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Invest in ME now fundraising for a Rituximab trial!

Sasha

Fine, thank you
Messages
17,863
Location
UK
Wow - and I would expect that to really pick up once they've got more info out. Very well done to them! :thumbsup:
 

Battery Muncher

Senior Member
Messages
620

Sasha

Fine, thank you
Messages
17,863
Location
UK
Wow - someone just dropped £1,000 on their Justgiving page (with Gift Aid, which brings it to £1,250).

Their total is £11,900 now - and as far as I know they don't even have a press release out. If they can do this without even trying, I wonder how fast this fund will move once they're really underway.

Good news for the UK! :)
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
13 July 2013 Announcement:

Invest in ME have been working on the possibilities of initiating a UK clinical trial using rituximab to treat ME patients following on from our Biomedical Research into ME Collaborative Meeting (BRMEC) on 30th May 2013 and the 8th Invest in ME conference IIMEC8) on 31st May 2013.

At these meetings Professor Olav Mella and Dr Øystein Fluge presented further evidence of the efficacy of rituximab in the treatment of ME patients in Norway and it became clear that a similar trial is needed in the UK to benefit UK ME patients as well as provide support for the international efforts in finding treatments for ME.

We are pleased to announce that Professor Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London (UCL), has agreed to advise the charity on all aspects of a UK rituximab trial.

Professor Edwards was responsible for both the phase I and the proof of concept phase II (NEJM 2004) studies in rheumatoid arthritis , which formally established the validity of B cell depletion in autoimmune disorders. It all started with a paper called ‘Do self-perpetuating B lymphocytes drive human autoimmune disease?’ published in Immunology in 1999 [1].

There is no other expert in the UK who is better placed than Professor Edwards in advising the charity in setting up a rituximab trial to benefit ME patients.

A plan is being formulated and Professor Edwards and the charity are involved in discussions to establish feasibility and suitable siting for the project.

At our BRMEC and IIMEC8 conference meetings we discussed with the Norwegian researchers (Fluge and Mella) about cooperation on this and other projects and we will be setting up further meetings now that this plan is being progressed.

A great deal of work necessarily needs to be made, not least of which will be a huge effort by the charity and its supporters to raise the funding.

The charity has a number of pledges and offers of support and we will continue to develop more – raising the profile of this project and raising awareness of ME.

We welcome your support.

1. Edwards JC, Cambridge G, Abrahams VM. Do self-perpetuating B lymphocytes drive human autoimmune disease? Immunology. 1999;97:188–196. [PMC free article] [PubMed]
 

Battery Muncher

Senior Member
Messages
620
Over £13,000 pounds now! :thumbsup: That's £3,000 between July 6th-July20th (two weeks/14 days)!

Also, very pleased to see J Edwards on board :)
 

Kate_UK

Senior Member
Messages
258

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I don't know where to post minor news about UK Rituximab studies, as there are so many threads.

There are some Rituximab study discussions in the latest minutes (July 2013) from the Forward ME Group:
http://www.meassociation.org.uk/?p=16383

The minutes are worth reading in full, but here are the extracts re Rituximab, taken out of context...

3.5 Referring back to prevalence of the illness, Dr Shepherd agreed epidemiological studies were necessary but, with (eg) investigation of Rituximab in mind, was there not a need for some figure for researchers to work with now? Prof Holgate said that an overall figure could be problematic. Take Rituximab – suppose it turned out in most cases to be negative, but perhaps 10% might benefit from it? You could be missing a fantastic opportunity for that minority. “One size fits all” was not appropriate; we must find the underlying cause of the illness first. It might take two to three years but it would be worth it.

...

7. Research
It was agreed that Professor Holgate’s talk had been very good. On Rituximab Dr Shepherd said that people were raising money for a trial in the UK, and the MEA would be putting out a statement the following week. The problem was that so far no-one in the UK wanted to do that research. Also it would be very expensive – probably around £400,000, so more funders would have to be found. Sue Waddell said we needed to make it clear that there had been good research in the past.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Bob Yes there are rather a lot of disparate Rituximab threads; it can be hard knowing where to place things or whether to create new threads all the time... Still all good stuff :)
 

sproggle

Jan
Messages
235
Location
Teesside, England UK
The MATRIX.

A new idea from the Let's Do It For ME team.

The aim of the Matrix project is to help to raise as much as possible of the estimated £350,000 required to fund this trial by inviting 100 pledges to raise or donate £1000 each.

We invite patients, families, friends and ME support groups to support us and join this fundraising exercise to begin the UK rituximab Trial which IiME have initiated.

http://www.investinme.org/IIME UK Rituximab Trial Matrix.htm