Donating and fundraising by people with ME/CFS - discussion thread

What do you mean by 'necessarily'? I mean obviously it will not scale necessarily.

The point is that we are very far from whatever the saturation point will be for what can maximally and safely be achieved through fundraising by patients and their loved ones.

Furthermore, charities most often can't go for bigger fish without smaller scale funding, because someone has to pay for the bigger fish fundraising done by charities. People always seem to forget that.

Large donors usually start as small donors, also large donors usually only donate when there are a lot of small donations (community trust),etc... (That's what the real and actual data says.)

There is a very uneven playing field, but citing the uneven playing field constantly leads to a self-fulfilling prophecy. One way of many to even out the playing field is peer to peer fundraising.

Let me say this again, people underestimate how extremely (!) difficult and expensive it is for a charity to get a 50 bucks donation, let alone by someone not affected or by someone not knowing someone affected. That's not only the case for ME charities. Overhead is usually between 30-50% of revenue.

Peer to peer fundraising is like a 'cheat code'. If you make a gofundme (takes 5 min) and you get 'only' said 50 bucks, that's a HUGE win. 10 bucks would be HUGE, too.

In a very real sense pessimism about 'what difference will my action X make' is our greatest enemy. If you get even one person to donate for ME who otherwise wouldn't have, you've made a big difference. The more patients realize this, the better the outcome will necessarily be. Institutions are crumbling before our eyes. We need to get more active collectively. Nobody will ride in to save us.

Change for us will come from understanding this—or not at all, I believe.

 

Regarding relatives:

In the group I have helped run for the last 29 years, quite a number of parents (of children and adults) and to a lesser extent adult siblings have had standing orders to our research fund. Often the patient has also had a standing order and I know in some cases the patients specifically promoted the idea to their relative.

Not sure I recall any (adult) children setting up standing order for research but some have done fundraisers.

Edited to add: the standing orders of relatives are often larger than that of the patient.

 

Regarding the argument that it’s a government’s job to pay for the necessary research, it’s one of the reasons people pay taxes:

The figures seem to show a different picture. Governments take lots of taxes off people but only a tiny fraction of that is for medical research.

I have mentioned before on the forum that the budget for the health research body in my country is €46 million. That is clearly not enough to make rapid progress for the thousands of conditions. Most won’t get any funding in a particular year. The government clearly can’t be relied upon to fund the wanted research with a budget like that.

But another way of looking at it is to compare it to the total tax take: a figure that has been mentioned recently here is €110 billion or €110,000 million.

If one rounds the €46 million figure to €50 million as there will be some inflation, that means that 1/2200 of the tax income (€1 per €2200) goes for medical research. People pay lots of taxes but it mainly goes on things like social security payments of various sorts, non-research health expenditure, education, roads and infrastructure, military, housing, policing and the justice system, etc.

The exact fraction varies by country but from what I’ve seen the medical research budget is a very small part of government expenditure (an exception may be the US where there is less of a focus on helping everyone in society with universal health care and other government spending).

It’s not nice to think about: I would much prefer to be able to sit back and think it’s a government’s job to pay for the necessary research. But it doesn’t seem to be based on the figures.