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

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
And how much in your estimation does every phoenix rising member need to donate to meet the required funds needed?

That shouldn't have to be in @actup 's estimation. Any of us can estimate that once we know how many users there are on Phoenix Rising...

I did do the calculation at one point that we could easily fund this if everyone worldwide who KNEW they had ME (which is only 20%) donated $1. But someone else told me (rightly) that saying things like that makes people go "I can donate a dollar and then I've done my bit!"

LOL, not all the PWME in the world will see that message and not all of them are in a position to donate; so if you really want to make it happen we DO have to aim a little bit higher.

Again, within our means, whatever that is. Sometimes all we can do is help promote a project we believe in, and that work is also valuable.

-J
 
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aimossy

Senior Member
Messages
1,106
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.

It has been ages - or feels like it. CII were aiming to try and give an update to the MDP team every Fri, but that day is always low on traffic, so it was changed to the start of the week. CII have to fit this in on top of their ususal work schedules, the next one is a bit late because staff were away. I can assure folks that the tracker definitely gets updated as soon as MDP know the new totals. There is no way MDP could do a live feed. They will start sharing on social media the total number of views the study blog and study page on the website has had. The shares are needed to get these views up, if people don't read or hear about it - they won't know donations are needed. The numbers of donations coming in since the information about the study came out is actually good going at this early stage. http://microbediscovery.org/
 
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Tuha

Senior Member
Messages
638
@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?

I cooperated on 2 crowdfunding campaigns for ME research (OMF, Lipkin). I am lazy now to check the exact numbers but I will tell you what I remember and it will not be far away from the reality.

For each study we got around 2 mil. USD, there were always around 1 500 donations but many patients donated several times so we can count that there were only few hundred donors (I would say around 500). The donations were very different from 1 USD to 1 mil. USD. The average donation was around 150 USD. It´s often that many small donations will often bring few big donations. So you can see that a really small amount of patients are able to fund a big important study. I think 10 000 patients who would regulary donate to ME research could do really a big different.

I think what is absolutly important here to spread the world about, to talk a lot about these studies, to share the articles on facebook/ forums, to talk in your ME community about the importance of supporting research, to ask your family/friends to donate, to do some events and so on - there are many possibilities. I will just tell you an example. Some days ago I talked in our national facebook group about the importance to support ME research. We are just a small group of 100 patients. There were not too much responses but I know that 3 more people will try to support ME research regulary and 2-3 said that they would like but they have financial problems (so maybe they can donate occasionaly). These patients have never donated to ME research. And why? For the majority they simply didnt think about and this is probably the main problem - the patients dont think about and this we can change only with advertising, promoting ME research and encouraging the others to donate.

So here we can try to do multiplication effect. If everyone will bring another person to donate we can soon increase our research money significantly. So just talk and spread the word everywhere and motivate the others. Btw, I know that OMF after the fundraising campaign got some big donors who promised to give more money in the future (I think some of them already did it). with Lipkin, I think it will be similar so those 5 mil. doesnt look unrealistic - just everyone has to do more effort.
 

Tuha

Senior Member
Messages
638
Regarding to what was said I would propose you 1 thing. Many of you are members of national ME groups, support groups, facebook groups,.... Try to talk there about the importance of patients financial support of ME research. How I said many patients even dont think about this possibility and they dont know where to donate.
Feel free to use my numbers which I mentioned in the post above.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Regarding to what was said I would propose you 1 thing. Many of you are members of national ME groups, support groups, facebook groups,.... Try to talk there about the importance of patients financial support of ME research. How I said many patients even dont think about this possibility and they dont know where to donate.
Feel free to use my numbers which I mentioned in the post above.

Already doing it a lot!!! #MEAction posted an article about that, tweeted about it, and then several days later, did a second round of social media promotion. We're trying to get the word out.

-J
 

Tuha

Senior Member
Messages
638
Already doing it a lot!!! #MEAction posted an article about that, tweeted about it, and then several days later, did a second round of social media promotion. We're trying to get the word out.

-J

Great Jamie, I saw a lot of MEAction posts and I think it does a lot of good job for ME research advertising.
But maybe we could try one more thing. I think many patients still dont fully understand the importance of the personal financial involvement. They read the articles, they think it´s great that there is ME research but they dont think that they should donate or they think that their small donation will not help.

How I said in my post above 500 patients were able to fund ME research for 2 milions. Imagine if there would be 10 000 patients involved. We could get every year maybe 20 millions for ME research. If you like maybe it can be a good idea for MEAction to write an article to try to show the patients their personal importance in this subject.

I will post it here once more what I wrote above because these numbers explain very good the problem and why is all patients participation necessary. I think someone with better english could write a nice article about this and maybe we could get more patients who will regulary donate to ME research.

"For each study (OMF, Lipkin) we got around 2 mil. USD, there were always around 1 500 donations but many patients donated several times so we can count that there were only few hundred donors (I would say around 500). The donations were very different from 1 USD to 1 mil. USD. The average donation was around 150 USD. It´s often that many small donations will often bring few big donors. So you can see that a really small amount of patients are able to fund a big important study. I think 10 000 patients who would regulary donate to ME research could do really a big different."
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
How I said in my post above 500 patients were able to fund ME research for 2 milions. Imagine if there would be 10 000 patients involved. We could get every year maybe 20 millions for ME research. If you like maybe it can be a good idea for MEAction to write an article to try to show the patients their personal importance in this subject.

If you have an idea for an article, you should articulate your argument and submit it to meaction.net/submit

I will ensure it looks good. :redface:

In advocacy, we hear a lot of 'it would be great if someone were to...' Just like in science fundraising. ;)

If you're planning on writing an article that is basically about how we really can fund big projects if we all work together, I think it would be best as an opinion piece. If you want to write something more specific about this particular project, it would probably be an action, to get people to donate to this particular study.

-J
 

Tuha

Senior Member
Messages
638
If you have an idea for an article, you should articulate your argument and submit it to meaction.net/submit

I will ensure it looks good. :redface:

In advocacy, we hear a lot of 'it would be great if someone were to...' Just like in science fundraising. ;)

If you're planning on writing an article that is basically about how we really can fund big projects if we all work together, I think it would be best as an opinion piece. If you want to write something more specific about this particular project, it would probably be an action, to get people to donate to this particular study.

-J

you are right Jaime - I will try to write something. Just for my defense I always struggle with my english :), but you are right, few people cannot do everything.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Hey, everyone! We are starting a big project at #MEAction: to hire a PR firm for #MillionsMissing!

Though this is a general fundraiser, the first $9,000 we raise will all go to public relations. That's why I chose $9,000 as my own, personal fundraising goal in Crowdrise: so that we can hire the PR firm we so desperately need in order to paint a more accurate picture of our illness in the minds of the public -- a group that includes our physicians, who are swayed by popular representations of ME in the media no matter how well-educated they are in the classroom (which is still not very well, and we're working on that, too.)

While our fundraising campaign as a whole is about raising money for local protest sites and #MEAction in general, this is the part of our quest I have chosen to focus on: promoting better coverage and crafting press releases that can help shape the public perception of the protests and the illness, and get the word out that ME is debilitating, neurological, and can happen to anyone. We may not be able to unmake the personality-based pseudoscience put out there in the past, but we can work together to ensure that newer articles have the facts straight.

Any funds we raise after that will go to funding #MEAction and the #MillionsMissing local protest budgets in a 2:1 ratio, up to $2,000 for each protest site.

Please consider reading more and donating here. There is yet more information here.

Best of all, if you would like to help out, you can join our fundraising team and set a goal, too.
 

A.B.

Senior Member
Messages
3,780
Wow - a pro-XMRV comment. Didn't know anyone was still making them. tbh, when critics are so clearly misguided that must be a good thing!

Report the comment as inapproriate (no registration needed, just click the button on the bottom right of the comment). We have a good research program taking shape and don't need emotional rants based on pet theories.
 

aimossy

Senior Member
Messages
1,106
Wow - a pro-XMRV comment. Didn't know anyone was still making them. tbh, when critics are so clearly misguided that must be a good thing!
To new people or people not knowledgeable with science - it makes them doubt, but I hope your right! Sad to have a comment like that straight out of the bat.
 
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aimossy

Senior Member
Messages
1,106
Report the comment as inapproriate (no registration needed, just click the button on the bottom right of the comment). We have a good research program taking shape and don't need emotional rants based on pet theories.
Does it need a few people reporting the comment?
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Best of all, if you would like to help out, you can join our fundraising team and set a goal, too.

I'm really impressed with how many have joined the fundraising team to raise $$$ for a PR firm. This is the kind of work we need: a way of amplifying our voice. There is a new ME association in South Africa who is doing a #MillionsMissing protest this time around and have joined on as a fundraising partner, but individuals can do it as well.

Instructions attached.
 

Attachments

  • Become a Fundraising Partner.pdf
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