Invest in ME Research April 2022 Newsletter

Welcome to the Invest in ME Research newsletter
for April 2022

REMEMBERING DR IAN GIBSON

It is now a year since Dr Ian Gibson passed away.
Especially poignant at this time of year, when IiMER traditionally arranges its international conference week to advance research and awareness for ME - a week of events in which Ian was always fully involved.
He was an inspirational and dedicated supporter for people with ME.

Read more

RESTORE-ME TRIAL LATEST

We are now moving into a phase where the RESTORE-ME clinical trial project is planned to be restarted, following the pause due to the pandemic.

As mentioned in other newsletters, due to modified MHRA regulations that were strengthened as the pandemic was beginning, changes were necessitated for the special facility being prepared for the RESTORE-ME clinical trial.
This work on the facility at the Quadram Institute is now underway.

We are not only looking forward to restarting the trial but have been in discussions regarding augmenting the trial with additional research, and hope to be able to describe these additional research initiatives in next month's newsletter.
We hope that this will lead to more investment in research into ME at the centre.

Read 2021 update

News from Rik Haagman

Rik Haagman is doing his PhD at Quadram Institute, funded jointly by IiMER and the University of East Anglia. Rik is the fifth PhD funded by IiMER.
He recently provided an update on his research project and includes a new development that supports IiMER objectives - European collaboration in research into ME.

As part of the ongoing collaboration with the Norwegian research team in Tromsø Rik will be heading out there for a period this summer - enhancing both clinical trials being carried out.

More can be see in the article via the link below.

Read more

11th Biomedical Research into ME Colloquium

The 11th Biomedical Research into ME Colloquium has been arranged for the 18 - 19th May 2022.
This will be a virtual event again this year due to the pandemic and uncertainty caused by other events.

The charity has been working with the European ME Research Group (EMERG) to plan the agenda and the EMERG group has met several times recently to plan the agenda

More details will be available on the Colloquium page, along with the agenda - click here.

As mentioned the pandemic has continued to disrupt plans for our annual international ME conference week and the other events that had been arranged, besides the Colloquium, have had to be rescheduled.
Due to absence of some of the researchers then the benefits of holding these physical meetings, with likely reduced audiences and speakers, would have have been comparatively few and the trustees felt it better to arrange a new date for these events in order to maximise the benefit.
IiMER will be arranging a webinar at a later date this summer but, for now, we will concentrate on the research Colloquium as that brings together researchers from around the world and provides great benefits for people with ME.
Already we have arranged meetings for 2023 and are looking at other options for this year.

NEWS

IiMER is a member of the European ME Alliance (EMEA).
EMEA has been working on a number of initiatives recently - a few are detailed below.

ME in the Nordic Countries

Recently the EMEA Nordic members EMEA produced a report on the status of ME in the Nordic countries.
The report was produced based on last year’s EMEA Nordic network’s mini-survey and online meeting, arranged by EMEA Finland, the Medical Association of ME/CFS in Finland.
The report maps health care and research in the Nordic region.

Read more

Roundtable Webinar

IiMER played a major part in working with our European ME Alliance colleagues in organising the recent and latest European roundtable webinar.
Working with the European Federation of Neurological Assoiations (EFNA) this latest multi-stakeholder, roundtable meeting on Myalgic Encephalomyelitis in Europe was held on 8 April and was opened with a keynote speech from the World Health Organisation.

The video from the roundtable will be available soon on the EMEA web site, at this link below -

More details here

ME in the Balkans

IiMER are also assisting in arranging the next EMEA webinar - ME and post covid in the Balkans.
Services across Europe for ME are not consistent.
This webinar is aimed to begin to change that by providing experiences from researchers and clinicians in Europe - with the aim being to change the perception of ME and improve the clinical and research environments in EMEA member countries in that area of Europe.

More details will soon be here

Charity Fundraising News

Walk for ME is an innovative and wonderful example of making a difference.
The original idea behind Walk for ME was that friends, family and loved ones of an ME sufferer do a sponsored walk on their behalf: hence the name Walk for ME or Walk for me.
To date Walk for ME has raised over £150,000 including gift aid - and a great deal has been generously donated to Invest in ME Research.
Our great thanks to all involved and for everyone supporting #InvestinMEresearch2022

More fundraising news here

Simon and Jane's Coast to Coast Trek

Quadram Institute scientist Professor Simon Carding is swapping a lab coat for walking boots to raise money for research into ME.
Simon Carding is Walking for IiMER this summer, together with his wife Jane.
He will be walking across England on a 190 mile walk from St Bees on the west coast to Robin Hoods Bay on the east coast. Hopefully some publicity can be raised before, and along the route.
Quadram have highlighted this - click here
Simon and Jane's JustGiving fundraising page is here.

Awareness Month

For awareness month we continue last year's theme - Research.
The more funding that can be applied to a strategy of biomedical research then the more rapid will be the resolution of many other issues related to this disease.

Read more

#InvestinMEresearch2022

Raising funds and awareness in order to support the theme of ME Awareness Month - Research into ME. Here is some of the support that the charity received, and is receiving, during April and May this year.

Read more

and lastly

Great advocate for ME, Anil van der Zee, recently received an IiMER t-shirt - and here he is testing it.
Anil raised funds and awareness for IiMER in 2020 with this campaign - click here.

Read more about Anil - click here

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