#IIMEC15: A 2020 2021 VISION for ME

SUSTAINING and DEVELOPING the FOUNDATIONS of RESEARCH into ME - Take II

Background

This time last year we were preparing for the 2020 International ME Conference Week events - presenting "A 2020 Vision for ME".
Unfortunately, a 2020 vision for ME did not foresee the worldwide effects of a pandemic that would affect so many lives.

The ME Conference Week events for 2020 were disrupted by the Covid-19 pandemic so much of what was planed for 2020 has been moved to 2021.

There is no doubt that the pandemic has changed research priorities - especially in the short to medium term - and funding decisions, resources and information have been altered, all of which will affect ME in some way.
However, we will attempt to continue our strategy and adapt as necessary to the varying Covid-19 situation.

Invest in ME Research (IIMER) is an independent UK charity facilitating and funding a strategy of high-quality biomedical research into Myalgic Encephalomyelitis and promoting better education about ME. The charity is run by volunteers - patients or parents of children with ME. No salaries, no careerists, no government funding, not controlled by outside influences - but with wonderful supporters.

In 2021 we will be holding our fifteenth annual international ME conference – IIMEC15 – and our tenth annual international Biomedical Research into ME Colloquium.
We will also be initiating a new event for clinicians and a young/early career researcher workshop.

After fifteen years it may be so that the charity is often only recognised for these events – with little awareness of what else the charity and supporters are doing, and has done and continues to do. But as the saying goes - " ....... a hundred acorns are sown in silence by an unnoticed breeze."

After fifteen years of constant work the acorns have been accumulating - building blocks for change.

At this time of year, when opening registration for the International ME Conference Week events that are now firmly fixed into the calendar, we should mention a few of the things the charity and its supporters are achieving and in order to maintain this progress.


Achievements

Apart from the day-to-day supporting of patients and families dealing with the effects of ME in various ways and advocating on behalf of ME patients we have made real progress in setting up key building blocks that have created sustainable and permanent change in how ME is researched and treated.

IiMER is finding, funding and facilitating biomedical research into ME in a variety of ways and is focused on -

  • creating solid foundations for a research programme on ME
  • solving scientific questions relating to ME
  • finding treatments that are based on research evidence
  • raising standards on all levels of patient care
  • facilitating European and international collaboration

Our current projects include the following -

The charity's proposal for a Centre of Excellence for ME is possible to achieve and it has set a target which can be reached if enough support is obtained.

Our plans to develop a Centre of Excellence for ME have captured the imagination and is clearly seen as the way ahead - and good progress on this foundation has been made, although with more resources the charity could expedite this for the benefit of all patients.
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A clinical trial which will raise the profile of ME and achieve scientific objectives. In July 2020 the charity has signed the contract for a clinical trial at the Quadram Institute.


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A new and visionary scheme to address the issue of expertise amongst GPs. This scheme aims to educate GPs and create champions in clinical care for people with ME – that will continue as a regular feature of the Centre of Excellence.


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PhD students introduced to research (a strategy of 3 per year for 5 years) as part of a five year plan to implement the Centre. So far the charity has funded five PhDs.
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A scheme for medical students to be involved in research into ME - at the Centre which allows them to have a sound knowledge of ME that will influence their peers and take that forward in their careers.
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High-quality biomedical research from top researchers in the leading European research park , complete with university and university hospital


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A European ME Research Group formed with collaboration and working together as themes - themes that have been the essence for our Colloquiums - with real international cooperation forming that can only lead to a better future for patients than would otherwise be the case.


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A European ME Clinicians Group was established and again met prior to the pandemic disruption - emecc.org


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European research collaboration in the European ME Alliance (EMEA) with discussions taking place between UK, Sweden, Finland, Iceland, Denmark, Spain and Holland.
Joint studentships and exchanges being funded by IiMER and our partners and European research also funded.


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International Biomedical Research Colloquiums bringing researchers together. The research Colloquiums now attract researchers from around the world to a meeting where they are free to discuss, share ideas and collaborate.


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International ME Conferences that allow researchers, clinicians, patient groups and carers to interact and network.


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The establishment of the Thinking the Future for ME - Young/ECR Researcher network and conference began as an idea in 2018 and continued in 2019 - both in London and in Washington. The NIH worked with IiMER to facilitate this international network and even provided funding for twenty young US researchers to come to London for TtF2019.


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For 2021 IiMER are initiating an interesting new idea in creating an international clinicians meeting in London with the newly formed European ME CLinicians Council (EMECC) joining with the US Clinicians Council formed by Mary Dimmock and Dr Lucinda Bateman. This will bring together the two groups to facilitate a poweerful instrument for change.

The charity has not forgotten the need for advocacy and regularly comments and acts on issues affecting ME.
In the recent UK parliamentary debate on ME, Invest in ME Research produced a document which summarised the status of ME. It also laid out a bold vision for research - proposing that £20 million be allocated every year for five years to kick-start biomedical research and support the foundations that this small charity has laid.
Other topics -

The following documents are recent statements from the charity on major issues.

Debate January 2019

Some of the issues relating to the UK parliamentary debate on 24th January 2019 and a one page summary of recommendations

Status of ME 2018

A status of ME document produced by the charity for the parliamentary meeting in 2018 that lead up to the 2019 parliamentary debate in UK

NICE Commentary

Comments on NICE guidelines review and previous correspondence between the charity and director of NICE guidelines development

Executive Summary

An Executive Summary for MPs and Others - - has been produced which describes the Centre of Excellence proposal and development status.


An interesting summary of the work of the charity and supporters was provided by the amazing Let's Do It For ME (LDIFME) team in this article - click here

To treat ME we need the infrastructure as well as funding. Sparse resources exist so cross-European projects are necessary. Europe has the resources to build this capacity and resources.

Progress will not come from soundbites in the media or from letters to parliament or assemblies.
We have to create a foundation for sustainable research and we need to recognise that we are forced to start this ourselves in the absence of official support. This is what IiMER and our supporters have done.

We invite all to look at the above – what is and has been developed and initiated by the charity and our supporters – and help us build on these elements which will facilitate rapid progress in improving research and treatment of ME.


TEN Colloquiums, FIFTEEEN Conferences

We have released the videos from all of our the past international ME conferences to mark the fifteenth anniversary of our first conference (click here).
It is quite interesting to listen to the comments made fifteen years ago by some presenters and compare to the situation we have today - with research and education about ME.
One could be forgiven for thinking that nothing has changed.

Yet the charity has been attempting to move things forward over the years, as we see from the themes of the last fourteen conferences -


In 2021 IiMER will be organising the largest biomedical research into ME Colloquium in the world. We will organise Europe’s largest international ME conference open to the public - our fifteenth international ME conference that regularly brings together people from twenty different countries from around the world.
We will organise our third (and the fourth in all) Thinking the Future – Young Investigators International Conference to build a network of young and early career researchers.
Inn 2021 we will hopefully bring together a new International ME Clinicians Conference with the newly formed EMECC involved with the US clinicians.

Philanthropy is about 'giving' - not just in terms of fundng but also in non-monetary aspects, such as time, ideas, raising awareness of what the charity is trying to do, or being a volunteer.
We are justifiably proud of what our supporters have achieved and they deserve recognition for all their support and efforts to bring change to the landscape of ME research and awareness.

Due to imaginative and positive support such as the Let’s Do It for ME campaign and thanks to dedicated supporters the charity prepares for 2021 and beyond with good foundations for progress based on the efforts of patients, carers and their families who have supported us since 2005.

Welcome to London - welcome to #IIMEC15.

Kathleen McCall

Chairman Invest in ME Research

Contact Invest in ME Research

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