A History of Invest in ME Research
Invest in ME Research (IiMER) celebrates its twentieth year as an independent UK charity in 2026 - twenty years of
facilitating and funding an international strategy of high-quality biomedical research into Myalgic Encephalomyelitis
(ME, sometimes referred to as ME/CFS), and promoting better education and information about ME.
Twenty years of raising awareness
of the effects of the disease on patients
and families and educating and advocating to overcome ignorance and misinformation about the disease.
20 Years of Investing in ME Research
2005: Invest in ME was formed as a group by patients and carers of children with ME.
2006:
2006 January
Severe ME stories highlighted by IiME in cooperation with the media. We worked with ITV Meridian and`
Norway’s Puls programme to allow their excellent reporting on severe ME in the UK and Norway
2006 May
In 2006 Invest in ME (later Invest in ME Research) was formed as a charitable trust
2006 May
First Invest in ME International ME Conference held in Westminster, London - #IIMEC1
2006 July
First Invest in ME International ME Conference DVD produced/ #IIMEC1
2007:
2007 May
IiME hold a 2-day international conference in London - the second organised by the charity - IIMEC2 Dr Ian Gibson was joined by another Norfolk MP Mr Norman Lamb who opened the second day.
2007 May
IiME started producing the Journal of IiME, a mixture of science, education and politics
2007 May
Invest in ME contributed to the review of the UK NICE Guidelines (both the draft version and the final version), producing a 52-page response that followed our 38,000-word response to the draft guidelines.
2007 June
The charity visited the CMO’s office to meet with Dr Bill Kirkup, Deputy CMO at the time. We requested that ME be treated as a notifiable illness in schools (subsequently rejected).
2007
Invest in ME took over distribution of the Canadian ME/CFS Guidelines in the UK on a not-for-profit basis.
The guidelines are now a basic requirement for any service model being developed for diagnosis, management and treatment of ME
2008:
From 2008 Invest in ME began participating in the All Party Parliamentary Group discussions and sent in many submissions.
2008
The charity was instrumental in forming the European ME Alliance in 2008 –
a grouping of charities and patient organisations within Europe who came
together to tackle issues around ME affecting European patients and their families.
2009:
2009
In 2009 the charity published and distributed the unique book on ME, Lost Voices from a hidden illness, which was
compiled by Natalie Boulton and highlighted the situation of those severely affected by ME and their families.
This book has been ordered by patients, support groups, healthcare staff and researchers in twenty countries.
It was also ordered for inclusion in the syllabus by Chicago University, USA.
2009
The charity began its Biomedical Research Fund to allow donations to research projects to be made.
2009
IiME organised and hosted the fourth annual Invest in ME International ME conference in London in 2009.
The focus of this conference was Severe ME, an attempt to raise more awareness of patients with severe ME -
a group of patients who were not represented in research trials and completely misunderstood by healthcare
services.
2009
Invest in ME submitted responses to the published 5-year plan for CFS (ME) from the USA Centres for Disease Control.
2009
The charity also submitted responses to the UK All Party Parliamentary Group on ME.
2010:
2010
In 2010, tired with continually sitting in meetings with the NHS to discuss services for ME - yet with no
progress being made, Invest in ME formulated a proposal for biomedical research to be based at a research and examination
facility in the Norwich Research Park in Norfolk – a Centre of Excellence for ME.
2010
Our CofEforME proposal envisaged performing translational biomedical research into ME by researchers at the
university using a patient cohort which had been diagnosed by an experienced clinician using appropriate diagnostic guidelines.
2010
IiME organised and hosted the fifth annual Invest in ME International ME conference in London. This had the
theme of “A New Era in ME/CFS Research” to reflect the new awareness and acceptance that only biomedical research will
allow treatments and cures to be
found for ME. The 5th IiME conference (IIMEC5) was as usual CPD accredited and a platform for biomedical research.
2011:
2011 May
From 2011 we were joined and supported in our quest for a Centre of Excellence with a new and visionary
fundraising initiative – Let’s Do It For ME - formed by three house/bedbound patients. Together we quickly raised almost £10000
for our foundation project to study the gut microbiota in ME patients. For the charity this was a great deal in terms of the
usual budget.
2011 May
The charity organised the first Biomedical Research into ME Colloquium in 2011 – named the Corridor Conference –
bringing together researchers from different continents to discuss and share knowledge about ME – and also some researchers
new to the ME field. BRMEC1 was a new and unique addition to IiME’s conference events.
2011 May
The 6th IiME conference (IIMEC6) was the first time that Professor Mella and Dr Fluge presented on ME/CFS in public.
They made a lasting impression on us and we knew straight away that these two fine Norwegian gentlemen and their research
were something special and worth keeping an eye on. We are honoured to have had the chance to follow their progress year
after year.
2011
For the first and only time the British Medical Journal (BMJ) accepted an invitation to the conference and their
representative participated in the panel discussion.
2011
The charity arranged a special meeting of the APPG in parliament and took along a number of our researchers who
we had brought to London for the IIMEC6 conference. This allowed MPs to be given true facts about the disease and the
research required.
2011
Invest in ME continued to tackle the unjust media portrayal of ME and made an official complaint to the Press
Complaints Commission after a series of unsubstantiated and biased articles appeared in major newspapers in a seemingly
coordinated media attack on sick and vulnerable patients. Although, predictably, the PCC did not rule in the charity’s
favour the bias and inaccurate reporting in these misleading and orchestrated articles and the unprofessional and flawed
editorial control were clearly shown by Invest in ME to be present in the media
2011
We wrote to the Lancet about the PACE trial and continued to argue that flawed theories should not be funded
by the public
2011
An example was the premiere screening in the UK of a film about ME, Voices from the Shadows, which allowe
d a debate to be initiated about past treatment of ME patients with a message relating to the damage being inflicted on
families by flawed and biased research. Invest in ME organised the first two showings – one in Norwich and one at the
British Library in London. In Norwich the Mayor of Norwich attended along with the media, patients, and family members.
In London the British Library provided an imposing setting for a serious debate on this disease which the film allowed to
be initiated.
Dr Nigel Speight spoke at the screening on a panel which included a local London councillor.
2012:
2012 May
In May 2012 our seventh Invest in ME International ME CPD accredited Conference (IIMEC7) took place in London along with the Clinical Autoimmunity Working Group (CAWG) which was a 2-day research meeting, the BRMEC2 Colloquium, that IiME organised in collaboration with the Alison Hunter Memorial Foundation of Australia – working together for over six months on designing this research meeting. The CAWG was an extraordinary meeting with world-renowned experts in different fields, not just ME and laid the foundations for our future colloquiums.
2012
At the end of the 2012 conference we announced our intention to try to set up a clinical trial in the UK of rituximab for ME patients.
2013:
2013
As part of our strategy to initiate high quality biomedical research into ME that looked at causality of ME the charity was finally able to fund its first research project in 2013, the gut microbiota study at IFR/UEA involving a three year PhD studentship. This followed many years of effort and fundraising and was greatly assisted by the charity’s advisor Dr Ian Gibson.
2013
The charity and its supporters contributed to the appeal by the Australian Alison Hunter Memorial Foundation and Australian PHANU for a flow cytometer to be purchased to assist research there.
2013
We also organised our third international research colloquium in order to encourage ME research.
2013 May
The charity organised and held its 8th annual international research conference – with the sub-title of
Mainstreaming ME Research – reflecting our view that ME was now entering the mainstream research activities being considered by research establishments. As part of the charity’s attempt to mainstream ME research into research agendas and discussions of major organisations we invited the chair of the Royal College of GPs to speak at our 8th International ME conference
2013 June
Following the colloquium/conference the charity announced the beginning of its rituximab clinical trial
project. We also announced that our advisor on the project would be Emeritus Professor Jonathan Edwards of UCL.
2013
During 2013 the charity organised a video conference call with Dr Martin McShane - NHS Commissioning Board
Authority, Director – in an attempt to influence DoH policy on ME. In the discussion were the parents of a severely affected young adult who had themselves been victimised by the social services due to complete ignorance about ME.
2013
After a year of attempting to gain interest in setting up a clinical trial of the drug rituximab,
following promising results from the Norwegian Fluge et al. study, the charity initiated a project for the trial and related B cell research in association with University College London.
2013
We began a fundraising campaign with the help of the Let’s Do It For ME team of volunteers. An initial target amount of £350 000 was set and we thus started a crowdfunding project into ME which had not been tried before in the UK.
2013
We were privileged and grateful to The Hendrie Foundation who agreed to pledge funding toward the rituximab trial. This allowed patients and carers renewed hope in tackling this disease and is now an international project – both in the crowdfunding aspect and in the research itself.
2013
To allow the promising B-cell study into ME to continue, and as part of the overall research portfolio that Invest in ME has with UCL and the consultants from Epsom and St Helier University Hospital and UCLH, the charity
committed itself to fund a new PhD studentship at UCL that began in 2015.
2014:
2014 May
The charity organised and held its 9th annual international research conference – with the sub-title of Synergising Research into ME – illustrating the objectives of the charity in organising and facilitating international collaboration in research into ME.
2014 May
The charity also formed an Advisory Board to help the charity plan a strategy for research and provide advice on what research to fund. We are very pleased to have renowned researchers from UEA, IFR, Oxford and UCL in our Advisory Board.
2014 Nov
The charity made submissions for the NIH Pathways to Prevention Report (P2P).
2015:
2015 Jan
We also made an analysis of the Institute of Medicine (IOM) “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness” report.
2015
2015 saw the fifth international biomedical research Colloquium and our tenth international ME conference. And both events were the best to date. A landmark achieved.
2016:
2016 May
We organised the sixth international biomedical research Colloquium and our eleventh international ME conference. And both events were the best to date. A landmark achieved.
Also the NIH were represented at the Colloquium an Conference by Dr Vicky Whittemore - who opened the events.
2016
Invest in ME celebrated its tenth year as a charity.
2016
Invest in ME Research was awarded a Big Lottery Awards for All grant to help publicise the Centre of Excellence for ME. A dedicated microsite was set up for the purpose of documenting and publicising the Centre of Excellence for ME - www.cofeforme.eu
2017:
2017 May
2017 saw the seventh international biomedical research Colloquium and our twelfth international ME conference. Both USA agencies - the CDC and the NIH - were represented at the Colloquium and Conference.
2018:
2018 Jan
IiMER wrote to Director of NICE guidelines, Professor Mark Baker, to comment onproposed NICE Guidelines review and use of CBT and GET. - Thinking the Future.
2018 May
2018 and the eighth international biomedical research Colloquium and our thirteenth international ME conference.
The charity also initiates a young/early career researcher symposium to establish a network of new researchers for biomedical research into ME - Thinking the Future.
2019:
2019 February
IiMER initiate the European ME Clinicians Council (EMECC) - to create a collaborative voice for clinicians treating people with ME.
The first EMECC meeting took place over three days in London.
2020:
2020 January
Invest in ME Research and The Quadram Institute arranged a Public Engagement Event in Norwich.
2020 January
IiMER organised a meeting of the European ME Research Group (EMERG) in Amsterdam, Netherlands.
2020 February
Then COVID pandemic affects everything.
2020 July
IiMER signs contract with the Quadram Institute for the FMT Clinical trial being performed in Norwich Research Park.
New Huge Investment in Biomedical Research into ME
2020 December
IiMER response to NICE Draft Guidelines for ME
2021:
2021 September
Transition from IiME to IiMER completed
2021 August - October
Letters and comments from Invest in ME Research on the NICE activities and decision-making performance following the sudden pause on publishing the final NICE Guidelines for ME
2021 June
IiMER contribute to European ME Alliance EU roundtable for ME ME/CFS in Europe - 1st Roundtable of European Stakeholders and Policymakers BRMEC10.
2021 June
Our tenth international Biomedical Research into ME Colloquium BRMEC10 was held as a virtual event.
Over 170 researchers were invited with over half of that number participating. BRMEC10.
2022:
2022 August
We have updated the Centre of Excellence for ME Executive Summary for MPs document and provided input and suggestions to the UKCRC in their workshop for delivery of ME services.
2022 May
The charity arranged the eleventh annual international Biomedical Research into ME Colloquium (#BRMEC11) and delegates from over a dozen countries participated.
2022 April
The charity arranged and chaired the European ME Alliance's webinar roundtable II on 8 April 2022 - entitled ME/CFS in Europe
2023:
2023 March
A full EMERG meeting took place prior to the 12th Invest in ME Research Biomedical Research into ME Colloquium at
the Wellcome Genome Campus in UK in May, with new members having joined.
2023 March
The charity and EMERG announced the resumption of the European young/early career researcher network - Young EMERG.
An additional event was announced for the International ME Conference Week for the Young EMERG group to meet.
2023 May
International ME Conference Week - with Young EMERG workshop, EMERG AGM, BRMEC12 Colloquium and IIMEC15 conference.
2023 September
Comment from UK charity Invest in ME Research (IiMER) on the Draft Interim Delivery Plan on ME/CFS
published by DHSC.
November 2023
A submission to the November 2023 APPG for ME
November 2023
Gibson Fellowship - The first fellowship for ME named after Dr Ian Gibson
November 2023
Our comments on participation in the the UKCRC research working group and the lack of any concrete actions or plan.
December 2023
IiMER Presents at NIH Symposium in Washington
December 2023
IiMER's second Fellowship announced - the 'LunaNova' Fellowship seeking to deepen our understanding of ME
and accelerate progress toward effective treatments.
2024:
April 2024
EMEA Pan-European ME&Patient Survey Results Published
May 2024
International ME Awareness Day
May 2024
Final UKCRC RWG Meeting
June 2024
International ME Conference Week in June
June 2024
WHO-Europe Support for International ME Conference Week and ME
2025:
May 2025
International ME Conference Week in June
2025:
November 2025
IiMER supports Young EMERG at the Young EMERG International ME Workshop in Vienna, Austria, and gives awards
to young European researchers to enable them to partiicipate.
2026: