Should I raise funds for Edinburgh/AfME or Daratumumab Phase 2?

Should I raise funds for Edinburgh/AfME or Daratumumab Phase 2?

  • Edinburgh/AfME

    Votes: 7 41.2%

  • Daratumumab Phase 2

    Votes: 10 58.8%
  • Total voters
    17
V

V.R.T.

Senior Member (Voting Rights)
I am planning to sell off a good amount of my musical instruments and gear, as well as a lot of my books (I have far too many books) and donate the proceeds to ME/CFS research.

I was thinking of donating the proceeds to the AfME/Edinburgh fund, but the daratumumab phase 2 funding situation has got me wondering if maybe its better to raise money for that study right now.

What does everyone think would be the best use of the funds I raise this way? We have been discussing the fact that daratumumab/CD38 is an important piece of the puzzle as well as a possible treatment, but it is just one trial which will succeed or fail, and perhaps it would be better to invest in the longer term, broader scope research of SequenceME and related projects.

On the other hand daratumumab needs much less money and so perhaps my fundraising will make more of a difference there, and SequenceME may well get adequate government funding, we don't know yet. I've already supported both myself when I've been able to. But I'm finding myself torn on what to focus on for this project.

Poll is not binding, its just to get a feel of the general consensus.
 
Utsikt said:
That’s very generous!

I think Dara has a lower chance of receiving public funding because they have already been rejected many places. So I’m sending most of my donations to them, and I’ll swap to SequenceME when Dara is funded.
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Well, I used to absolutely hoard books in my postgrad days and also have a stash of graphic novels that might fetch a little bit of money. They are taking up space at my parents' house currently (which might be why they agreed to help!) I can barely ever read paper books now, which sucks. But I won't sell my favourites!

Ditto with my instruments, I won't be selling my most beloved guitars, but I picked up a hodgepodge of amps, pedals, synths/keyboards and guitars over the years that arent super valuble on their own but could raise a reasonable sum if I sold them all off. Again, I cant use them much at all and they're taking up space at my folks place!

And yeah, that about was where my thinking was too r.e. daratumumab funding.
 
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Imagree with @Utsikt on all points.

I would add that while SequenceME is going to happen or not based upon government funding they may well need funds now to be able to work on the bid for those funds. Difficult to be sure.

But the Dara Phase 2 does seem to be the one more dependent on donations of the two.
 
Daratumumab might genuinely be a lucky break treatment that really works, but then I have thought this for a number of trials that happened on a small scale and the moment they went mid size they fail. Maybe this is the one, my issue is it fits the same pattern we have seen many times. Its a random bumbled across drug that might work that isn't targeting the known cause of the disease because we don't have one. That might shortcut us out of the hard work and it is the best shot of this type I have seen but people have been taken in by these quite a lot since the pandemic kicked off.

On the other hand AFME and Edinburgh (and other places like MEResearch UK) are about starting at the beginning, looking at what can be reliably found different in ME patients and finding biomarkers. Gradually growing up a solid knowledge base to try and dig through the soup of dysfunctions and odd findings to produce targets that have a good chance of being at the core of the disease. This wont be a quick process, honestly I suspect none of us suffering this disease will be treated by this process as its going to take decades, but its also the sure fire well travelled scientific approach and I don't think we have a process that can go faster and better that isn't basically a random walk.

Both approaches have brought advances in diseases, many diseases are treated by random findings, but less nowadays than in the earlier days of medicine. Perhaps the chance of government funding plays into this and then Daratumumab needs it more than Edinburgh which I think will get funded just because the government is under some pressure and doesn't have a clue what else to even do. I am not sure myself what the right thing is, I lean more towards pessimism and hence believing this is it for us but the future can be changed and hence lean to the longer route. But like all hypocrites I would definitely take part in a Daratumumab trial if it was on offer!
 
I think you make some good points. Daratumumab could be our golden ticket but I remember (other spaces) getting hyped for ampligen, temelimab, efgartigimod, BC007 etc. It does look like the most promising of the 'happenstance' based treatments I've seen in the five years I've been paying attention though.
 
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