@Eric
ATM I spend money on
Electricity
Lowest tier broadband available and I use this for phone via sipgate, I dont pay for TV or mobile (I have loads of credited free sims that Virgin Mobile were giving away a few years ago)
Water
Personal food
Catfood and sundries
2 Taxi's a fortnight (1 each way) so I can go out to visit a friend
repaying credit cards (which were used to buy food, xmas stuff and the odd gadget to make life easier eg food processor)
any money I might donate would have to be cut from one of these budgets
whilst this could be done it would in the case of the obvious canditate (the cc repayments) end up costing me more than was donated, but it is possible.
Or I could kill and eat the cat netting me one free meal and a saving of about 300 a year, I could never go out saving me about 600 a year, or i could eat rubbish saving a small fortune but making me more ill. Or a combination of the above.
it's no good saying donate and others will follow, if that was the case they would have already.
what I personally need to see in order to make it worth compromising my already dodgy health by cutting my food budget etc. is a proper funding campaign for both biomedical and other nonwhacky/nonpointless research on a worldwide basis, and not just amongst pwME, so far I havent seen any evidence that anyone can even gather the funds (or agree on objectives) for the campaign let alone any actual research.
40 donated by me coupled with a few thousand other patients in the UK is good for nothing and a complete waste of everyones sacrafice, but 4 donated by several million is just about enough to at least show people are serious if not enough to actually effect decent and rapid research. It would be enough to get the ball rolling and would dwarf AFAIK western governments efforts.
but until someone can setup the initial campaign we are stuck with the ineffectual (as shown by history, I'm not tryign to be insulting or derisorary) fundraising and research efforts of individual charities.
I cant afford to waste money giving to ineffectual organisations.
the solution? I dont know but I suspect we need a billionaire with a personal incentive to fund the initial campaign, or we need a worldwide group which hasnt been infiltrated and doesnt owe any funding or favours to government/big business to coordinate it.
I dont see any.
Sorry if anyone thinks thats a selfish/negative or ungrateful attitute, I do appreciate a lot of the work which has been done but on the basis of current showing I cant see what difference it's made to pwME in the UK, the resources thrown at this are insignificant in terms of the problem and the opposition we face and my (and a few thousand others) meagre contributions wouldnt make any difference.
btw in direct answer to your question if it was worthwhile then I could probably donate 60 a year most years, find another million people who'll do the same and I will (or in terms of a smaller project i would consider donating to a charity to help people pay for tests or drugs required ie helping indivuals rather than just research, in short whilst I'm prepared to donate money if it will (or stands a good chance of IMO) make a difference, but not if IMO it wont.
thats the problem, convincing both me and a few million others that somethign will make a difference, after that gettign donations shoudl be the easy bit
Thanks four your reply. I will try to convince you, but i don't think you can claim everybody has the same attitude. I don't think it will be equally hard to convince everybody. In fact i'd say if we have to "convince" everyone we are more or less lost. But i don't think this will be the case. I am not asking people for a favor. I am trying to find a way to get us back what we have lost. I agree one has to do things in a good way and make a case, but i would expect people to be ready and willing to try to advance things. Because i don't think anyone is enjoying their current health status.
I don't think anyone should hurt their health, definitely not. This is the last thing one of us needs. So if a person really would not be able to pay for food, heating or other such necessities anymore, that person should not donate.
What i would like to know, and i've been trying to look it up yesterday, but unsuccesfully, is what the actual numbers for a UK resident are. How much do you get per month if you are unable to work? Please provide those numbers, then we can seriously talk about things.
I do agree that such a campaing would have to be organized properly. That's why i say i would like to see it done through known and respected CFS organizations.
We don't have to wait for a billionaire. Please don't take this personally, but with that attitude we are getting nowhere. We have already had enough years with too little progress. Things have to change. They have changed during the last year, but we are not there yet.
You have to please understand that if everyone had the attitude described in your post, it can't work. This is not only true for this specific enterprise, it is true for anyhting that has ever been achieved in the world. If you wait for the others to make their move until you join and everybody does it this way, nothing will happen. Is this what you want? I can't believe that's the case. So please understand we need some more willingness to do something and some more enthusiasm. And when i see how people have reacted to the WPI's XMRV finding i can see that we have plenty of the necessary energy and enthusiasm. I 100% believe it can be done, the only question is "will we do it?". In my country the say "the money was lying on the street" when someone wants to describe a situation where there was a great business opportunity. If you make the calculation of taking the number of people with ME/CFS and then multiplying that number with a modest sum, you can see that the same can be said for our health. It is there, but we have to pick it up. I can't believe that with the money we are capable of raising, as a community, this can't be pushed across the line.
It is in our hands, so everybody who wants progress should try to do his part. But, i see that not everybody is in a position to be able to do much, so please provide the numbers, so that we can make a better assessment and don't have to speculate.
By the way, what is the alternative? I don't see any. We are in this fight, against our will, because we somehow got this illness and now we have to win it. No choice. But we can win.
Look at the WPI. Those people saw that something is not right, something is missing, and they went and built what they felt was missing. This is the right attitude.
Would you say they have achieved nothing? Their research has brought some of the best people in the field into ME/CFS, they have made news all around the world and they might have found the causative agent behind ME/CFS. And there was basically only a small number of people behind that project. Some wealthy people, yes, but nevertheless, combined we are able to raise a lot more than what they have invested.
But they were determined and did it. We shoud be inspired by that and do the same. I would not call that "ineffectual research effort".
As i've said in one of the posts above, it might be a good idea not to ask people for an actual donation but to ask people to make a written pledge that will only become binding if the goal is met (in numbers of donations). Like that people could be sure they will only have to pay in the case of success.