Discussion in 'General ME/CFS News' started by Kate_UK, Jun 7, 2013.
http://www.investinme.org/IIME Statement 1306-01.htm
Hope everyones's seen this - is there a another thread somewhere else??
Haven't seen one - I think it's a bit quiet because there's not much detail about it yet and they've announced this before they had enough info to do a full launch and properly get underway fundraising. I'll be mentioning it (in passing) in an article this week and watching out for when more information comes out.
There are a couple of mentions on it, on this forum, but no discussion:
How to donate to the Invest in ME UK Rituximab trial
I've read through the IiME material now, and I'm still not sure how money can be raised - or the announcement made - before they have lined up researchers and clinicians willing to conduct a large-scale trial (which this will need to be).
From memory - and please correct me because I should be resting - raising the money was only one part of the problem (a large part granted but), you also need to ensure that there are people willing and able to do something with the money; and I didn't think this was possible in the UK.
When the announcement was made I felt it was premature and I still have a feeling that it is. But I am happy to be proven wrong. More than happy. It's not a question of 'simply' raising a pile of cash and handing it over to anyone. It needs planning, and for qualified people to be on board to run such a massive undertaking.
Thing is - well one of the things that occurred to me - was, what if the Norwegian study, is not the success we all hope it will be? What then - does the UK study proceed? No especial reason it shouldn't I guess - I mean OMI-MERIT are apparently fund-raising also for a similar project. Worth pondering nonetheless.
I'd rather like to see/hear more of substance I think before committing my own money to this one. I'm sure more detail will get hammered out - although we still are awaiting news about the allocation of the £100k raised in their other campaign.
Also, I wondered if they'd actually spoken to the other charities before making the announcement. I know they've invited others to join them - but perhaps a meeting or three beforehand would have been productive.
A UK collaborative of charities - all together - talking about Rituximab and the possibility of a UK trial... but then I don't know what went on behind the scenes.
Also, will this take the focus off of their main campaign I wonder?
Just wanted to talk these issues over if anyone would like to.
quote: We are pleased to announce that following initial discussions with researchers, across countries, to facilitate this we have now decided to embark on a fund-raising exercise to raise funds specifically for a UK Rituximab trial. Invest in ME believe they have the possibility to do this following the BMRMEC meeting and IIMEC8 conference.......
On reading this I think we can trust them to have someone in mind to do the trial. As far as waiting think there are people who have waited long enough and will want to participate in this trial.Fluge and Mella's results are known but not published don't think they will be inconclusive.......
I think those are all fair questions but I feel confident donating because, for one thing, the worst that can happen is that a Rituxmab trial doesn't come off but other biomedical research gets funded. With IiME's leaders' research connections for guidance and their need for their family member to get the best treatment, I trust them to spend the money wisely if that's what happens. It's a pretty good worst case scenario. Here's a statement from the LDIFME blog:
The fundraising for the Invest in ME Biomedical Research Fund Rituximab Project will be carried out by Invest in ME and its supporters in Let's Do It for ME as well as others.
Currently details are few as we structure this project and begin the work to make it happen.
Funding All funds for the Rituximab project will be isolated from the rest of the Biomedical Research Fund.The TrialMore details will be added here - or in a follow-on page, when we have those details.How Much Needs To Be raisedThis will depend on many factors. As the project evolves we will be able to describe it here.What Happens With These Funds If The Project Does Not Go AheadIf the rituximab project does not go ahead for some reason then the funds raised will be transferred to the IiME Biomedical Research Fund to fund other biomedical research projects which are attached to our proposal for an examination and research facility based in Norwich Research park in Norfolk, UK. These funds will only be used for biomedical research into ME.Invest in MEInvest in ME is formed from volunteers. There are no salaries and no funds will be used for administration costs. All funds raised will be used in full for financing the UK Rituximab project.
I agree it looks like a premature launch - perhaps they felt pressured to announce how they were going to spend the £100,000 now that they'd raised that target, or were emboldened by what sound like positive results coming out from Fluge & Mella, or wanted to take advantage of eyes being on them in the wake of the conference and the good news about the Norwegian MRC contributing to the Haukeland study.
But I wonder if the donation landscape has changed now for ME. Having seen the success of MEandYou and OMI-MERIT, I wonder if ME charities might now be starting to feel that they'll have more success in getting funds in quickly by asking for support for specific projects rather than hoping we'll just donate into a bottomless pit and trust the charities to choose from research proposals submitted to them. I think MEandYou in particular has changed patients' expectations about what they want and how quickly they want it.
The difference for IiME is that they don't yet have researchers with a fully costed proposal ready to go but they sound confident that they will.
I had the same qualms as you, Firestormm, when I first read about this but, as I said, I think the worst case scenario is a good one. That scenario is no different to donating to a research charity like MERUK or the MEA's Ramsay Research Fund, where you don't know in advance what they'll spend it on, other than that it will be good-quality biomedical research.
Thanks for raising these questions - it's good to get any concerns out in the open because if you've got questions, other people will too and it's good to discuss them.
Although Fluge & Mella's study is beginning immediately, it's estimated that it will take two years to complete, let alone for the results to be published, and OMI-MERIT have $7 million to raise for theirs, so I don't think we'll know about success one way or another until (I hope) the UK trial is underway. If either of those studies fails in such a way that it's clear why and that Rituximab shouldn't be pursued then there'd presumably be an option to call off the UK study and reassign the money, which would be a good thing.
Rumour from the conference, though, has it that Fluge & Mella have some positive results to report (from a study looking at maintenance dosing? I don't know). Their findings are currently under embargo until they've published.
Yes, that's a good point. Invest in ME have some extra info that we haven't seen yet. All accounts suggest that it's not going to be disappointing data. Perhaps that's why they've decided to go ahead with a Rituximab fundraiser.
One would expect that some very 'not disappointing' data were behind Norwegian funding body's decision to fork out for the phase3 trial ...
Firestormm, I think you've raised valid and important points.
I suppose that many people have a lot of trust in Invest in ME, and so they trust that their money will be used wisely.
But I totally understand that you want to see some details.
You're right that no one has come forwards for MEA's offer of Rituximab research funding yet, but Invest in ME have lots of connections, especially after their conference, and perhaps they've already got something specific in mind, and will release the details soon. Perhaps they wanted to announce it early while their conference was getting lots of attention.
Yes, worth considering if the follow-up Rituximab studies will be successful, but see my previous post about this.
I must admit that one thing that influences me here is that if I had to choose someone to run a research charity with the goal of doing the most effective thing for patients as fast as possible, it would be not someone with the disease but the parents of a child who has the disease. And that's who is running IiME.
Hi Natasha - have you heard how much money the Norwegian government are spending? I hadn't come across anything although I had heard that the funds raised through private donations would also be used. Any clue as to the 'X' amount that is needed to make the project viable? Thanks.
And thanks for all the replies. Will re-read everything and reply in due course. Am taking it easier today after yesterday's exertions.
Do you know who advises IiME in relation to science and medicine, Sasha? Thanks.
Maybe Professor Carding? He seems involved at least. And I'd heard Malcolm Hooper was assisting, but nothing has been revealed I don't think on the website saying, any medical/scientists are e.g. trustees or hold positions within the organisation. Then maybe it isn't set up like that.
No, I don't know if they have a specific adviser. Because they run that conference, which includes a full day's pre-conference workshop/discussion for the researchers, perhaps they just take their pick according to what they're interested in doing! I would expect that they will have received a lot of advice about how to set about this and what's involved. Other charities, more experienced in funding research, might also help them - the MEA and MERUK have both collaborated on funding projects such as the UK biobank and Prof. Julia Newton's research.
This is all stuff that I would expect to be announced at some point - as I said, it looks to me as though for some reason they saw a benefit of announcing the project when they did, even though they didn't have all their ducks in a row.
Thanks. It would seem that this - if I may - 'new' way of doing things has caught on somewhat. With the campaigns we have seen of late - it doesn't always appear necessary to declare the detail of intent before requesting funds.
I dare say it will appeal more to scientists in the field to know that a stack of cash is available to them before they're asked to do something. Although I would like to at least know such a body of experts are amenable to this particular study in the UK and that it is viable.
This does remind me that in the past IiME were to commission a study in XMRV with WPI and Dr Kerr, but then he advised them not to (because of results he'd completed), and the donors were contacted and funds diverted elsewhere. Not sure where they went - but there's a precedent there at least
Got to admire their enthusiasm
Think we've moved on from the xmrv situation - many were hoping it would be the key, I think it caused a big shift in attitude though and stirred up something - never before has so much interest been shown in this illness by scientists, thats the change we needed. The psychs basically have had it their own way until recently, the lone scientists voices over the years were soon quieted.
They've raised £3,450 and they've only been going a week - looking forward to getting some more detail, which I think is what they'll need to really push this and get it going.
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