As the holiday season approaches, I know that some of us have people in our lives who either will be asking where they can donate money to help with ME/CFS research or patient care, or who could be persuaded to do so. Given how fraught the funding landscape is, and how little regard many members of this forum have for the majority of researchers and care institutions, I thought it might perhaps be useful to have a thread where people can suggest causes and projects that they feel to be particularly worthy.
I know that Flugge and Mella's research appears, at present, to be the one (small, tiny) hope that many of us have of seeing effective treatment in our lifetime, so I'll start with that. Unfortunately, given the restrictions on payment methods and documentation, to say nothing of the slightly confused reporting of current fundraising status, this can be a tough sell for some.
What else have we got? Are there particularly worthwhile organizations not engaged in research but who provide palliative care? Who engage in advocacy or education? What is the best way to get money to SequenceME and Ponting at present? What about Lipkin's current work?
I would welcome suggestions from anywhere in the world and would be happy to add them to a list here in the original post as I am able - a quick post with a link and a short word on why this particular group/study/etc is worthwhile would be most helpful.
Apologies if this is a violation of any forum rules or if there is already an established mechanism for this that I've missed - happy to take it down if so.
2025 Year-End Fundraising
ResetME / Haukeland (Flugge & Mella) daratumumab trial Phase 2
English
Norsk
ME/CFS Research @ University of Edinburgh (Chris Ponting / SequenceME)
https://donate.ed.ac.uk/support/ME-CFSResearch
CureME (UK ME/CFS BioBank)
https://cureme.lshtm.ac.uk/index.php/1793-2/
ME/CFS Research @ La Trobe University
https://advancement.latrobe.edu.au/giving/chronicfatigue
I know that Flugge and Mella's research appears, at present, to be the one (small, tiny) hope that many of us have of seeing effective treatment in our lifetime, so I'll start with that. Unfortunately, given the restrictions on payment methods and documentation, to say nothing of the slightly confused reporting of current fundraising status, this can be a tough sell for some.
What else have we got? Are there particularly worthwhile organizations not engaged in research but who provide palliative care? Who engage in advocacy or education? What is the best way to get money to SequenceME and Ponting at present? What about Lipkin's current work?
I would welcome suggestions from anywhere in the world and would be happy to add them to a list here in the original post as I am able - a quick post with a link and a short word on why this particular group/study/etc is worthwhile would be most helpful.
Apologies if this is a violation of any forum rules or if there is already an established mechanism for this that I've missed - happy to take it down if so.
2025 Year-End Fundraising
ResetME / Haukeland (Flugge & Mella) daratumumab trial Phase 2
English
Norsk
ME/CFS Research @ University of Edinburgh (Chris Ponting / SequenceME)
https://donate.ed.ac.uk/support/ME-CFSResearch
CureME (UK ME/CFS BioBank)
https://cureme.lshtm.ac.uk/index.php/1793-2/
ME/CFS Research @ La Trobe University
https://advancement.latrobe.edu.au/giving/chronicfatigue
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