If ME/CFS research got £1 billion, what would stop it being wasted?

if so many people here think that Chris Ponting is a good candidate who could significantly move ME/CFS field why not to do a crowdfunding campaign for him. I think it could bring 5 mil. Eur a year. We did it in the past with OMF, Lipkin, Rituximab and it worked. 5 mil. is not 1 billion but it´s at least a good start.

 

It is none of my business how people with ME/CFS want to spend their money on research but I do think there is an opportunity now to try to raise perhaps £250K (it might turn out more) to ensure that the follow through from DecodeME is as well supported as possible.

So far the capacity of the S4ME network to raise funds has not really been tested and maybe it should. Success breeds success as they say. Enthusiasm for other channels seems to be at a bit if a low ebb too.

 

Agreed.
Absolutely.
I do hope so.

 

I’m out of the loop here. Can you explain what DecodeME needs the money for? Are they not fully funded?

 

Follow up question: if I remember correctly Audrey's position is only funded until the end of the year. Has additional funding been secured yet?

 

DecodeME was funded and is winding up with data analysis in the first half of this year. But if funding cannot be secured for the next big project over the next six months the unit may well be unable to retain the team and all that has been learnt from working as a team.

Science funding tends to be a mixture of big grants for major projects, which come unpredictably and not necessarily for the best ideas, and bridging funding that keeps a team together and in particular allows junior researchers to win the confidence of people who matter, and step up into long term positions.

In many ways it would make more sense for research funding to be awarded after someone has demonstrated skill in a completed project - to let them do more. in the past that has been an implicit aspect of the way funding was given out but even then never explicit. Now that projects can have such big lab costs it isn't practical. So in many ways bridging funding is even more important now.

 

As Tuha points out, the wider ME/CFS community has helped get individual labs/projects funded but it requires leadership, which in the case of the Edinburgh lab, would need (I assume) to come from Edinburgh. Teams of PwME and/or their charities and organisations have teamed up with such leadership in the past to boost fundraising: a group of PwME on the other forum worked hard to fundraise for the Lipkin work.

I think a lot of us would be very keen to help Edinburgh get funding but the word needs to come from the top.

 

I echo @Sasha here. I’ve got donations left this year and I’d love to give directly to a good project.

The Norwegian MEA has a research fund that I will donate to if that doesn’t happen. They are the only ones I trust to put the money to good use.

 

No, because the funding has been pared way back and now we have to compete with LC studies generating data on other aspects of LC or other low quality nonsense. That 1/100 LC study generating useful data may have nothing at all to do with ME/CFS.

 

@Chris Ponting if there is some bridging funding required to keep your team together or to ensure that the final steps and possible follow ups of DecodeME can go as smoothly as possible before additional funding would come in, please let us know. I am sure ME/CFS patients can come together to help fundraise.

 

Has long COVID really led to reduced ME funding? I wasn’t aware of that?

 

I thought it was the opposite? I have a vague memory of a graph that showed an increase in ME/CFS funding, but no change in Lyme or Fibro.

This is not that graph, but it shows projects in Germany and Austria. They are probably the best case.


https://mecfs-research.org/en/researchupdate/

 

I am not sure what 'leadership' means here. People often donate large sums of money to research units without being asked by the unit - in legacies for instance. Jo and I had a legacy of over £100,000 out of the blue on one occasion. It would obviously be useful to know how the Edinburgh people would view a crowdfund but raising money for research is a full time grinding-to-the-bone activity as it is. Charities raise money for favoured units on a regular basis. We are not a charity but I am not sure that makes a difference.

 

@Jonathan Edwards would it be possible for them to at least write something to the tune of «this is where we’re at with funding, this is how much we need»?

I’m sure someone here could set up a crowdfunding of some sorts based on that. I imagine the members can reach a lot of patient communities.

 

It’s muddied the waters. I believe I made a thread about this on here. For example, AP has brought in a bunch of money for LC research but it’s my understanding it’s mostly going for viral stuff, which I don’t believe will help us. If she gave this money to Fluge or Ron Davis’ group then that would be a net gain, but as it is, I don’t have a lot of confidence that a lot new to the game LC researchers bring a lot to the the table.

If you find that thread I mentioned there were maybe 2 examples of LC researchers who might be making a difference for ME/CFS research.

 

Someone has to be legally responsible for the money raised, though. Even if it's done via a platform like GoFundMe, there will have to be an agreement in advance about which account the money is to be paid to. Ideally, it would go directly to the university of Edinburgh (or wherever Chris's budget is located).

Completely agree about keeping the team together, that's a huge priority. It would take another year or more to rebuild all that knowledge and experience, and it'd be a terrible waste. That story might make a compelling centre for a fundraising appeal, along with info about, say, a shortlist of things the team would like to work at if they can patch together enough ongoing funding.

ETA: as well as info about the things they've already managed to achieve—including things that weren't even funded, like the recent paper they published. People like to hear about that kind of commitment as well as them doing proper, honest science.

 

I agree that long COVID has kind of revived a mostly irrelevant viral persistence theory for ME/CFS and that is probably sending funds to a dead end.

But also, who am I to say that, I can’t even tell you what half the words in the average biomedical paper mean.

 

https://donate.ed.ac.uk/support/ME-CFSResearch

 

This one: https://institute-genetics-cancer.ed.ac.uk/research/support-our-research/me-cfs-research