Forbin
Senior Member
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Thanks - I changed it to "additional funding."They did, actually -- they funded the collection phase. It's paltry, though.
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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Thanks - I changed it to "additional funding."They did, actually -- they funded the collection phase. It's paltry, though.
And how much in your estimation does every phoenix rising member need to donate to meet the required funds needed?
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.
@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?
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
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.
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
Just for my defense I always struggle with my english , but you are right, few people cannot do everything.
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.
Looks like it's had one comment - and it is a negative rant!
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.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!
Does it need a few people reporting the comment?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.
Best of all, if you would like to help out, you can join our fundraising team and set a goal, too.