To Give Or Not To Give…and How Much?

January 15, 2013

by Sasha

Money Jar

Photo Courtesy of Tax Credits

If any of us was Bill Gates, we wouldn’t ask ourselves whether we should donate money to ME charities. We’d just do it. We’d reach into our gigantic bank account and drop our billions on the problem, secure in the knowledge that we were pouring such shedloads – no, planetloads – of cash onto it that the problem would be solved.

We’re not Bill Gates. So, should we bother giving if we can’t give billions?

 

In his book, ‘How to Change the World’, John-Paul Flintoff says that we tend to think that when big things happen, it’s because one person did something big, but in reality, it’s usually lots of individuals making small contributions. It’s well worth each of us making even small donations, because we’re among thousands doing the same thing. It’s also important to tell others what we’re doing so that they don’t feel like suckers if they give and so that we make donating to our charities a social norm. By telling people about your giving, you multiply it.

So if you’re not in debt or really struggling to afford the basics, it would be a good idea to donate. But how much? As people who are chronically sick, we’re probably going to be a bit more cautious with our money than most but if we pick a strategy that suits us, we’ll be more likely to give and to feel comfortable doing it. And it needn’t be the same strategy forever: pick something that suits you for now, and if it doesn’t later, change it.

Here are a few approaches to choosing how much to give:

1. A fixed percentage of…

…something. UK Charities Minister, Nick Hurd, suggests giving 1% of your income to charity. Some religions suggest 10% and Bill Gates (who we are not) gives 50%. Clearly, there’s no agreed standard and it’s a question of what feels right for you. But it needn’t be a percentage of your income. It could be 1% of what you spend on treatments for your ME or 10% of what you spend on posh coffee. Your choice, but first have a go on the ‘How Rich Am I?’ calculator, which uses your income to work out where you stand among the world’s richest and where you would stand if you donated 10% of your income. Quite an eye-opener.

http://www.givingwhatwecan.org/why-give/how-rich-am-i

2. A flat sum

Saves getting the calculator out, and easier to weigh up in you mind in terms of whether you can afford it. $500 a year? Great. $50 a year? Great. $5? Great, seriously. If the 1 million people in the US with ME gave $5 each, we’d have $5 million. If all you can afford to give is $5 then give it, and tell people about it when you do because they’ll realise their $5 is worth giving too.

3. What you can save in a week

I’m pretty tight-fisted and like to think I’m frugal but, like everybody, I spend money on little luxuries and oddments, and it all mounts up. Indeed, without the occasional treat, life would be a bit of a joyless grind but doing without the unnecessary for a week is a doable and even enjoyable challenge, especially if it’s for charity, and particularly ones as deserving as ours! You could do this once or several times a year. I’m putting it in my diary for once a quarter.

4. A proportion of what you can sell

It doesn’t take long to list things on Ebay and if you know the money will go to charity, you’re more likely to make the effort and turn more of your unwanted stuff into magic cash. You can give everything you raise, or just a percentage. Some of the ME charities are registered on Ebay and you can set up your item to donate a percentage directly to them. There’s also Craigslist, Amazon Marketplace, car boot sales, yard sales and so on. If you don’t have the energy to deal with selling, you may have friends who will sell for you, for a cut. Or, if you have the energy, you could sell your friends’ things for a cut for your charity, as well as your own stuff.

So pick a strategy, or several, or try one after another. Every donation, no matter how small, gets us nearer to diagnostic markers, treatments, and a cure.

And post a comment to tell us what you’re doing!

 

Support Phoenix Rising

 

36 comments

{ 36 comments… read them below or add one }

eric_s January 16, 2013 at 12:25 pm

Some nice ideas there. It's good to show people an entire range of ways how they could organize their giving.

Sasha January 16, 2013 at 3:43 pm
eric_s

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! :)

Tuha January 16, 2013 at 7:36 pm

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

Sasha January 17, 2013 at 3:12 am
Tuha

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!

CallieAndToby January 17, 2013 at 7:27 am

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.

Sasha January 17, 2013 at 7:59 am
CallieAndToby

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…

Dolphin January 17, 2013 at 8:40 am

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.
—-

Sasha January 17, 2013 at 9:44 am
Dolphin

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…

Tuha January 17, 2013 at 5:30 pm

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

ggingues January 17, 2013 at 7:56 pm
Tuha

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.

GG

Purple January 17, 2013 at 8:40 pm

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.

MishMash January 18, 2013 at 10:17 am

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…

Sasha January 18, 2013 at 11:22 am
MishMash

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.

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.

Sasha January 18, 2013 at 11:35 am
MishMash

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.

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.

taniaaust1 January 18, 2013 at 5:12 pm

"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.

MishMash January 18, 2013 at 5:56 pm
Sasha

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..

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.

Mark January 18, 2013 at 6:09 pm
taniaaust1

"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.

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. :)

Dolphin January 18, 2013 at 7:11 pm
MishMash

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…

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.

Sasha January 19, 2013 at 2:23 am
MishMash

Read Pubmed. Check out the hundreds of new studies that come out each month, each week. Where do they get their funding?

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.

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.

That's an interesting point about how we can most efficiently donate, which Tania and Mark have been discussing on this thread.

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.

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.

Banksy January 19, 2013 at 4:17 am

i also think first money should go to advertisement of cfs so people know.

Sasha January 19, 2013 at 6:28 am
Dolphin

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.

I think it's an important point that patients funding research gives us some control over the research agenda. In established diseases where there are drug treatments, pharma companies publish a lot of trials that have seem to have been designed more for marketing than to advance clinical knowledge – statistically underpowered trials with selectively reported outcome measures, the same trial 'salami-sliced' into multiple publications that make it look like many trials and so on. And, as you say, Dolphin, governments have let ME patients down in the research that they've been funding – in fact, they've made our situation worse by pushing the psych agenda. Supporting our research charities is hugely important.

And you're right, the money really does add up. Simmaron pulled in the final $20,000 since October to fully fund its $225,000 pilot study on NK cells in spinal fluid – a crucial study – and that in turn pulled in a guaranteed $800,000 from another foundation for a full-scale follow-up.

Sasha January 19, 2013 at 6:39 am
Banksy

i also think first money should go to advertisement of cfs so people know.

Hi Banksy – a group of patients did a really big push after the Science publication of XMRV to get an ad in the Washington Post (I think). It was hugely expensive. I don't know how much it pulled in, in terms of donations – I can't remember after all this time but I expect they were fundraising for WPI. Does anyone remember?

Our difficulty is that our story is complicated and not easy to get across in an ad to a public who have been educated to dismiss us. Breakthroughs such as if the FDA approves Ampligen for CFS or if the Lipkin study comes up with something clearcut or if a Rituximab trial gets strong results would give us something to push, but it has to be worth it in terms of what we would get back.

Just did a bit of googling, here's the XMRV thing:

http://givenmeathorn.blogspot.co.uk/2010/12/xmrv-mecfs-ad-campaign.html

It was an impressive achievement to get it set up and for them to manage to fund the ad.

GcMAF Australia January 19, 2013 at 6:17 pm
taniaaust1

"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.


Hi Tan {{{{{Hugs}}}}}}
and mega -hugs
At the moment Lyme groups in Australia are getting organised.
They are looking into this awareness issue and research etc raising money and more etc
I have been meaning to post a lot here but have been busy recently with these groups.
I have spoken to relatives in adelaide (where tan is) regarding possible donations and support from a company that would have very good connections. My nephew knew about US Open champion 20011 Sam Stosur having had Lyme. So i think this helped set up a connection. By the way about 40 ppl in South Australia have now been diagnosed with Lyme. although it does not exist.
His wife is in the projects section of SA Health and so could be a very handy contact.
.
And yes a sign in the local community regarding money for CFS would be a fantastic idea. It automatically tells the community what is happening.
I want to nominate Tania for Australian of the Year- there are many catagories

GcMAF Australia January 19, 2013 at 6:18 pm

PS i could do with a bigger microscope
(just kidding)
;)

GcMAF Australia January 19, 2013 at 6:25 pm
MishMash

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.

Mish Mash
yes the H. pylori and stomach ulcers and cancer came out of the left field (somewhere in the peanut gallery/ bleachers section i think ) Currently there is a lot of things coming out that link many many diseases -(eg MS, alzheimers etc etc)
namely infection with bacteria or viruses or both
and inflammation and immune imbalance
so a treatment that works for one disease often has applications in many others

taniaaust1 January 19, 2013 at 6:53 pm
Mark

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.

That's great to hear that PR is seriously considering these things. Yes.. I do think a forum poll would be the best way to choose a ME/CFS fundraising focus which most would like to support and see more publicized and supported.

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. :)

No PR Australian Amazon store?? I dont know if its just my thought or not but I thought this site may be getting more popular with Australians over time.

Mark January 19, 2013 at 6:57 pm
taniaaust1

No PR Australian Amazon store?? I dont know if its just my thought or not but I thought this site may be getting more popular with Australians over time.

As far as we can determine, there's no such store ('amazon associates') for Australia. A shame, because you're right, we do have lots of Australian members.

taniaaust1 January 19, 2013 at 7:10 pm
Dolphin

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.

Good post Dolphin

I'd like to point out that Australia has done a lot of interesting ME/CFS studies over the years, some of them groundbreaking. We get hardly any gov money towards ME/CFS research at all (except from one of the states govs) and hence most of our ME/CFS studies have been achieved by private donations (usually to one of our trusts which support ME/CFS eg Alison Hunter Memorial Foundation or the The Judith Jane Mason and Harold Stannett Williams Memorial Foundation (which supports both ME/CFS research and Alzheimers research.. 60% goes towards ME/CFS research). The power of private donation and what it can achieve (sometimes more then what governments are doing), shouldnt be underestimated and most of the Australian studies show that.

To check out what mostly private donations can achieve.. see the Australian study list (note.. its still missing a lot of the studies).. many (or most) of the uni and other studies were funded by the private orgs above which rely on private donations. http://forums.phoenixrising.me/index.php?threads/australian-cfs-me-history-and-events.5722/

ggingues January 19, 2013 at 8:40 pm

Yes, I am impressed with some of the results out of Australia. I will likely donate to a worthy cause when I have the money and it is brought to my attention.

GG

GcMAF Australia January 20, 2013 at 9:26 pm

considering who to give too??
well there a lot of infections that may be involved
http://www.thepowerhour.com/news/mycoplasma_testing.htm
–>
|
• LYME DISEASE
• "CHRONIC LYME DISEASE" or "NEW LYME DISEASE"
• "MONTANA LYME DISEASE"
If bitten by ticks or fleas carrying Borrelia burgdorferi you can develop traditional Lyme Disease, which is self-limiting and carried by a deer tick. Our experience with patients suggests that if the tick or flea also carries co-infections, such as Babesiosis or especially Mycoplasmas, you may develop "Chronic Lyme Disease" also known as "New Lyme Disease" as well as Chronic Fatigue Syndrome, Fibromyalgia and Autoimmune Diseases.
"Montana Lyme Disease" symptoms are similar to Lyme Disease. However, it is caused by a Lyme disease-like agent that has adapted to the Rocky Mountain wood ticks found in Montana and the Western United States.
"Chronic Lyme Disease" is a combination of the pathogen:
Lyme Disease and one or more of the following Co-infections:
Spirochetes (Borrelia bacteria):
Lyme Disease caused by three types of Spirochete Borrelia bacteria:
Borrelia burgdorferi sensu stricto (USA, UK, Europe)
Borrelia garinii (UK, Europe)
Borrelia afzelii. (UK, Europe)
Relapsing Fever caused by the spirochetes:
Borrelia hermsii
Borrelia turicatae

Mycoplasmas: Mycoplasma fermentans
Mycoplasma pneumoniae
Chlamydia pneumoniae
Rickettsial Diseases:
Rocky Mountain Spotted Fever
Coxiella burnetti (Q-Fever and "Post-Q Fever Fatigue Syndrome")
Colorado Tick Fever
Eastern tick-borne Rickettsiosis
Rickettsialpox
Tularemia (rabbit fever)
Ehrlichiosis (caused by Ehrlichia, a rickettsia-like bacteria)
Anaplasmas (related to the genera Rickettsia and Ehrlichia)
Babesiosis:
Babesia microti
Babesia WA-1
Hepatitis-C

Bartonellosis:
Bartonella henselae (cat scratch fever)
Bartonella quintana (trench fever)
Viral Meningitis
• CHRONIC FATIGUE SYNDROME & FIBROMYALGIA
The top three pathogens that Chronic Fatigue Syndrome and Fibromyalgia patients on the Mycoplasma Registry
test positive for using PCR blood tests:
1. Mycoplasma fermentans (incognitus strain and various other strains)
2. Human Herpes Virus-6a (HHV-6a)
3. Chlamydia pneumoniae ("Chronic Chlamydia pneumoniae infection")
Others pathogens found:
Mycoplasmas:
Mycoplasma pneumoniae
Mycoplasma hominis
Ureaplasma urealyticum
Mycoplasma genitalium
Mycoplasma penetrans
Borrelia burgdorferi ("Chronic Lyme Disease"
may cause or trigger fibromyalgia)
Brucellosis ("Chronic Brucellosis")

Rickettsia Diseases:
Coxiella burnetii (Q-Fever and "Post-Q Fever Fatigue Syndrome") Staphylococcus
Viruses:
Epstein-Bar Virus (reactivation)
Coxsackie B Viruses(1-6)("Chronic Coxsackie Infection" may cause or trigger fibromyalgia, myalgias and other diseases.)
Parvovirus B19("Chronic Parovirus Infection" may cause or trigger fibromyalgia, arthralgia, arthritis)
Enteroviruses (causes: "Chronic inflammatory muscle disease"or fibromyalgia)
Cytomegalovirus
Borna Disease virus
Cytocidal Viruses
Hepatitis C ("Chronic Hepatitis C" may cause or trigger fibromyalgia)
* * * * * * * * * * * * * * * * * * * * * * * * *
• PERSIAN GULF WAR VETERANS
The Gulf War Mycoplasma Study showed that nearly all the Gulf War veterans who tested positive for mycoplasma infections were positive for Mycoplasma fermentans. Mycoplasma genitalium was also found and a very small percentage tested positive for Mycoplasma pneumoniae.
We recommend that all Gulf War veterans also get tested for: uranium poisoning from exposure to depleted uranium, antibodies to experimental vaccine adjuvants such as squalene, and if there has been any exposure to organophosphate pesticides or sarin nerve gas get tested for the blood enzyme, paraoxonase.
In addition, Veterans have experience long term side effects from prescription drugs such as:
pyridostigmine bromide, given to troops to protect against nerve gas, and the antimalarial drug Lariam (mefloquine).
* * * * * * * * * * * * * * * * * * * * * * * * *
• AIDS ASSOCIATED MYCOPLASMAS and VIRUSES
Mycoplasmas:
Mycoplasma penetrans
Mycoplasma pirum
Mycoplasma fermentans (incognitus strain)
Mycoplasma fermentans (various other strains)
Mycoplasma hominis
Mycoplasma genitalium
Mycoplasma pneumoniae
Ureaplasma urealyticum
Viruses:Human Immunodeficiency Virus (HIV)
Human Herpes Virus-6a (HHV-6a)
Cytomegalovirus
Herpes Simplex virus
Enterovirus

GcMAF Australia January 20, 2013 at 9:27 pm

Then maybe it is worth looking more at the treatments possible rather than the causes

Sasha January 21, 2013 at 2:47 am

The current Lipkin study is looking at a very wide range of pathogens including unknown ones on a kind of DNA hunting trip, as I understand it – now that the technology is available to test for a whole ton of things at once, it doesn't make sense to do studies looking for one pathogen at a time. He's also looking at host response to see if there's a common kind of damage.

Studies are hugely more efficient and powerful than they used to be, because of this new technology so I don't think we need to be daunted by a big list of pathogens.

cruzgirl April 13, 2013 at 3:49 pm

Is there a way to have an Amazon icon that is linked to Phoenix Rising site that you can just click from your own page. It would be much easier then having to go to this site first and then find the link. Hopeful…

I also would like us somehow to get to a stage where we are as big as Breast Cancer charity, they get so much support and they are so organized. They are everywhere. How did they do it and how can we mimic that when we are so sick. We really need a leader willing to help us. Perhaps our money that we have needs to be channeled into a director we pay who then goes forward and promotes our disease and gets the fund raising really going. This would be a big step and would need volunteers (healthy) and perhaps paid staff. Eventually the money we would make would pay everyone much like Heart and Stroke Foundation etc.

Sasha April 14, 2013 at 2:50 am
cruzgirl

Is there a way to have an Amazon icon that is linked to Phoenix Rising site that you can just click from your own page. It would be much easier then having to go to this site first and then find the link. Hopeful…

I think the team are working on this.

I also would like us somehow to get to a stage where we are as big as Breast Cancer charity, they get so much support and they are so organized. They are everywhere. How did they do it and how can we mimic that when we are so sick. We really need a leader willing to help us. Perhaps our money that we have needs to be channeled into a director we pay who then goes forward and promotes our disease and gets the fund raising really going. This would be a big step and would need volunteers (healthy) and perhaps paid staff. Eventually the money we would make would pay everyone much like Heart and Stroke Foundation etc.

This is the remit of the various countries' ME charities – they do their best, I think!

Mark April 14, 2013 at 7:54 am
cruzgirl

Is there a way to have an Amazon icon that is linked to Phoenix Rising site that you can just click from your own page. It would be much easier then having to go to this site first and then find the link. Hopeful…

You can right-click on the Amazon link on the Phoenix Rising page, 'Copy Link Location', then you can paste that address in to your browser favourite for Amazon. We do need to write some instructions on how to do that, for all the different browsers, but cruzgirl, if that explanation isn't enough to explain how to do it, perhaps somebody can write some kind of explanation here and we can then add that to the Donate page.

cruzgirl April 14, 2013 at 8:42 am

Thanks Mark, I will try and see if that works for me. I guess I would need two of those Amazon links, one for Canada Amazon and one for US Amazon. Thanks for the help.

Previous post:

Next post: