Invest in ME Research pledged £435,000 towards the FMT trial earlier this year, so this new pledge represents an increase, thanks to the efforts of the charity and their supporters, including patients, carers, parents, friends and families affected by this disease. On their page describing the recent Centre of Excellence projects, IiMER write,
“The efforts of our supporters are exemplified in the Let’s Do It For ME campaign – started by three severely affected patients from their homes. They have enlisted friends and families to join with Invest in ME Research to create a grassroots movement to fund biomedical research into the disease, and thereby compensating for the meagre offical funding that has been given to research into ME over the years.
Invest in ME Research will now have funded or part funded five PhDs performing research into ME and working in partnership with researchers to initiate a foundation of high-quality research in one of the largest and most prestigious research parks in Europe.” Read more: investinme.org/pr01-Dec19.shtml
Together we have helped raise and pledge over £900,000 for Invest in ME Research since the Let’s Do It for ME campaign launched in support of the charity’s plan to establish a UK/European Centre of Excellence for ME.
This includes a hugely generous pledge to the charity from The Hendrie Foundation towards a clinical treatment trial and their substantial donation to the B-cell ME research performed at UCL. We are enormously grateful to the foundation and to everyone supporting the development of the Centre of Excellence for ME and the ongoing research there.
Thank you all so much for supporting Invest in ME Research!
Thanking You on 8 Years of the Let’s Do It for ME Campaign
Reposted from08/08/2019 Invest in ME Research newsletter. Click here for their latest and past issues or to join the mailing list to receive the charity’s free e-newsletters by email.
Invest in ME Research has been highlighting the development of a Centre of Excellence for ME and its opportunities for some years. We are pleased that the work the charity has put in to form the foundations of research has progressed slowly but surely thanks to our supporters who believed in our strategy and supported our plans. More and more are gradually becoming aware of the foundations that have been laid to make sustainable progress in research and treatment of ME.
There are many areas of life where unsung heroes make sacrifices in order to make progress – never desiring recognition or fame or glory for themselves – but just trying to make a difference.
Let’s Do It for ME (LDIFME) is an awareness and fundraising campaign launched in July 2011 by severely ill housebound or bedbound patients. The team 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.
LDIFME have recently celebrated their eighth year and we wished to acknowledge their efforts and achievements – these selfless, unsung heroes who are and have been a credit to people with ME and their families and carers.
The LDIFME team has composed a summary of some of the work performed and the achievements realised over the last eight years.
We wish to thank the LDIFME team and all the supporters of every campaign, every fundraiser, every letter of support, every contribution made to this great grassroots movement- which has made so many innovations over the years to make progress in research, treatment and perception of ME.
Because of their efforts we now have a real possibility to make progress and it is right before us, having already established the following -.
Thank you LDIFME and our supporters for your wonderful efforts.
A UK/European hub for biomedical research into ME
A clinical trial which will raise the profile of ME and achieve scientific objectives
A GP fellowship to educate GPs and create champions in clinical care for people with ME,
PhD students introduced to research
Medical students involved in research
High-quality biomedical research from top researchers in the leading European research park, complete with university and university hospital,
A European ME Clinicians group established and working
A European ME Researchers group forming
International research Colloquiums bringing researchers together.
International ME Conferences that allow researchers, clinicians, patient groups and carers to interact and network.
All this achieved by IiMER, LDIFME and our supporters ……. it is already there, just needing funding to maintain.
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 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.
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!
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.
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.
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.
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.
We want tests to enable accurate diagnosis and effective medical treatments established for Myalgic Encephalomyelitis (ME).
ME is a chronic disease involving muscle, brain, spinal cord, and dysfunction of immune, gastro-intestinal, endocrine, and cardiac systems. For more about ME see IiMER Awareness Leaflet and FAQs about ME.
Let’s Do It for ME awareness and fundraising is fully inclusive of age and illness severity, from the most severely ill supported by carers, to fit and healthy friends and family, our wonderful willing wellies!
We’ve had sponsored silences, screen-free weekends, readathons, sleepathons, through to some pretty extreme challenges, such as Mike Shepherd’s North Pole Marathon. You name it, Invest in ME Research supporters have probably done it!
Click on the images in the grid below for ways to take part in or to support May ME Awareness 2019 in aid of Invest in ME Research charity.
There’s also a page for May 2019 fundraisers here.
If you’re only able to share links that is still much appreciated.
We are severely ill ourselves but aim to update throughout May 2019 so please contact us with anything you’d like added or highlighted.
Until 17th May you can nominate Invest in ME Research for a Movement for Good donation of £1,000.
Please email Invest in ME Research directly at firstname.lastname@example.org for help with other awareness and fundraising aids, such as the charity’s T-shirts, wristbands, info materials, collection boxes etc.
To support our awareness you can also buy a range of products, such as our famous bear, with the Let’s Do It for ME and other logos and slogans from our online shops with 100% seller profit paid directly to Invest in ME Research. Spreadshirt’s offering free delivery til 7th May.
You can also buy the new book of poems 31 Days in May by The French Femme or simply share the poems she posts each day of the month.
A House of Commons debate on ME (Myalgic Encephalomyelitis) will take place next Thursday afternoon 24th January 2019, secured by Carol Monaghan MP for Glasgow and North West.
As a supporter of Invest in ME Research, Paul Kayes has sent a letter to his MP which you are welcome to copy or adapt for your MP.
Invest in ME Research has since announced a new initiative in remembrance of Anne Örtegren, to establish the European ME Clinicians Council, a network of clinicians to support each other and work together.
To find your MP’s contact details, put your postcode in the box on this page.
I’m writing to make you aware of the following backbench debate in the House of Commons. Carol Monaghan MP has managed to secure a backbench debate for next Thursday, 24th of January. ‘Motion relating to appropriate M.E. treatment’
I’m asking for your support by attending the debate on behalf of myself and the many other sufferers of Myalgic Encephalomyelitis (M.E.) in your constituency and to give you more information relating to the issues that will be raised in the motion.
The substantive motion for the debate MP Carol Monaghan has secured is:
“That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of ME, supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of ME and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting ME families to unjustified child protection procedures.”
1. Increase funding for biomedical research into M.E. this should not be difficult to achieve given that very little funding has been given for biomedical research into M.E.
I would fully endorse, support Invest in ME Research (IiMER) who currently have 4 Phd students researching M.E. and initiated the development or a Centre of Excellence for ME in Norwich Research Park based at the Quadram Institute. So far patients and their families have crowdfunded in excess of £870k in support of IiMER, which clearly demonstrates the faith patients have in IiMER.
2. Invest in ME Research and their supporters have requested that NICE remove the use Cognitive Behavioural Therapy and Graded Exercise Therapy as treatments for people with M.E. Both of these treatments have been found to be harmful to M.E. patients causing relapse and permanent damage to the patient and their chances of recovery.
You will hopefully be aware that the the current NICE guidelines are under review by NICE and that the patient community have grave concerns about the large number of biopsychosocial proponents that have been selected for the GDG review panel.
3. Invest in ME Research have information packs for GPs and Medical staff, but lack funding to deliver this to all GPs, they also plan that the Centre of Excellence in Norwich will be used for training of medical personnel. They have also initiated the formation of the European ME Clinicians Council, a network of clinicians to support each other and work together.
4. In order to increase education amongst healthcare staff and facilitate collaboration between international researchers Invest in ME Research organises annual international research colloquiums for scientists and international public conferences that attract delegates from twenty countries every year.
5. I personally hear about the devasting effect that the lack of treatment and understanding has on families with children with M.E. I know IiMER have been involved in helping many parents who encounter ignorance as to the nature of the illness and have been subject to unjustified child protection procedures as have Tymes Trust and Dr Nigel Speight paediatrician specialising in M.E.
I look forward to hearing from you as a matter of urgency as the debate takes place next week.