Donate to the £55k fundraiser for a UK #MEAction organiser!

I think that intellectually it's best for us to be honest and aware of how much uncertainty there is around ME/CFS, but the problem is that it's difficult to motivate people to campaign on 'uncertainty', which can push advocacy groups to take positions which are then difficult to defend.

If we just have a tiny number of patients who are wrongly certain about something, and outraged by the justified of uncertainty of others, that can make successful advocacy much more difficult.

I think that us humans can like to imagine we know more than we do, and fall into flitting between different unsupported beliefs rather than accepting how ignorant we are, and that might be one reason why many in medicine like the way PACE provided them with things they could confidently assert were 'evidence based' treatments.

Maybe we could try to convert widespread patient concerns about PACE to a movement that pushed for greater honesty about medical ignorance and uncertainty? Such an approach would have to be carefully done to ensure it was not something that could be co-opted by Wessely & co.

Actually, I doubt it would work.

IMO: hammering PACE and all the problems around it is still the area of advocacy likely to do the most good. Try to use that to push for wider reforms in how UK science and medicine engages with evidence, patients, and external critics - hopfully that will lead to improvements in the long-run.

I guess that politicians will often have to make decisions which lead to peoples death in one way or another. Rare examples of deaths aren't normally enough to change policy unless there's a really quick and easy fix. It could still be worth mentioning an example of the most extreme cases.

Thanks - oops.

 

Good point Trish,

Do we know the method that this trickles down into brain cancer research from the Govt?

(and a p.s. to my original post

I think it would be easier to raise funds for a MEAction UK organiser if we knew of a clear plan of action that had an end result in one campaigning area which was feasible - then people would see something they wanted and would happily pay for it)

 

I think it’s far from certain that lobbying any time soon would lead to ring-fenced funding in the U.K. There are hundreds of major conditions and thousands of rarer ones and most don’t have ring-fenced funding. So I don’t think our eggs should all be put in that basket. So I dislike a strategy to discourage people to donate to research, particularly any that suggests such money will never make a difference.

If one thinks of all the 100,000+ patients who have hundreds of thousands of close relatives, the percentage of their disposable income that goes to research is tiny.

Any suggestion that it is governments' responsibility to fund all research, and the community itself should wash its hands of feeling responsibility to fund research, is a dangerous idea and I think should not be promoted.

 

Now at £6,116, 11%
https://www.meaction.net/grow-our-uk-team/

 

*We definitely don’t have a strategy to discourage people from donating to research*. This is slightly out of context from a discussion that #MEAction volunteers were having between ourselves about this:

There are reasons to believe this may not be as great an effect in UK but there probably is a similar phenomena in every country with an elected government. I wonder if anyone could find UK evidence on this? So far we’ve drawn a blank.

So the strategy we were discussing was how to communicate that donating to advocacy isn’t separate from donating to research. If the end result you want is more research, one strand of getting that is to donate to advocacy orgs, who then lobby government and relevant bodies for more research.

One of the MPs recently said when asking for the debate that ME has a PR problem. That probably won’t suddenly transform without an advocacy org putting in the legwork. People like Sarah Reed (#MEAction volunteer) have been putting in a lot of behind the scenes effort into parliamentary stuff. We really need a full time paid worker who can coordinate everything and have a sense of strategy.

Are you sure?!

Yes this can be a big problem especially somewhere like Twitter. The great thing about Twitter is everyone can express their opinions. The worst thing about Twitter is everyone can express their opinions

 

To me, advocacy broadens the amount of people who become interested in the illness. That in turn leads to more funding down the line. It’s possible that this leads to a much more significant uptick in research funds down the line, but I don’t really have anything to substantiate that, it’s just a hunch.

 

I would agree with that.
The problem was not of our own creating and it doesn't help when we have to go up against the machine of the SMC.

Has any thought been put into hiring a PR agency ? Now that the SMC seems to have got the boot form CMRC maybe there is an opportunity to get a different message out.

I think we have to forget about twitter because there are too many individuals only interested in getting their point across, whether it's definitions, classifications, symptoms, virus theories...whatever, there is no structured approach so it's pointless to try.
It's also probably pointless to complain about it because that is twitter.

I am all for more funding for advocacy but I think it would help to understand tangible goals and results.

 

£6,379, 12%
https://www.meaction.net/grow-our-uk-team/

 

Just wondering, is there a reason there is a specific fundraiser for a UK organiser?

Could this not be funded from a central MEAction fund or a general fundraiser?

The reason I ask is, it is likely only UK patients will donate to this, yet from what I gather the UK already is on a par with the US in terms of general contributions or donations.
(I base this on comments by Jen relating to the Unrest campaign )

Even if I have misunderstood this,
Would it be better to have one general fundraiser with details of how the money is spent ?

 

From the link

it might answer your questions?

 

That's a great response I think especially given there wasn't much time to spread the message. Well done to all involved:

 

Nice infographic:

 

Now at £6,754, 12% of target.
https://www.meaction.net/grow-our-uk-team/

 

Now at £8,193, 14% of target.
https://www.meaction.net/grow-our-uk-team/

 

Now at £10,506, 19% of target.
https://www.meaction.net/grow-our-uk-team/

 

Now at £12,524, 22% of target.
https://www.meaction.net/grow-our-uk-team/

 

Jeez it's slow!!!

 

Thankfully it's ticking along though.

Jenny's reference above (the $1K leads to $25K number) is really powerful, and I hope that persuades a few more people to donate.