A small frustration of mine

[Julia Rachel]

Hi Frank!
Organize the Masses and you will be a super hero! Don't loose faith! We might take a lesson from our President...he mobilized his campaign via internet.....I think it is a matter of "keep trying". I did not know about this, or I would have done it! I promise to do so next round...
Best,
Julia

 

[Esther12]

I also feel asking people to give 1% of what they spend on treatments is not unreasonable.

It's been a long time since I've spent any money on treatments!

I've been genuinely broke for quite a while, but it's now looking likely that I might have some spare money for a couple of years, and was thinking about donating to ME research: I just don't know who would be a good bet. A lot of the research I read doesn't seem that great, a lot of people here seem pretty luke warm about most of the charities... it makes it too easy to be selfish and spend it all on CDs and takeaways (how I've longed for takeaways).

If this XMRV thing pans out, it looks like funding will dramatically increase anyway, so it might make sense to give to other areas of research now - but I've know idea what.

 

[_Kim_]

My 2 cents

Personally, I prefer to donate to individuals, rather than causes. It may not solve the bigger problems, but if I'm going to part with my money, I want to be sure that it is going to help someone directly.

 

[Dolphin]

Personally, I prefer to donate to individuals, rather than causes. It may not solve the bigger problems, but if I'm going to part with my money, I want to be sure that it is going to help someone directly.

I think there may be more of that in the US than other "developed" countries where there is a better safety net.

 

[Dolphin]

Good idea Frank, also a simple way would be to get some central charity organsation to maybe a make a video and have a suggestion that ME CFS patients around the world give $10 each for 1 day a year.

Part of the problem is, people are broke and also they want to believe their money is going to a 'true' cause into helping them get better.

The WPI do this, but they could be a little more vocal maybe? It's hard as they don't want to sound greedy or scare people way.

Posisbly the way for the WPI to make further money is to push more and more they are a non profit organisation?

As you said, the key is getting an organise group, and in my view - a centralised group that is well know and can be trusted by patients.

Just think how much money could be raise for research, if each person on this forum saved up $100 each, and paid that per year by Direct Debit etc.

Yes, a lot of money can be raised if you get lots of people giving, especially if they set up some system where they automatically give [we use standing orders rather than direct debits - there is a slight difference; a direct debit might be used by a utility company where the amount would vary each month (or whatever period there is) while a standing order is for a set amount and the receiver can't take more].

Most people prefer monthly rather than annual standing orders and they do tend to bring in more e.g. a lot of people would find giving $5 or $10 a month easier than $60 or $120 in one go.

 

[Dolphin]

Personally, I prefer to donate to individuals, rather than causes. It may not solve the bigger problems, but if I'm going to part with my money, I want to be sure that it is going to help someone directly.

I think there may be more of that in the US than other "developed" countries where there is a better safety net.

Also for me, this is somewhat different.

I give to research partly (or perhaps mainly?) to help myself. I want more treatment options open to me, with the hope that I might improve if not fully get better.
I also want the illness to be at the same level as other illnesses.

So, to me, giving to research is to some extent anyway, a bit like spending money on a treatment. It's something that will hopefully help me in the long run.
Of course, you end up also helping others which is a nice "side-effect".

But it is frustrating if a lot of the others don't chip in - progress is much slower.
When I got involved in Ireland, nobody was raising money for research (and it looks like that's the case in a lot of countries even now). It wasn't that everyone was poor - lots of people had money to spend on all sorts of treatments. But it was frustrating to me that people couldn't invest in research which might lead to more treatment options, as I say, as well as changing attitudes, etc.

 

[thefreeprisoner]

I was wondering who to give to for ME stuff and then I thought -- why not give to the one organisation that's helped me more than anything?

And that would have to be... Phoenix Rising. Which is sort of supporting individuals that I respect and a charitable endeavour. I don't think I would be as well as I am right now were it not for the support, fun, laughs, sound advice and major education I've received from this board. More power to the Phoenix.

Rachel xx

 

[Dolphin]

I was wondering who to give to for ME stuff and then I thought -- why not give to the one organisation that's helped me more than anything?

And that would have to be... Phoenix Rising. Which is sort of supporting individuals that I respect and a charitable endeavour. I don't think I would be as well as I am right now were it not for the support, fun, laughs, sound advice and major education I've received from this board. More power to the Phoenix.

Rachel xx

Very good. Thanks, as people giving will help it continue.

I also have given something previously.

 

[starryeyes]

I'm happy to give to Phoenix Rising and the WPI right now. :Retro smile: