Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 15, 2013.
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Some nice ideas there. It's good to show people an entire range of ways how they could organize their giving.
Thanks, Eric - I don't think a single approach is likely to work for everyone and so a menu to choose from might be helpful!
I'm curious about how other people decide how much to give: fixed sum, some sort of rule, etc.
I think it's quite a complex and individual question!
I dont have a strategy. I do it several times a year if I see a good initiativ or project. For me is also motivating if i can see that also the others are donating and that it´s worth to do it
Hi Tuha - I agree, it's much more motivating if you can see that other people are also donating. In British society, at least, it used to be the done thing that you didn't 'boast' about giving to charity but a while back I read some research showing that people are much more likely to give if they see others giving so now, if I donate to an ME charity, I post about it. I think it's important to try to establish it as the norm.
The amount, on the other hand, can't really be a norm when our community is so sick and so many are unable to earn. But I think it's important for each of us to give if we can, even if it's just that $5 a year - small things done regularly add up!
I got sick at 15 and can't work at all so I have 0 dollars. Plus as far as CFS how are we supposed to know where to give? It seems all spread out and if we want valuable research to be done how will it help if we're all giving to diff. places? I think we need to be unified in our giving. My thoughts.
I'm sorry you got sick so young. It must be especially frustrating for you to see research going as slowly as it has. Like I said, I'm not suggesting for a moment that anyone who is broke or strapped for cash should donate: that's for people who can spare a bit, even if it's not much.
That's an interesting point on whether we should be all directing our money to one thing. The Open Medicine Institute recently had a conference with leading figures in the ME research world and came up with a list of priority projects that they want funding, and are inviting donations. In an ideal world, I'd like to see our research charities coming together to funnel money towards priority projects: but a lot of them seem to get a lot of success by providing seed money that more broad-based charities or government bodies then step in a support so maybe that's more efficient.
Very interesting point, and I don't know the answer...
Somebody who is not a member tried, and failed, to make a comment. Here's her comment:
I think there are 2 important points to make when talking about 'to give or not to give':
1. It is not just for ourselves but for all the youngsters who miss out on so much - when I was first ill I felt guilty about donating or asking friends and family to donate to ME charities as it seemed like asking for something for myself, until I realised this.
2. If we and our friends and families do not give, then who will? ME with all the bad press is not a popular cause like cancer and heart research etc so Joe Public is not likely to favour it.
Those are really good points and I agree completely with both of them.
I also used to feel guilty about donating to 'my own illness'. Where I live, I routinely pass people out collecting for charity and it's very, very rare that I give them anything. I give all my charity budget to ME research, because of that second point: if we don't donate to our own illness, who will?
Other charities have all sorts of means of pulling in money that we don't. The stuff I don't want that I can't sell goes to charity shops, for example, but there aren't any ME ones. And until we get some better press, it will be hard to get money from the public.
On the other hand, I think there's a big untapped resource of people with ME and their families and friends who aren't currently aware that ME biomedical research even goes on, let alone that there are charities that they can donate to and fundraise for. If you get a CFS diagnosis in the UK, and rely on the information from your GP, you won't have a clue about all this. Whereas if you get a cancer diagnosis, you'll probably see a TV ad a day for Macmillan or Cancer Research UK.
There's a lot of potential there. If we can start to get study results coming out that support our case for having a biomedical disease in an obvious way (that don't need a literature review to back them up), we'll very quickly be in a virtuous spiral. That's why things like getting the FDA to let us have Ampligen and the Rituximab work and the Lipkin study are so important. Any one of those things could be a gamechanger.
Meanwhile, it's up to us to do what we can to get studies funded...
I think what would help is also a big campaign between the patients and ME organisations. Regarding our forces and possibilities - I would chose 3 small research project with maximum amount of 100 000 USD for each project (maybe 1 on each continent - America, Europe, Australia to et worldvide interest) and then 1 big project like maybe OMI or Norwegian Rituximab study. If a study would get that amount of money we would chose another one - so there would be neverending fundraising campaign - it would be goodto see each 1-2 weaks the results how moch money were donated what can motivated also the patients who are sceptical on the beginning.
I think what is also important that these discussions often finish with complaining that ME patients are poor and they cannot donate. I think we should stop these discussions. Noone is excepting that the poorest ones will donate - I think the others will be happy to do it for them. But there are simply also a lot of ME patients who are rich (they got sick later and they were succesfully working all they life, they can have rich families, friends and so on). Today I red that 1 patients gave 100 000 to OMI and also OMI has pledge of 1,7 mil. USD for their research projects from som donors. So let´s go to talk how it´s possible, create some fundraising projects and not to talk how it´s not possible
I think you have some good ideas, but people do get tired of constant fundraising, so there might be an issue with that.
I do not agree with what I bolded. Some people have very bad brain fog, and perhaps feel obligated to donate due to pleas and peer pressure, so I don't see anything wrong with saying DO NOT donate if you are not financially secure.
Hi GG - I take Tuha's meaning to be that rather than focus on why it's not possible for some people to donate (which is perfectly acceptable and understandable!) and/or take part in fundraising, let's try to find ways to get more people involved, let's try to find ways to be more effective and possibly find new sources of funds.
The best thing you can do, rather than donate a few paltry dollars to a multi-billion dollar research complex, is keep ME/CFS in the public eye. People posting to this website and continuing to be gadflies will do more than sending $10 to this or that lab studying some specific virus or fungus. Science does not work that way. There is no way we could ever give enough to keep cutting-edge research "funded". It's a pipe dream. The huge institutions, that might take up interest in CFS, have their own multi-million/billion endowments. They are looking for groups advocating for certain diseases. Not for jars full of pennies to study a particular alledged pathogen. Save your money.
Cort wrote a letter to Dr. Unger, the CDC head, outlining a series of focus areas for research. So the big-wig docs, institutions know where to start, if they are interested. What are the usual co-morbid conditions? How do they associate with CFS? Why do women tend to have reproductive issues, which can cause life-long excruciating pain. Plus other key, critical areas of interest. There were many important ones. Dr. Unger is a brilliant woman, who seems to have very obtuse judgement and observation. A person can do brilliantly in university, med school, and still not be curious about the unknown. Anyway, I digress on the "giving" issue...
Hi MishMash - I don't think donating and raising awareness are either/or. There's no reason why we can't do both. And we're not donating to a 'multi-billion dollar research complex' - we're donating to ME research charities who are directly funding important and worthwhile studies. There are so many examples of patient-funded research moving us forward, using small amounts of seed money (raised from patients and their supporters) to pull in much bigger grants. The Simmaron/PHANU study is just the latest example - they raised $225k for a pilot study and it pulled in an additional $800k from another foundation.
I agree that we alone can't afford the billions to keep cutting-edge research funded but that's not our aim. Our aim is to get enough good studies done to get some immediate treatment benefits, find biomarkers, and provide enough of a research base to get the attention of exactly the large institutions that you're talking about.
We've all seen how difficult it is for advocacy (I'm assuming that's what you mean by 'being gadflies') to get traction. Advocacy on its own won't do it. We also need research to back us up and pull other researchers in. We need both advocacy and fundraising and yes, that ten bucks.
I'm not sure what sort of institutions you're talking about here but universities, although they have endowments that support their infrastructure, need to pull in research grants in order to do research. A lot of labs have a certain amount of minor slosh money - leftover bits and pieces of old grants - that they can use to do small projects quickly, like many did when the XMRV story broke, but for big, serious projects they need external funding.
Now that government funding of research has decreased over the years, many research funders won't fund entire projects but will join in with other funders so that they can each claim some credit for the study. That's one of the reasons why our ME research charities have done so well with the relatively small amounts of money at their disposal - they've been able to provide funding that other funding bodies are then prepared to add to.
"and then 1 big project like maybe OMI or Norwegian Rituximab study. If a study would get that amount of money we would chose another one – so there would be neverending fundraising campaign – it would be goodto see each 1-2 weaks the results how moch money were donated what can motivated also the patients who are sceptical on the beginning.'
I have an idea for PR along those lines which I'd love those who run this site to think over. I think it would be great if PR can pick one big scientific project which needs fundraising eg Norwegian Rituximab or whatever most would see a very worthy fundraising for research cause and then set up an easy on the eye thing which shows the climb up to meet the fundraising achievement.
My local town had a big sign on the front of our post office years ago for a fundraising effort (very important to be highly visible) in which as more money got raised, it climbed up and up, heading up more and more towards the big goal. This was very inspiring for people to donate to the cause.
My thought is that as fundraising orgs usually keep 9-18% (if you look at any of the big fundraising orgs) for advocacy to help gain more funds (some of them are actually keeping up to 25% of what they raise.. I think thou that is far too high). PR itself could keep a percentage raised (to go towards the site costs and to further causes such as this). With doing that.. PR helping fundraising effort for a good cause.. shouldnt then be taking away the normal donations at all which it relies on to keep this site running. It would be a win win situation I think for both PR and for fundraising one of our very needed scientific research projects.
Read Pubmed. Check out the hundreds of new studies that come out each month, each week. Where do they get their funding? Plus, who is going to pick the winners and losers? What if we poured our meager pennies into "reducing viral loads" because it happened to be the treatment du jour? Are we going to have science by crowd consensus? Maybe we should take a poll and give whichever scientist is most popular on PR all the money. The Rituximab study is a perfect example of what I'm talking about. Would any patients have considered funding two scientists looking into B cells? Whatever successful treatment we ever get is going to come completely out of the blue, and it will be surprise to all of us. That is the way scientific discovery works.
Very interesting idea there Tania. We're in the process of setting up some new arrangements for how Phoenix Rising can support and publicise the fundraising efforts of other ME/CFS organisations, and your suggestion is a very good slant on this. We have looked at some 'thermometer' style graphics in relation to our own fundraising, and I like the idea of us running a fundraising appeal for a specific project. Perhaps we could hold a forum poll every 6 months or so, to let members choose which fundraising campaign we should support in this way. I really like this idea, and I'll certainly be backing it, so hopefully we will set up something like this soon.
While I'm on, I hope Sasha won't mind me taking the opportunity to plug a nice free way to raise significant money for Phoenix Rising: our Amazon shops, where 4-8% of what you buy on Amazon goes to Phoenix Rising! Simply bookmark one of these links, and use it whenever you navigate to Amazon - and without costing you a cent/penny you can help keep Phoenix Rising running.
Phoenix Rising’s US Amazon Store
Phoenix Rising’s UK Amazon Store
Phoenix Rising’s Canadian Amazon Store
Phoenix Rising’s Deutsches Amazon Speichern
Phoenix Rising Française Amazon Store
Phoenix Rising Españoles Amazon Store
Whatever about in the US, I don't think this an accurate summary of how things work outside the US. There aren't lots of multi-million/billion endowments or multi-billion dollar research complexes.
If people want a variety of research in the field, private money is probably especially important. Research bodies only fund a fraction of submitted studies - other researchers will leave the field if they don't get money. Also, researchers often need money to do seed studies before they can get bigger grants, to show there is something to their theories.
Governments will likely continue to fund quite a lot of psychobabble; ME/CFS charity money almost universally doesn't go there.
There are millions of people affected with this illness. We can influence things in various ways - why narrow them down unnecessarily. A lot of people giving a little can add up to a lot.
Hi MishMash - funding sources vary. For established diseases such as hypertension, they already have drug companies interested in their disease and a lot of the studies are pharma-funded. Some, often larger, higher-quality, higher-impact studies are funded by government, and some are funded by charities. It depends partly on what stage a disease is at in terms of its recognition. In the early days of MS research, when MS wasn't well-recognised or understood, studies were being funded by patients and their supporters because nobody else was funding them. Once the patients had got the wagon rolling and the potential pay-offs could be seen by pharma, governments, and the public, those other funding sources came online.
That's an interesting point about how we can most efficiently donate, which Tania and Mark have been discussing on this thread.
I agree that science often progresses initially through serendiptous findings, which is how we got interested in Rituximab. What we need to do now is fund the follow-up studies because that's also how science works: chance finding and confirmation in rigorous study. We're not all getting treated with Rituximab right now because there haven't yet been the follow-up studies.
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