Post-Conference Week 2023

The 12th Biomedical Research into ME Colloquium was possibly the best yet of the series of colloquia that were started in 2011, five years after we initiated the international ME conferences.
This year Invest in ME Research started late in preparations, unsure of the response from researchers following easing of covid restrictions. However, the team managed to bring together a good programme of interesting research and used the expertise of the European ME Research Group (EMERG) to chair sessions and bring in new expertise alongside the existing and increasing family of researchers that the charity has developed.
There was more interest from researchers than ever - despite this being our first to meet in person since before the pandemic began - justifying resources used/commitment given to make it work.
This year also, partly as an aid to help social distancing at the events, we used a new venue which had the added benefit of giving greater possibilities to improve and develop international collaboration amongst researchers, one of the charity's continuing and abiding objectives.
In this we feel we were very successful.

Our thanks to all of the #BRMEC12 Colloquium delegates from around the world coming together in a friendly atmosphere of 3 days/4 evenings of collaborative and productive discussions.
One of the comments that seemed to be echoed frequently amongst patients at the pre-conference dinner and the International ME Conference Day for Clinicians on 2 June was how approachable the researchers from our events were.
The charity was also able to facilitate a number of interactions between patients and clinicians and researchers.

Our thanks go especially to the speakers and our accomplished colloquium session chairs from the European ME Research Group (EMERG) and the newly formed Young EMERG.
Many new collaborations were formed - one of the advantages of focusing efforts on getting the right people together in a productive atmosphere.
Many of these collaborations may not come to fruition for a while but they were, nevertheless, generated by the ability to meet in pleasant surroundings and inspired with the atmosphere of this international meeting.

As one good friend and BRMEC12 delegate commented -
‘the agenda, speakers you chose, networking you encouraged & every detail helped us all meet new collaborators & have more hope that things are getting closer to answers’

Amongst some of the invitations to attend from the charity there was included one to the Norwegian Directorate of Health (Norges Helsedirektoratet). The situation for ME in Norway should be the best in the world but there are continuing issues with flawed policies being promoted.
So, we suggested to one of the EMERG researchers in Norway if we could assist by inviting such an organisation to the Colloquium as our guests to hear of the research that was being conducted and to mix with researchers.
Eventually we had four representatives from helsedirektoratet attending and we hope that this will prove beneficial to all people with ME and their carers in Norway, and ultimately to all patients in Europe.

We included the possibility of poster presentations also in the conference week events.
It was nice to see the young researchers contributing their work and it is clear there is talent and dedication amongst these young investigators that augurs well for the future.
Early career researchers from four continents attended.
We hope to produce a report from the colloquium and videos from the international ME conference for clinicians will be available as soon as production is completed.

Thanks to delegates at 15th International ME Conference - #IIMEC15 - for supporting the event by attending.
All through conference week the country was plagued with rail strikes and this contributed to delaying or preventing many from attending the event.
We can plan the weather but not rail strikes.

Our thanks to our sponsors for helping us in establishing this international week of events.
These events take a great deal of resources and efforts. The charity attempts to do everything it can without incurring costs - so all efforts in arranging, contacting, inviting and accommodating delegates is performed by the charity - no event company being employed.
So the charity is very grateful for whatever support is forthcoming - even moral support for maintaining these events.
At the international ME conference day Open Medicine Foundation also took a table alongside the IiMER and EMEA tables in the exhibition space.
The charity also arranged for a table for the European ME Alliance (EMEA).

To respect the hopes of our supporters we made the decision to try to stream the public international ME conference for them.
We had not had resources, including financing, to set this up in the run up to the event but eventually managed to find some way that could be arranged with the resources we had.
The team spent part of the night prior to the conference preparing to stream the event even though not entirely happy that we had been able to prepare thoroughly enough.
On the morning of the conference we completed preparations with the local AV team and then informed some of the researchers - and were surprised that there was not universal support to stream the event. However, we can understand why. So, in the interests of harmony, we had to make a snap decision and elected not to do this.
We had already made and funded plans to have a professionally filmed video of the presentations made.
The conference video will be available as soon as we can receive it and will be made available, for free, on our web site - click here

The Young European ME Research Group - #YoungEMERG group was formed and proved to be a great success https://www.investinme.org/emergecr-workshop202306uk.shtml

The Young EMERG group at the #YEMERG03 workshop was complemented with delegates from USA, Canada, South Africa and Australia.
The workshop also allowed for remote speakers and attendees as the time zone difference and costs prevented some from being present.
It was also interesting that the workshop attracted interest from others and more than one of the supervisors who were present for the BRMEC12 colloquium had wanted to go and sit and listen to their post-doc/PhD students when they presented.

The Young EMERG #YEMERG03 workshop had Dr Dan Peterson giving the keynote speech - providing decades of expertise to the early career researchers and young investigators https://europeanmeresearch.org/ecr-news0501.shtml
This was inspired by the charity talking to early career researchers and being concerned that none seemed to know much about, or be aware of the history of ME or of research and clinical expertise that had been accumulated by those who have been involved for thirty years or more.
This was a major gap that needed to be filled.
Now we are sure we will not be hearing "Who is Dan Peterson?" again.

Dr Vicky Whittemore from NIH gave insights into funding and careers for the #YEMERG03 workshop attendees and the Dr Luis Mendez from the European Research Council provided information on EU schemes for #ECR and young investigators

Our aim is to use the European @YoungEmerg group to form a part of an international group of early career researchers for ME.
To this end we have approached USA, Canadian, Australian, New Zealand & South African contacts to begin to set up/facilitate the collaboration of this international early career researcher network for

Since the meeting this has started to come into effect.
We will continue to support and develop this - with the NIH workshop in Washington planned for December
Now the community can see an international Early Career network for ME being set up with enthusiastic young minds becoming involved in biomedical research into this disease.
The future for research into ME.
This alone would be sufficient legacy from BRMEC12.

The European ME Research Group also held a planning meeting to develop applications for biomedical research into ME https://www.investinme.org/IIMER-newslet-20230301.shtml
We welcomed several new members to the EMERG group - from Germany, Denmark, Austria, Netherlands and Iceland - which now expands this group into a powerful organisation for research in Europe
The planning meeting was mainly concerned with finalising details of the EMERG application for EU funding for multi-site biomedical research projects with a set of work packages.
There had been an awareness of another application being formed elsewhere with some non-EMERG researchers who were colleagues of some EMERG members.
This would have been quite a myopic approach for applying for scarce European funding for ME.

So meetings were held to bring these applications together as it made no sense at all to have competing applications - especially where many of the participants in work packages were within EMERG or connected to colleagues of EMERG members.
It is hoped now that all of the discussions following BRMEC12 have resulted in agreement on one package.
The European ME Research Group #EMERG23 meeting consequently made it possible to agree on a single powerful European application for EU funding rather than multiple efforts & less chance of any success.
Common sense prevailing = patients benefiting
How refreshing is that?

During the intensive week of activity we even managed to squeeze in an informal European ME Alliance (EMEA) board meeting to discuss synergies and future plans in Europe to benefit patients.

As for the UK Centre of Excellence for ME in Norwich Research Park? Professor Simon Carding from Quadram Institute presented developments at the centre with new funding, more funding from IiMER and exciting new developments including announcement of a patient registry - allowing more people with ME to register interest in research.
All of this presentation will be on the video of the conference.

So a successful international ME conference week - and appreciation to all attendees who made this so friendly and productive
The charity made extraordinary efforts to plan and arrange these events despite having constraints and hurdles to overcome - both in resources available and with personal considerations of the trustees. However, the value is in the outcome and we are pleased that we have had so many positive comments from delegates.

But we never forget some of those we have lost and who played such a part in fighting for biomedical research into ME. The charity presented a tribute and a recognition at #BRMEC12 and #IIMEC15 events for some of those who are no longer with us.

From Invest in ME Research our overwhelming thanks to our supporters – without whom nothing would happen
One of the introduction slides showed a little of what the charity has achieved thanks to the support of some wonderful people who seek no celebrity status and rarely get recognised for their efforts.
Thank you.