£900k Crowdfunded for Biomedical ME Research
If you have been with us from the start then please congratulate yourself on your part in changing the landscape of research and future treatment of ME in UK and beyond! Also please accept our massive thanks for your ongoing support to help the charity Invest in ME Research achieve so much.
If you are new to our site, we extend a warm welcome and an invitation to join our efforts to support Invest in ME Research through the next phases of their vitally important work on developing a UK Centre of Excellence for ME for biomedical research and treatment of Myalgic Encephalomyelitis.
What’s been achieved over eight years?
ME set as a disease target on world-class Norwich Research Park
4 PhDs funded by Invest in ME Research
Science papers published
First two crowdfunded PhDs graduate 2019
(Dr. Daniel Vipond, QI and Dr. Fane Mensah, UCL)
Medical students intercalate in research funded by the charity
International research and medical education collaborations
The above mentioned in two Parliamentary debates on ME
GP Fellowship Scheme
Work underway for 2020 trial of FMT as a treatment for ME
A recap of the story so far, updates, and what’s next…
Let’s Do It for ME is an awareness and fundraising campaign launched July 2011 by severely ill patients, house/bedbound. We met on Facebook and wanted to do something positive and practical to support the proposal by Invest in ME Research to establish a Centre of Excellence for ME based at Norwich Research Park and working in collaboration with other researchers in UK and internationally. NRP has all the facilities needed for such a centre; a university, medical school, university hospital, as well as the relevant scientific institutes and genome analysis centre.
Invest in ME (the charity transitioned to the name Invest in ME Research over the next few years) published their proposal for a UK Centre in May 2010. Less than a year later everything was in place for plans to begin at Norwich Research Park except for a local specialist doctor qualified to examine and diagnose patients with ME.
We decided to crowdfund £100k to enable the programme of biomedical research to get underway. We succeeded thanks to brilliant support from fellow patients around the world and many of their friends and families! Some of those early supporters are pictured in the mosaic image below. We enlisted Professor Let’s Do It for ME Bear to help us keep count.
The University of East Anglia issued a press release in 2014.
The focus of the research is the role of infection and the immune system in ME, including whether autoimmunity plays a role.
The starting point is the gut as the site of most of the immune system, specifically microbes residing in the gut, and whether microbes cross the gut wall into the bloodstream triggering an autoimmune response.
ME is classified as an organic neurological disorder (WHO ICD-10 G93.3). Alterations in the gut microbiome and dysregulation of the gut-brain axis have been found in several diseases such as Parkinson’s and Alzheimer’s.
Professor Simon Carding IIMEC14 2019
Leading the work on ME at Norwich Research Park are Professors Tom Wileman and Simon Carding, joined by 4 PhD students to date.
The researchers decided to target severely ill patients and have worked extremely hard through the whole process of initiating ME research at Norwich Research Park, a great deal of planning, extensive literature review, administrative procedures, a lengthy process in itself, before taking the first samples from patients in 2014 to study in the lab.
The team engage in lengthy round trips to London and Surrey to obtain samples at home visits to patients under the care of specialist Dr. Amolak Bansal. To meet ethics requirements and also to ensure patients meet the selection criteria, a clinical specialist is required. As there were none in Norwich, Dr. Amolak Bansal kindly stepped in as the clinical consultant.
The team also face extreme temperatures for ME science!
The pioneering Phd student engaged to work on the foundation study investigating a role of leaky gut and the intestinal microbiota in the pathophysiology of ME formally graduated July 2019 and his metabolomics paper based on his PhD work has been submitted for publication. Congratulations Dr. Daniel Vipond!
Medical education is another important element in the Invest in ME Research Centre of Excellence model.
ME either doesn’t feature on medical school curricula or is mistakenly taught as a common psychosomatic condition. This leaves newly qualified doctors at a loss when faced with ME patients in the real world.
Working with Norwich Medical School, the charity introduced a scheme for medical students to spend an intercalated year working
on the research funded by the charity.
Dr. Anthony Komaroff cited a paper by medical students (now qualified doctors) Naveena Navaneetharaja and Verity Griffiths at the NIH research conference in Washington April 2019.
Dr. Ian Gibson was instrumental in supporting Invest in ME Research in their plans to establish a Centre of Excellence. Professor Ian Charles, Director of the Quadram Institute, a brand new building on Norwich Research Park where the ME research is now located, is also enthusiastic about the prospects and has presented at the charity’s conferences.
“The development of this new centre, together with the other expertise and facilities located at the Norwich Research Park, puts it in a very good position to lead a UK and European Centre of Excellence for biomedical research for M.E. to provide possible prevention and solutions.”
Professor Ian Charles, Journal of IiME Abstract 2015
BBC Look East has so far screened two excellent reports on the Norwich ME research, and the latest update in The Link, Norwich Research Park’s magazine, is in the Spring 2019 issue.
Carding Lab and QI colleagues are proactive in raising awareness and funds for Invest in ME Research. They braved the Chilli M.E. Challenge in 2015. Watch out for their second World Shirt Day next year!
By July 2019 the total raised for Invest in ME Research for the biomedical studies designed to find cause/s and treatment/s for ME is £900k!
This amount includes a generous pledge by the Hendrie Foundation to help Invest in ME Research fund a UK clinical treatment trial.
It also includes funding of B-cell studies (also supported by Hendrie Foundation) undertaken at UCL by PhD student Fane Mensah with Dr. Jo Cambridge. This work was initiated as Invest in ME Research planned to fund a trial of the B-cell depletion drug Rituximab, but is also a valuable contribution in its own right. Fane’s paper on the initial B-cell study was the first of the Invest in ME Research funded PhD students to be published (read more on the charity’s research blog) and has his PhD viva 1st August 2019. Good luck Fane!
UPDATE: He did it! Congratulations Dr. Fane Mensah!
Fane Mensah at IACFS 2016 USA conference in USA with the Haukeland ME research team
A UK Rituximab trial did not go ahead as the results of the large multi-centre double-blind placebo-controlled Phase III trial in Norway failed to show differences between the drug and placebo group to justify further trials. Dr. Fluge’s presentation at the 14th Invest in ME Research Conference #IIMEC14 in May 2019 on the Rituximab and Cyclophosphamide clinical trials is on YouTube.
What’s next?
Professor Simon Carding IIMEC14 2019
In his presentation at the 14th Invest in ME Research Conference #IIMEC14 in May 2019, Professor Carding announced plans underway to start a clinical trial of faecal microbiome transplantation (FMT) at Quadram Institute in 2020.
Invest in ME Research has been able to pledge half the £871k estimated cost (including the Hendrie Foundation pledge for a UK clinical trial) so £435k is still needed and that is where they need your help again if you feel up to the challenge!
The trial brings all the Centre of Excellence elements together and involves a lot of interesting work including technology, collaboration and new outcome measures to take things forward.
Professor Simon Carding IIMEC14 2019
Here’s our web page about the trial.
We’ve created a dedicated page for donations to the FMT trial on Wonderful, an entirely fee-free fundraising platform so 100% of your donations go direct to Invest in ME Research.
We also have a page on JustGiving.
As ever, we know many of you will create your own fundraising pages or offline fundraising initiatives for the FMT trial, so please contact us if you’d like us to feature your fundraiser.
Money is tight for many of us long-term ill so if you’re able to share links to help spread the word that is also much appreciated.
Watch out for chances to simply vote for the charity in funding award contests and other ways to raise funds for free.
Help fund an FMT trial? Let’s Do It!
And there’s more…
UK may leave the EU but Invest in ME Research and the Centre of Excellence work remains firmly connected to Europe.
Invest in ME Research is a founding member patient organisation of the European ME Alliance, which joined the European Federation of Neurological Associations and formed the European ME Research Group in 2015 and the European ME Clinicians Council in 2019.
Prof Carding also announced at the conference a new GP Fellowship scheme and a joint UK-Sweden (European ME Research Group) PhD studentship. Read more about all these initiatives in the June 2019 Invest in ME Research newsletter.
Dr. Vicky Whittemore of the US NIH Institute for Neurological Disorders and Stroke (NINDS) has been involved with the London conference events in recent years. She said at a previous US conference that she liked what Invest in ME were doing in UK. NIH has subsequently funded three Centers of Excellence in US and hosted a Thinking the Future meeting in Washington. Newsletter here.
Daniel Vipond represented Quadram Institute and Invest in ME Research at the NIH researcher meetings in Washington.
Accompanied by Carding Lab supervisor, Let’s Do It for ME Bear!
This is just a snapshot of the past eight years and focusing on the Invest in ME Research Centre of Excellence work.
They do so much more besides in terms of advocacy and campaigning for biomedical research and medical treatment.
Their work, the Centre and the crowdfunding was raised by several MPs in recent UK Parliamentary debates on ME.
Even well funded diseases rely on substantial donations from the public to carry out research so even as the charity succeeds in mainstreaming ME research they will need support from donations, sponsorship and fundraising until their goals are met.
When you consider what’s been achieved by a small volunteer-run charity on a tight budget in a relatively short time, it’s nothing short of amazing!
But then they have always stressed the urgent need to make rapid progress after decades of neglect of ME patients.
Once again, please know that we are enormously grateful to everyone supporting our campaign to help Invest in ME Research achieve their goals, too many to mention here but you know who you are and please spread word to bring new friends on board.
You can take a look at many of the 2019 fundraisers. Georgina and Phoebe are the latest. On Sunday, these two intrepid 13 year olds kayaked 26 miles (1 extra mile than planned) in torrential rain and challenging circumstances to say the least, after weeks of training as total novices!! They did this to help raise awareness and funds for the charity’s biomedical research as Georgina’s sister was struck by ME aged 14. You can support them on Wonderful here.
On Saturday, Steve Martin takes part in the Cleveland Steelman event – Swim 2000 metres, Cycle 58 miles, Run 20k. He has already run the Greater Manchester Marathon and the London Marathon to raise funds for Invest in ME Research in support of our very own Paul Kayes and other sufferers. Not surprisingly Steve is a little nervous ahead of this event and is carrying a shoulder injury, he is however spurred on by the generosity of his friends and family who have sponsored him.
Thank you so much!!!
Please bear with as we proceed to update our other web pages after eight years of doing it for ME! Any questions, please contact us.