From Norway to Norwich – IiMER Rituximab Trial Update

Haukeland Team to Visit UK for Rituximab Trial Planning and Public Talks

Dr. Øystein Fluge and Dr. Ingrid Rekeland from Department of Oncology and Medical Physics Haukeland University Hospital, Bergen, Norway, will be joining Professor Simon Carding from the Institute of Food Research (IFR) and University of East Anglia, for an event being held at The Assembly House in Norwich on 26th January, from 6.30pm to 9pm.

The meeting is open to the public and and the talks will be CPD-accredited.

Admission is free and places may be reserved by contacting Invest in ME Research by using the contact form on their website, or by emailing the charity at info@investinme.org with subject title Dr Øystein Fluge Public Talk.

fluge-norwich
The public meeting will be a great opportunity for awareness of ground-breaking biomedical research into ME (Myalgic Encephalomyelitis) of the highest quality.

However, the main purpose of the visit by Dr. Fluge and his team is to discuss the UK clinical trial of rituximab as a treatment for ME, planned to be conducted in Norwich, the hub of the Invest in ME Research Centre of Excellence for ME. From an article on IFR News and Events –

Dr Øystein Fluge, a senior consultant and oncologist at Haukeland University Hospital in Norway will be talking about ground-breaking research he is leading on Rituximab. This drug has been used to treat leukaemia and lymphoma, as it targets B-cells, a type of blood cell. In 2004, Dr Fluge noticed that ME patients being treated for lymphoma with Rituximab also saw substantial improvements in their ME symptoms. Subsequently pilot studies and a randomised, blinded, placebo controlled study also showed positive results, with a large, multi-site Phase III clinical study now running.

Dr Fluge is visiting Norwich to collaborate over another Rituximab trial being carried out on the Norwich Research Park. Professor Simon Carding from the Institute of Food Research (IFR) and University of East Anglia will also be talking about at the event about this, as well as research in his own group, who are looking for causes and treatments for ME in the gut and its microbial communities. The Norwich Research Park is establishing itself as a hub for biomedical research into ME, in the UK and Europe and through international collaborations.

Read in full at http://www.ifr.ac.uk/news/events/2017/01/mecfs-biomedical-research/

Solving Complex Disease With High-Quality Biomedical Research and International Collaboration – Invest in ME Research (IiMER) wrote –

We are pleased to announce that Dr Øystein Fluge and his team from Haukeland University Hospital in Bergen, Norway, will be visiting the Norwich Centre to continue and extend the collaboration between IiMER-funded researchers as the plans for the UK rituximab trial develop.

Already the IiMER funded researchers have been collaborating with Dr Fluge and Professor Mella and the team in Bergen – with Dr Jo Cambridge and Fane Mensah both having visited Norway as part of their continued collaboration to study the potential role of B cells in ME and they continue this collaboration.

IiMER also funded our advisor, Professor Jo Edwards as the first to visit Bergen back in the autumn of 2013.

This close collaboration benefits all researchers involved and is greatly appreciated.

Establishing biomedical research into ME and arranging clinical trials is not, and has not been easy. Invest in ME Research have been working tirelessly for many years attempting to foster, encourage, find, facilitate and eventually fund high-quality biomedical research which is built on a strategy which will lead to an understanding of the aetiology of this disease and the development of treatments.

Our strategy is also founded on international collaboration – of the right stuff.

This development is a further example of that strategy taking effect.

Read in full at http://www.investinme.org/ce-news-1611-02.shtml

The international collaboration fostered by Invest in ME Research extends beyond Europe. The charity’s 2016 international conference events enabled UCL B-cell/rituximab researchers Jo Cambridge and Fane Mensah to meet Chris Armstrong from Australia and Zaher Nahle, Vice President for Research and Scientific Programs at Solve ME/CFS Initiative. The USA organisation selected the three UK and Australian researchers as Team Two to benefit from their inaugural Ramsay Award Program, for a study of B-Cell Function, Maturation, and Biochemical Alteration with Rituximab-Based Therapy, a welcome addition to the IiMER funding of this aspect of their UK Centre of Excellence translational biomedical research strategy. Details here – http://solvecfs.org/ramsay-research-team-2-studying-b-cell-function-maturation-and-biochemical-alteration-with-rituximab-based-therapy/

Fane Mensah also gave a poster presentation at the IACFS conference at Fort Lauderdale in Florida, thanks to a travel grant awarded by Solve ME/CFS Inititaive, meeting up again with Team Haukeland, pictured below showing support for the Invest in ME Research Centre of Excellence for ME. More here – http://www.investinme.org/ce-news-1610-03.shtml

fane-bergen-team

£1/2 million Raised/Pledged for B-cell Research/Rituximab Trial – on the subject of funding and support for the IiMER UK Rituximab Research, the charity wrote

In 2013, following the BRMEC3 Colloquium, Invest in ME and its supporters honoured the commitment made by the charity a year earlier, at the IIME7 conference in 2012, to initiate a UK rituximab trial project.

Thanks to a wonderful group of supporters and support which came from around the world and the generous donations from people who want to see progress in the treatment of ME, this campaign was started and soon it was on its way to initiate research which had the opportunity of overturning the way things had been done, or not been done before.

An attitude of CAN DO instead of can’t do is the ethos of IiMER and this is supported by the WILL DO attitude of the Let’s Do It For ME campaign.

Then one event of enormous significance occurred with a magnificent gesture from the Hendrie Foundation to support the charity’s rituximab project and its strategy of international collaboration with a pledge eventually totalling £275,000, together with an initial donation of £25,000, which allowed this research to become reality and to move things on more quickly.

The work progressed with the team at UCL where it was decided early on that a preliminary B-cell study ought to be performed in order to try to replicate the B cell findings of Bansal et al. and to determine likely responders to the drug. This was something that our advisor and the UCL department thought was necessary.

This was initiated in 2014.

PhD student Fane Mensah is now continuing this B-cell research with Dr Jo Cambridge – again funded by IiMER.

This is important work and it is being enhanced by the international collaboration which we have encouraged and facilitated.

During this time the research team has collaborated with the researchers at Haukeland University hospital in Bergen, Norway – where work on a series of rituximab trials began to take shape as early as in 2004 – facilitated by IiMER’s Colloqiums, conferences, EMERG meetings, our strategy for international collaboration and our supporters.

After preliminary B-cell study was underway there was an internal reorganisation in the clinical trials unit (CTU) at UCL which resulted in the principal investigator being moved away from the project and the CTU being downsized. When this was communicated to the charity then we began to look for alternative solutions.

The trial was advertised on our web site in order for interested parties to apply to the charity and at the same time the charity actively continued to look for a place for the trial as the B-cell research continued.

The preliminary B-cell research paper was published in 2016.

After an expression of interest from UEA/IFR it was agreed to relocate the rituximab trial to Norwich Research Park, home for the UK Centre of Excellence for ME.

In January Dr Oystein Fluge and his team will visit Norwich to work with the UK researchers in planning the trial.

The original target for the rituximab trial was set by our advisor back in 2013. Having shown great vision and determination in looking at other areas of research linked to their phase III trial experiences and developing an incremental, evolutionary method of research then we feel the Norwegian Haukeland researchers have exactly the model of how good research should proceed. With the progress made by the Norwegian researchers and the increased knowledge now gained by them it will be interesting to see how the UK trial planning will progress with this new collaboration.

The objectives of the charity have been international collaboration and we are very pleased that a great deal of European collaboration in research into ME has already been occurring and continues.

To initiate the B-cell research and the UK rituximab trial has been a major effort and we owe so much to dedicated supporters from around the world. The charity has had donations and pledges from many organisations and individuals around the world.

They have believed in the charity and the research.

We welcome support still for this research. Donations or pledges can still be made in support of the Invest in ME Research-led project.

Read in full at http://www.investinme.org/ce-news-1611-03.shtml

UPDATES

The video clip below of the Haukeland ME team on Norwegian TV news talking about their latest study now has English subtitles added. They say once again very clearly that ME is a physical disease and it can be treated. Good to hear these objective and careful researchers sounding so positive.

Another excellent news clip featuring an interview with Dr. Fluge on his team’s latest findings and their rituximab trial now also with English subtitles. The clip also features Norwegian advocate and mother of three children with ME, Kjersti Krisner, who gave the pre-conference dinner presentation at the Invest in MR Conference events in London in 2016, inlcuded on the IIMEC11 DVD. Read about it here – http://www.investinme.eu/IIMEC11-news%20Pre-Conf-Postscript.shtml


NEW YEAR DONATIONS UPDATE for B-CELL/RITUXIMAB RESEARCH

Links –

IFR News and Events- Public Lecture in Norwich on ME/CFS biomedical research

IiMER- Solving Complex Disease With High-Quality Biomedical Research and International Collaboration

IiMER Rituximab Trial Update- £1/2 million Raised/Pledged for B-cell Research/Rituximab Trial

Ways to Donate

Funders and Supporters of the IiMER UK B-cell/Rituximab Research

IiMER is an independent charity run entirely by volunteers. They have no paid staff, no income from government funds or membership fees.Thanks everyone supporting Invest in ME Research
and their Centre of Excellence for ME

16 comments on “From Norway to Norwich – IiMER Rituximab Trial Update

  1. I am visiting Norway in July. I would come to Bergen if I could take part in the Rituximab trial. I have currently been taken Rituximab (3 infusions so far) I spoke to Dr. Mella at the IACFSME Conference this year.

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