Donations for Advocacy or Research - What is Your Preference?

I think both are important and needed to leverage more substantial funding from public or private funders.

We can’t wait for research breakthroughs to overthrow the current status quo in how people with ME are dealt with. We need to get to a position where ME patients are not at risk of harm from the approach taken by GPs psychologists physios OTs etc. That doesn’t need research it needs a change in policy guidance and training So ongoing advocacy for that is needed until tangible changes are implemented and beyond (to monitor effectiveness).

Advocacy is also needed to make the case to funders and indeed to the ME community itself that we need to keep putting money into research. It’s because of patients cash that we have the U.K. ME Biobank. Research does seem to be relatively low priority for some people with ME who’s focus is symptoms and illusive ‘treatments’ I’m not criticising people for this it is understandable in a vacuum that people are scrabbling around for something that might possibly help. But at the same time if the money that the likes of LP have been sucking out of the community was going into research instead we could have made progress by now. ME organisations and researchers have a role to play in engaging with and educating the community about research. This is why Decode ME makes me hopeful.

rambling thoughts from me

i also support an ME organisation through membership and donations

And I contribute to DT crowdfunding as he is shining a spotlight onto the murky foundations of the status quo

I go for what I think is the most effective spend at any time - which has changed quite a bit over the last 5 years as I have learned more about the world of ME.