1. Guest, the 'News in Brief' for the week beginning 27th July 2020 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice
  3. Guest, the DecodeME study has announced £3.2m of funding, click here to read about it.
    Dismiss Notice

Donations for Advocacy or Research - What is Your Preference?

Discussion in 'General Advocacy Discussions' started by andypants, Aug 1, 2020 at 7:25 PM.

  1. andypants

    andypants Senior Member (Voting Rights)

    Messages:
    1,234
    Likes Received:
    10,906
    Location:
    Norway
    I donate a monthly sum to the national ME Association and/or their research fund. Every now and then I additionally support other fundraising schemes that I deem worthwhile.

    Until recently my monthly donations have been modest and I have felt it was necessary to direct them towards either research OR advocacy. My financial situation is now more stable and so I'm able to increase my contributions. I'm now torn between splitting the sum between the two, or deciding on putting maximum effort behind one of them.

    Research is our only hope of ever getting out of this hell, and I also believe it is important to show potential and future researchers that there is funding available in this field. However advocacy can be our route to better help and services in the short term, increasing QoL for the patient population and potentially make fundraising from the general population and/or our governments more easily accessible.


    Who do you (or would if you could) donate to, and why?
     
  2. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    5,336
    Likes Received:
    35,153
    Location:
    UK West Midlands
    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.
     
    Last edited: Aug 2, 2020 at 12:07 AM
  3. Andy

    Andy Committee Member & Outreach

    Messages:
    10,011
    Likes Received:
    72,889
    Location:
    Hampshire, UK
    I donate to both research and advocacy for the reasons that you give already. Donating towards any research effort, to my mind nowadays, is more about supporting that research team than necessarily about the particular project, while donating towards advocacy is becoming more important for me - when it can be so hard due to ME to represent ourselves it's vital to support those people who you think do a good, or at least good enough, job of it.

    Bottom line, to anybody, is if you can comfortably afford it, donate something to someone trying to improve the lives of all of us. And, if possible, make it a regular payment.
     

Share This Page