Invest in ME now fundraising for a Rituximab trial!

sproggle

sproggle

Jan
Messages
235
Location
Teesside, England UK
New total for UK Rituximab Trial Fund of £17,000 - Let's Do It!
http://ldifme.org/

Msg from IiME: 'Thank you all for this wonderful support - it sends a message to everyone!'

There is now a Summary of the main points of the trial on the IiME Ritux Trial page:

Quick Overview and Summary of The Main Points of This Trial:
• Invest in ME have initiated a UK rituximab Trial
• Our advisor Professor Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London (UCL)
• The clinical trial would be performed at University College London
• The UCL service set up when we started treating rheumatoid arthritis, lupus and a range of other conditions has the most extensive experience.
• There is laboratory expertise in B cell immunology under Dr Jo Cambridge.
• UCL also has a new Clinical Trials Research Facility with staff appointed to manage trials of this sort.
• The trial is being set up in collaboration with clinicians with expertise in ME from around London, and in particular Dr Amolak Bansal.
• The UCL proposal will be rigorously evaluated by UCL in their customary comprehensive and very professional manner.
• External peer reviewing will be arranged by UCL and the charity.
• Invest in ME have arranged for Professor Edwards to visit Dr Fluge and Professor Mella in Bergen, Norway to discuss this - enhancing cooperation and research.
• Invest in ME have welcomed support from other charities, organisations, ME support groups and patients in helping us fund this trial.
• We will also accept pledges of financial support pending full peer review of the proposal.


http://www.investinme.org/IIME UK Rituximab Trial Home.htm#Our
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Email from Invest in ME...
I assume they won't mind me copying it here...
​
Invest in ME​

A Web Site for the ​
UK Rituximab Clinical Trial for ME​

August 2013​
In order to make it easier for ME patients, ME support Groups, charities, organisations, researchers and the media to find more easily and bookmark the central point for the UK Rituximab Trial then Invest in ME have set up a special micro-site to collate all of the relevant information.

simple to remember - UK rituximab trial.

We hope this makes it easier for everyone and we welcome support and additions to the site as the trial begins.
The micro-site includes the new MATRIX fundraising scheme which allows everyone to participate and support us and at the same time provides recognition.
A facility will be added to allow questions to be posed and answered.
Thank you to everyone who is supporting the UK rituximab trial.
We have had support from twelve different countries already.

Just to summarise -
  • We have the facilities available
  • We have the researchers available
  • We have the best expertise possible available
  • We have the means of fundraising for this trial available - see The MATRIX
  • We have already contacted others to invite them to support our fundraising efforts and we welcome pledges for funding, even delayed until the peer review process has been achieved
Invest in ME have contacted other organisations and welcome their pledges for financial support as well as moral support. To those organisations who are really helping us and working toward the same common goal we thank you.
To all our supporters and the fantastic Let's Do It For ME team our thanks are eternal. We are truly humbled by the support you are giving us, by the efforts you are making and by the integrity you are showing.

Invest in ME are coordinating this trial and the fundraising with Professor Jonathan Edwards. More news will be made available on the new web site.
We invite everyone to participate.
Please support us in this venture - by helping funding, by helping in fundraising or even just raising awareness of the charity's proposal.

Thank you.
Click to expand...
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
Firestormm said:
Confused. "International collaboration". What's that mean then exactly? Ta :)
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You'd have to ask them but they may well be referring to a collaboration of expertise. Dr Kogelnik was at their conference and their pre-conference speaker was the OMF's Linda Tannenbaum so they've got close links. All the other Rituximab ME trial people - Fluge, Mella and Scheibenbogen (Germany, trying to get a trial going) - were also at the conference and no doubt sharing expertise.
 
Firestormm

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Sasha interesting you mention Germany. I did notice last week I think when trying to discover more about IiME and who were their scientific advisors and decision makers - that they'd flagged a trial in Germany; but can find no information about it. I think you are probably correct in thinking that the institute mentioned - and I forget the lady's name but it seemed a great conference speech that Mark commented on in his article - was 'thinking' of maybe doing a study. Perhaps the announcement on the IiME website was a little premature. Cheers Sasha x
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
Firestormm said:
Sasha interesting you mention Germany. I did notice last week I think when trying to discover more about IiME and who were their scientific advisors and decision makers - that they'd flagged a trial in Germany; but can find no information about it. I think you are probably correct in thinking that the institute mentioned - and I forget the lady's name but it seemed a great conference speech that Mark commented on in his article - was 'thinking' of maybe doing a study. Perhaps the announcement on the IiME website was a little premature. Cheers Sasha x
Click to expand...


I haven't seen any info about the German trial apart from in this para from IiME's new site on the homepage:

These groundbreaking results gained international attention when the study was published. In Germany, Professor Carmen Scheibenbogen is already looking at possibilities for a rituximab trial and in the US, Dr Andreas Kogelnik’s Open Medicine Institute is raising funds for a study. Dr Fluge and Professor Mella are beginning a confirmatory trial in January 2014, part-funded by the Norwegian government; at our 2013 conference, they presented further evidence of the efficacy of rituximab in the treatment of ME patients.​

It was Linda Tannenbaum (OMF, which is OMI's fundraising arm) who gave the conference speech and the trial she was referring to was OMI's, which they've costed at about $7 million. It's already part-funded (I don't know to what extent) but clearly it's going to be quicker to fund a smaller trial like the UK one, which will also be faster to complete, than wait for a larger US trial with more patients to fundraise and then complete the study with all those patients to recruit and run. As Prof. Edwards says, you can get a lot out of a small trial if the estimated effect size is large.

I don't think the IiME announcement was premature, just perhaps worded a little confusingly - I think they were just welcoming the message of support. I think they're right to do so - acknowledging support is a good way to build relationships and confidence.
 
Firestormm

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
This was/is still on their main website and from where I got the information originally:

Professor Carmen Scheibenbogen is also performing a rituximab study in Germany.
Click to expand...

Mark covered the IiME conference and Professor Scheilbenbogen's contribution in his article here which was where I thought she and Mark might have referred to any trial had one been indeed planned; but they didn't.

Anyway, I didn't know the OMI initiative was 'part-funded'. We were talking only recently about it I thought and don't recall mention of that. Probably mistaken. Be interested in any detail should you come across any. I'll have a look later some time too.

Thanks :)
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
Firestormm said:
Anyway, I didn't know the OMI initiative was 'part-funded'. We were talking only recently about it I thought and don't recall mention of that. Probably mistaken. Be interested in any detail should you come across any. I'll have a look later some time too.
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My info is from the DVD of the IiME conference (I think, memory, memory o_O ) that I got last week - in Linda's talk (or possibly Dr Kogelnik's), each of their ten projects was mentioned and a little 'partially funded' or 'fully funded' flag went up on their slides for certain projects.

By default, any donation to the OMF goes into the Rituximab trial because that's their priority project - you have to specify if you want it to go to another project. I donated to them before I was aware of that so it's technically possible that my donation of a few quid qualifies that $7 million trial as 'partially funded'! :) But I know they very actively chase big donors so let's hope it's not just my paltry contribution funding that trial. :cool:
 
Firestormm

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Sasha said:
I haven't seen any info about the German trial apart from in this para from IiME's new site on the homepage:

These groundbreaking results gained international attention when the study was published. In Germany, Professor Carmen Scheibenbogen is already looking at possibilities for a rituximab trial and in the US, Dr Andreas Kogelnik’s Open Medicine Institute is raising funds for a study. Dr Fluge and Professor Mella are beginning a confirmatory trial in January 2014, part-funded by the Norwegian government; at our 2013 conference, they presented further evidence of the efficacy of rituximab in the treatment of ME patients.​

It was Linda Tannenbaum (OMF, which is OMI's fundraising arm) who gave the conference speech and the trial she was referring to was OMI's, which they've costed at about $7 million. It's already part-funded (I don't know to what extent) but clearly it's going to be quicker to fund a smaller trial like the UK one, which will also be faster to complete, than wait for a larger US trial with more patients to fundraise and then complete the study with all those patients to recruit and run. As Prof. Edwards says, you can get a lot out of a small trial if the estimated effect size is large.

I don't think the IiME announcement was premature, just perhaps worded a little confusingly - I think they were just welcoming the message of support. I think they're right to do so - acknowledging support is a good way to build relationships and confidence.
Click to expand...

Open Medicine Foundation, back in January 2013, announced a $100,000 donation to their Rituximab Trial. And confirmed an initial costing at $7,650,000. It is very difficult - impossible - to see from their website what the total might be now for funds raised. I'd be interested to learn more. It will be a large undertaking - no doubt about that. But that's all I could discover about this proposal. Have you seen an actual breakdown of what they intend doing? Number of patients/controls etc.? Thanks :)
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
Firestormm said:
Open Medicine Foundation, back in January 2013, announced a $100,000 donation to their Rituximab Trial. And confirmed an initial costing at $7,650,000. It is very difficult - impossible - to see from their website what the total might be now for funds raised. I'd be interested to learn more. It will be a large undertaking - no doubt about that. But that's all I could discover about this proposal. Have you seen an actual breakdown of what they intend doing? Number of patients/controls etc.? Thanks :)
Click to expand...


Thanks for that - no, I'm afraid I don't have any more info.
 
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