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

Edinburgh needs to fire the starting pistol, though. I see people have just posted the link the to the Edinburgh donation page but on another thread where that link was given and I asked about whether this was a new possibility for people to donate to, @Andy posted:

I think we need a steer from @Chris Ponting, if no kind of launch has happened. If one is planned, is there a danger in stealing its thunder if we start promoting that fund?

 

I don't think we could do that - we couldn't prove that we wouldn't run off with the money! It would need to be set up by Edinburgh, I think.

 

Thinking more about this, another option is collaborating with Action for ME on it as a specific project.

Chris probably hasn't got time for the necessary admin, but Sonya and her team will have a good deal of the background knowledge. They may not want to do it, specially as co-producing has a habit of being more time consuming than working alone, and AfME will have particular ways of doing things that are different to ours. But on the other hand, it might catch their imagination.

 

Is that more complicated than emailing them and saying «Hey, we want to create a fundraiser for you guys. Can you fix the admin on your side so that the money can go directly to you?»

It would be pretty easy money for them.

 

I know I’m just dreaming because this would require levels of work and financing that we just don’t have, but I kind of wish I could donate to a S4ME run committe that hands out funds to research projects.

 

It's never that simple.

For a start, you have to make absolutely sure you're not misrepresenting what they're currently doing or raising false expectations about what they hope to do. You may also need to credit the existing funders who've made the work possible so far, as well as support in kind and any money from Edinburgh (some centres are very keen on all that, others are more relaxed).

That involves a lot of to-ing and fro-ing over the copy you use in the appeal. Which will need regular updates to keep refreshing the message for social media etc, and all that has to be got right too.

Honestly, it can take two weeks to assemble the right bloody logos!

 

Doing it through Sonya sounds a good plan to me if it is more complicated than just sending donations to an Edinburgh account already set up. But the latter would be the simplest of all.

 

Does it? To me it could be 'that simple'. There doesn't need to be any formal appeal as far as I can see. We live in 'viral' times, in more ways than one. If there is an account to donate to all that is needed is for us to make it known to each other that there is a will to raise a substantial sum. Nobody needs to be misled. The justification is that a lot of people here think this is a worthy cause.

To me there would be a certain extra kudos if the unit just suddenly found that a load of intelligent patients wanted to support them, rather than having to sell their wares.

I got involved in this sort of thing years ago at a point where there was a need for some bridging funds and it was clear from the front page of the Daily Telegraph that we had some promising things going on. About £20,000 came in, if I remember, and it was a long time ago. That was what we needed.

 

I see potential for S4ME to simply start a thread announcing an appeal, sensitively phrased to avoid making PwME feel bad if they're not in a position to donate, and also boosting the appeal via S4ME's social media in posts that others could repost.

But I do think that Edinburgh needs to be consulted on this first. We don't want to steal velocity from the start of any later appeal that they might be planning, because if you can show funds pouring in at the start of any fundraising campaign, people jump on the bandwagon and give money themselves. You want a frenzy of excitement and optimism as the donate-o-meter goes up and up at the start.

 

If I had that kind of money, the first thing I'd fund is a CBT trial using objective outcomes (actigraphy) before, at 3 months, and after 1 year, just so I can disprove the nonsense that most GPs believe. Hopefully the BPS brigade would lose credibility if my study was well publicized.

 

PACE had an objective measure of physical fitness (which involved patients doing a step-test while having their oxygen measured, IIRC) and there was no increase in fitness in any arm of the trial. There's your proof already, I think.

 

What I meant was that most people with ME/CFS have little or no spare money to give. They'd need to share the appeal on social media to people with actual incomes, who'd probably want to know what it's about.

That's where you can start getting into issues with wording and accuracy. If people's work or aims are described poorly the whole thing starts to get uncomfortable.

 

How would you devise an honest information sheet for patients?

 

Fair enough but I wonder if we should be so pessimistic. MEA seem to have acquired £3M research funds for nothing in particular. IiME raise enough to run very costly conferences every year.

If S4ME members decided to donate to the website which is already there, for this precise purpose, and hey presto £100,000 was raised and that made people say why don't we raise some more, just like with the petitions going on, I don't see that in any way pre-empting any more formal appeal. Success breeds success. Nothing ventured, and all that.

 

AfME doesn't have a particularly high level of trust in the UK ME patient community. It seems they have improved quite a lot of late but on the occasions that I have checked social media it seems much the same perceptions of them remain. Many pwME will not give if the large UK patient organisations are the ones asking for donations, and that's something researchers probably won't have considered as they won't have encountered it with the patient organisations for other illnesses.

Of the last four grants MEA/Ramsay have announced only one of them sounds worthwhile to me; as for MERUK, looking at their "current projects page" while they are funding some research that will clearly be of high quality there is also plenty that is evidently not, even just considering the brief lay descriptions provided. So a huge amount of money is being wasted, much of that donated by pwME (who on average have very little).

PwME have been asked on social media to fund fairly dubious & low-quality research efforts but the 2 or 3 teams doing genuinely good or high-quality work haven't really pursued the crowdfunding route. I'd like to see an array of options to donate to high-quality research directly (including being able to set up scheduled direct debits as well as the ability to earmark donations for specific projects) without unnecessary intermediation.

 

I largely agree @Nightsong. There might be an opportunity to do something creative with AfME at this point but at this point I would just be interested to see what reactions might be to this discussion from whatever quarters.

 

Why not email him and ask? He's a very busy man so who knows when he will be back on the forum.

 

Can you elaborate? I've never heard of a information sheet in the context of clinical trials before, how would the information sheet in my trial be any different or less honest from the information sheet in similar research? It's been done before here: https://pubmed.ncbi.nlm.nih.gov/20047707/ .

 

How I said before we already did some crowdfunding campaigns and there are many ME/CFS patients who have money and they can donate. Many patients still work and their partners also. We have experiences that if the project is good and if it has a good traffic on the social media we are able to collect few millions. Also a lot of small donations usually bring some big donations. I did a crowdfunding campaign for OMF some years ago and if I remember correctly the average donations was 130 Eur and we brought few millions to OMF.