ME Awareness Month May 2017 marks the next milestone on our journey towards raising money for the specific biomedical studies of the Invest in ME Research Centre of Excellence for Myalgic Encephalomyelitis.
Huge thanks to each and every person (and pet) whose donations, sponsorship, and fundraising efforts for Invest in ME Research enabled the charity’s biomedical research programme to begin in 2013 and to proceed without delays.
We desperately need diagnostic tests and medical treatment options for this disease to be available in the UK, and we patients and families can see that the Invest in ME Research Centre of Excellence is on the fast-track to making this happen, but they cannot do it without your help.
Please keep the momentum going!
This is just a quick funding update so we plan to write more soon.
The original idea by Ruth Gilchrist for One Day – One Pound was for as many people as possible to donate just £1 on May 12th International ME Awareness Day to the charity Invest in ME Research to show support and help raise vital funds for 1st class biomedical research for tests and treatments for ME (Myalgic Encephalomyelitis).
We extended this to include a monthly reminder of our ongoing fundraising for this vital cause on the 1st of each month. Donations at any time are welcome. Every £1 makes a big difference to the vital work of this small charity – Invest in ME Research. View and share the excellent news report by BBC Look East to see just what a difference your donations make – www.bbc.co.uk/iplayer/episode/b08bbztq/look-east-late-news-26012017
Send cheques payable to ‘Invest in ME Research’ to:
Invest in ME Research
PO Box 561,
(add Gift Aid to your donation with Invest in ME Research Gift Aid form)
Please help spread the word….
Let’s Do it for ME is a patient-driven campaign launched in 2011 in support of the proposal by independent UK charity Invest in ME Research to establish a centre of excellence for translational research and patient care based around Norwich Research Park in East Anglia; the first of its kind in UK/Europe and in collaboration with other leading UK and international biomedical researchers.
We help to raise funds for the biomedical research into myalgic encephalomyelitis that the charity is organising and/or funding in their development of the centre of excellence. Our crowdfunding for specific ME research is the first of its kind in UK and has inspired similar projects in Europe and USA. We have now helped to raise over £680,000 for the IiME Research strategy to develop and are aiming for £1,000,000.
Invest in ME Research is run entirely by volunteers who either have ME or are parents and carers of ME patients. They are driving the agenda of scientific research into diagnostic tests and treatments for myalgic encephalomyelitis in UK in collaboration with international researchers of world renown.
The DVDs from the 11th international Invest in ME conference 2016 are now available to order via PayPal or postal cheque. Starting at £14 for Uk purchases, £15 Europe, £17 rest of the world, the DVDs show full presentations from conference plus pre-conference dinner speech. Click here to be the first to buy!
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 email@example.com with subject title Dr Øystein Fluge Public Talk.
The public meeting will be a great opportunity for awareness of ground-breaking biomedical research into ME (Myalgic Encephalomyelitis) of the highest quality.
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.
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.
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
£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.
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
Good news to start the year, Invest in ME Research (IiMER) posted an update to their gut microbiota and related projects being performed at the UK Centre of Excellence for ME in Norwich Research Park due to some very kind donations to their research being carried out in Norwich Research Park at the Instiute of Food Research (IFR) and University of East Anglia (UEA). They wrote –
We have recently received a wonderful donation from the Freemasons in Norwich and from a Ladies Sunday Lunch raffle in Norwich.
IiMER have decided to supplement this with funds from our biomedical research funds in order to make the total up to £2000.
This means that the total we have now raised for past, current and planned projects at UEA/IFR Centre of Excellence for ME is £181,000.
The cheques were presented at a dinner just before Christmas in Norwich.
Collecting the donations on behalf of Invest in ME Research were Dr Ian Gibson, Professor Simon Carding and Professor Tom Wileman, from IFR/UEA.
At the dinner Dr Gibson and Professors Carding and Wileman spoke of the charity and the research into ME being undertaken at UEA and IFR.
More details of this wil be availble from the Institute of Food Research (IFR) site soon.
We are indebted to the Masons and the Ladies for this wonderful gesture.