To Give Or Not To Give...and How Much?

by Sasha

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Photo Courtesy of Tax Credits[/caption]
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!

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

 

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.

 

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.

 

"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

 

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

 

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

 

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.

• 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
  

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.

 

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.

 

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/

 

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

 

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

 

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

 

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.

 

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.

 

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!

 

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.

 

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.