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The IiME/UCL UK Rituximab Trial inital target has been reached

deleder2k

Senior Member
Messages
1,129
Great news from the United Kingdom today:

In the weeks following the Invest in ME Conference 2013 events in London the charity announced its intention to initiate a UK clinical trial of rituximab for ME in cooperation with UCL. After discussions with our advisor, professor Jonathan Edwards and the UCL research team under Dr Jo Cambridge, the charity organised a visit to Bergen by Professor Edwards to discuss with the Norwegian researchers Professor Mella and Dr Fluge. For the last year Invest in ME and our supporters have been raising awareness of the trial and raising funds.

Now, thanks to patients with ME and their families and friends - and with enormous and generous help from a foundation's pledge in memory of Roger Hendrie - the Invest in ME/UCL clinical trial project clinical has reached the initial target of £350,000.

This is a truly amazing effort in which so many can deservedly congratulate themselves.

We again thank our supporters who have done so much to change things (see earlier tribute to our supporters - an international event).



We continue our efforts to raise the remaining funds for a contingency fund as the preliminary B-cell study which is now underway may result in changes to the trial.



We thank all those who are supporting this trial and we hope for continued support.



Invest in ME and its supporters have achieved this by themselves.

One event can change everything - one small charity one BIG Cause.

Great to see a trial is soon underway in both U.K and Norway.
 

Min

Guest
Messages
1,387
Location
UK
10574262_10152282619332507_3034876034836565418_n.jpeg
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Such fantastic news! Let's hope the results are everything we hope for and that M.E patients will soon be looking forward to not just having a treatment available, and an explanation for our illness, but being treated with respect and concern by the medical profession.

Bring it on!
 

NK17

Senior Member
Messages
592
This is music to my ears ;). Now I'd like to see things moving here in the US too, but I'm afraid we'll have to wait a few years to get both the Norwegian and British studies' results analyzed and published, before the FDA will start to seriously look into this.
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
Why can I not find the IiME UCL Rituximab trial on clinicaltrials.gov? The Norwegian trials are easy to find there.
 
Messages
2,087
The trial design hasn't been finalised yet - there's some important preliminary work that needs doing first.

http://www.ukrituximabtrial.org/Rituximab news-Aug14 02.htm

Does anyone know when the next update is due on this trial ? Last one seems to be Aug 14.

Also, any potential start date / end date for the clinical trial itself ?

I find sometimes just knowing the schedule brings me a calmness.

Is the aim of the preliminary study to identify which subset of patinets are likely rituximab responders ? If so would it be possible then for a CFS patient to get a blood test to know if they are a repsonder or not ?
Thanks
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Does anyone know when the next update is due on this trial ? Last one seems to be Aug 14.

Also, any potential start date / end date for the clinical trial itself ?

I find sometimes just knowing the schedule brings me a calmness.

No recent updates.

Is the aim of the preliminary study to identify which subset of patinets are likely rituximab responders ?

Yes, that's correct.

If so would it be possible then for a CFS patient to get a blood test to know if they are a repsonder or not ?
Thanks

We hope so! But I'd be surprised if it was a test that you could get from your GP - I'd think it was more the sort of test that researchers use in the lab.

Is that the case, @Jonathan Edwards?
 
Messages
2,087
No recent updates.



Yes, that's correct.

Do you think we could suggest / encourage more frequent updates ? I don't want to distract them from their fantastic work but it would be nice to get some form of regular update. Even just to say everything is on track for XX date ?

We hope so! But I'd be surprised if it was a test that you could get from your GP - I'd think it was more the sort of test that researchers use in the lab.

Is that the case, @Jonathan Edwards?

Would be nice to get the experts opinion on this and how likely a possibility this is within the next year or so ?

Thanks
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
BurnA said:
Do you think we could suggest / encourage more frequent updates ? I don't want to distract them from their fantastic work but it would be nice to get some form of regular update. Even just to say everything is on track for XX date ?

I agree, it's always good to get updates on a long-burn thing like this when we're all waiting in eager anticipation, even if it's just "we're not there yet" or "the next steps are X, Y, Z."

Why not email IiME and suggest it?
 

Jonathan Edwards

"Gibberish"
Messages
5,256
No recent updates.



Yes, that's correct.



We hope so! But I'd be surprised if it was a test that you could get from your GP - I'd think it was more the sort of test that researchers use in the lab.

Is that the case, @Jonathan Edwards?

I don't think there is anything particular to update at present. Tests for responders are going to have to be validated by trials as we move forward so there is nothing to be measured just now.
 
Messages
2,087
I don't think there is anything particular to update at present. Tests for responders are going to have to be validated by trials as we move forward so there is nothing to be measured just now.
Thanks a lot..
I appreciate from a scientific point of view there may not be anything to update but even from a scheduling point of view is there anything to say ? i.e. proposed end date of current study, next steps, proposed start of further trials etc ? It would be nice to know, even if its a best guess.

When you say tests need to be validated by trials - would that be the clinical trial or a further study as part of existing preliminary study ? Will it possible to begin such trials without delay or when would be likely ?

Could you estimate when it might be likely that a CFS patient could get there blood tested to determine if they are a responder or not ?

Also, for the non responders, is there any progess on the horizon for them ?

Thanks, - I realise I have asked a lot of questions so any info at all would be very reassuring.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Thanks a lot..
I appreciate from a scientific point of view there may not be anything to update but even from a scheduling point of view is there anything to say ? i.e. proposed end date of current study, next steps, proposed start of further trials etc ? It would be nice to know, even if its a best guess.

When you say tests need to be validated by trials - would that be the clinical trial or a further study as part of existing preliminary study ? Will it possible to begin such trials without delay or when would be likely ?

Could you estimate when it might be likely that a CFS patient could get there blood tested to determine if they are a responder or not ?

Also, for the non responders, is there any progess on the horizon for them ?

Thanks, - I realise I have asked a lot of questions so any info at all would be very reassuring.

I think the thing that should reassure people most is that we now have several high quality research groups in Europe, North America and Australia all trying to pin down the immunological side of the condition. What is particularly important is that they all want to share data and compare notes and feel confident that they are getting real answers. I gather from IiME that some new grants have been awarded in the US which is also good news. Researchers get together regularly and weigh up the pros and cons of moving forward this way or that way, constantly rethinking the arguments to make sure resources are used most effectively. It has taken longer than we initially expected to get a UK trial up and running (and I cannot say anything more specific) but the Norwegian phase 3 study has taken off and momentum is building.

I am sorry not to be able to say anything more specific but trial design is a very fragile thing and giving out information constantly can get in the way of having the best options.
 
Messages
2,087
Thanks again and I understand not being able to give out specific information. ( dates would be nice though :) )

Regarding the immunological side of the condition, I read in another thread you believe that may represent 60% of patients. Can you elaborate on how you came to that figure ?
Also, is there any attribute that can be linked to the immunological side of the condition ie specific symptoms, onset, duration, severity etc. ( From the phase 2 norwegian study there doesn't appear to be but just wondering if anyone has looked at or might look at this.)
For the non immunological side - is there any work on this to understand it better ? Are there two different diseases at play here ?
Thanks very much yet again!