A History of Invest in ME Research
Some moments over the years for Invest in ME/Invest in ME Research
Who We Are
A SHORT HISTORY of IIMER
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 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.
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.
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.
Invest in ME celebrated its tenth year as a charity.
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
We also made an analysis of the Institute of Medicine (IOM) “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness” report.
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.
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.
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.
The charity made submissions for the NIH Pathways to Prevention Report (P2P).
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.
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.
We also organised our third international research colloquium in order to encourage ME research.
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
We wrote to the Lancet about the PACE trial and continued to argue that flawed theories should not be funded by the public
An example was the premiere screening in the UK of a film about ME, Voices from the Shadows, which allowed 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.
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.
Our CofEforMEproposal 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.
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.
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.
The charity began its Biomedical Research Fund to allow donations to research projects to be made.
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.
Invest in ME submitted responses to the published 5-year plan for CFS (ME) from the USA Centres for Disease Control.
The charity also submitted responses to the UK All Party Parliamentary Group on ME.
From 2008 Invest in ME began participating in the All Party Parliamentary Group discussions and sent in many submissions.
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.
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.
IiME started producing the Journal of IiME, a mixture of science, education and politics
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.
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).
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
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
In 2006 Invest in ME (later Invest in ME Research) was formed as a charitable trust
First Invest in ME International ME Conference held in Westminster, London - IIMEC1
First Invest in ME International ME Conference DVD produced/ IIMEC1
2005 September Invest in ME
Invest in ME was formed as a group by patients and carers of children with ME.
What is ME
ME stands for Myalgic Encephalomyelitis.
Benign Myalgic Encephalomyelitis (ME)/Post Viral Fatigue Syndrome (PVFS) is a multisystem, complex, acquired illness with symptoms related mainly to the dysfunction of the brain, gastro-intestinal, immune, endocrine and cardiac systems. ME/PVFS has been classified as a neurological disorder in the World Health Organisation's International Classification of Diseases since 1969 (ICD 10 G93.3). Since 1992, the term "Chronic Fatigue Syndrome" (CFS) has been included in the Alphabetical Index and indexed to G93.3.
The Chief Medical Officer's Report on the subject of CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) issued in January 2002 recognises that "CFS/ME should be classed as a chronic condition with long term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease
To date there is no known specific medical diagnostic test to determine or confirm a correct diagnosis nor is there any specific treatment for this condition.