for MDP saved up 5$ a week for 4 weeks to donate $20 dollars and that persons donation is so valuable.

You don't want people breaking the bank, you just want to reach enough people, get them to care enough to donate something, if you can get thousands to understand that it can be done collectively and it makes a difference - we can shift this. The majority of the community has to get behind the efforts.

There are many sentiments on this thread that I agree with regarding fundraising especially some from AB, Tom Kindlon and Gerald T. I hope people out there read them.

Linda Tannenbaum = Legend!

Well said!

And damn straight Linda is a legend!


B

 

[JaimeS]

Sure not everyone can donate, you wouldn't want people to donate if things are that bad for them, but sharing and vocally supporting can be done if well enough

Good point. I'll schedule this to go out on #MEAction's Facebook. Actually, kind of surprised that no one has written an article about this... hint, hint.

Edit: actually, I wrote a post about Severe ME Day and oriented it towards taking action. Donating to this cause is one of the proposed actions.

If you are strapped, there are definitely proposed actions that take no money whatsoever! I did highlight donating to the Open Medicine Foundation, Lipkin and Hornig, and the 25% group, though, because we know that donations are an important form of advocacy: money talks!

http://www.meaction.net/2016/08/08/take-action-on-severe-me-day/

-J

 

[Comet]

The irony is that if they are funded they will seed hypothesis that many researchers can work on including themselves, also the more support is shown to these groups by the community - the more likely NIH feel the pressure to help them as well. I think this is another reason for the community to roar for them, both in advocacy to get them funded by NIH, and for donating to ourselves - donations from thousands of individuals is an act of advocacy in itself.

 

[rosie26]

Wondering if it would be helpful to have a thread solely for posting that we have just made a donation to a research project. This could remind us all if we are able, to make a donation. Like others I think we have to move research along ourselves until we get something significant in the findings - enough to get the big dollars from government.

I thought one thread could be for posting that we have made a donation to a research study. I know I will be giving to more than one researcher. Just a thought. It would be encouraging to see all the donations being made.

 

[Dolphin]

Wondering if it would be helpful to have a thread solely for posting that we have just made a donation to a research project. This could remind us all if we are able, to make a donation. Like others I think we have to move research along ourselves until we get something significant in the findings - enough to get the big dollars from government.

I thought one thread could be for posting that we have made a donation to a research study. I know I will be giving to more than one researcher. Just a thought. It would be encouraging to see all the donations being made.

If I were you, I would just set one up. I doubt the moderators would reject.

 

[Kati]

Wondering if it would be helpful to have a thread solely for posting that we have just made a donation to a research project. This could remind us all if we are able, to make a donation. Like others I think we have to move research along ourselves until we get something significant in the findings - enough to get the big dollars from government.

I thought one thread could be for posting that we have made a donation to a research study. I know I will be giving to more than one researcher. Just a thought. It would be encouraging to see all the donations being made.

It would also be helpful to be inspired by fundraising efforts, from grassroot to bigger campaigns. I know fundraising is more developped in the UK. What can we do, within our constraints?

 

[rosie26]

It would also be helpful to be inspired by fundraising efforts, from grassroot to bigger campaigns. I know fundraising is more developped in the UK. What can we do, within our constraints?

I don't know the answer to inspiring sufferers to donate except that I know for myself that donating is one thing that I can do and am inspired to do because it's the quickest ticket to answers and treatment that I can see. We could spare years of extra suffering if we really push and give to research as each of our circumstances allow.

 

[Kati]

I don't know the answer to inspiring sufferers to donate except that I know for myself that donating is one thing that I can do and am inspired to do because it's the quickest ticket to answers and treatment that I can see. We could spare years of extra suffering if we really push and give to research as each of our circumstances allow.

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?

 

[rosie26]

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?

We fundraise the best way we can, if we can, where we can. We support those who can get things started if we can. We support those with good ideas for fundraising if we can.

I have no savings and live week by week - precariously a lot of the time. I'm desperate also to find answers.