Welcome to Invest in ME Research newsletter for June 2020


In these times it is difficult to concentrate on much else than the Covid-19 pandemic and all of the different consequences it has posed for society. We commented on this in March.
The situation has presented new challenges for ME research - as well as opportunities.
Many researchers have been pulled into covid-19 related research.
In Norwich Research Park there have been many initiatives and several teams involved in the planned IiMER-funded clinical trial have been working in these areas

The labs in Quadram Institute have joined others in the research park in performing research into ME - click here.

Also a new study into COVID-19 persistence in the gut is recruiting participants in Norwich - click here for more information.

In the European ME Research Group (EMERG) most of the researchers have been involved in some aspect of Covid-19 related activity.
For example, EMERG member Professor Jonas Bergquist from Uppsala University in Sweden descibed his work on Covid-19 and how it may help research into ME - see this article in Swedish but can be translated via Google Translate.
So the pandemic creates many issues for science and ME research is affected. Yet we hope to benefit in some way - even if we have to do most of the pushing ourselves.
"Sparse resources exist for ME...Europe has the expertise...evident for some while we must create foundation for sustainable research...and we are forced to start this ourselves in the absence of official support"


Despite the Covid-19 disruptions then we are still hoping that the planned clinical trial at Quadram Institute can begin this summer.
Currently we are looking at August as the planned project start date.

A reminder of the information from the public event is here

No 2020 Conference - But Relive the Past

Invest in ME Research has rescheduled the 2020 International ME Conference Week to the last week in May 2021 - in the hope that some normality has returned by then and the possibility to hold events exists.

In the meantime the charity has released all of the videos from every one of the international ME conferences since we started hosting them in 2006.

Reports and the full conference videos are available here - click here

Movement for Good Award

Invest in ME Research has won a £1,000 Movement for Good award thanks to nominations from the public.

Invest in ME Research was nominated to win a £1,000 boost as part of specialist insurer Ecclesiastical's Movement for Good awards, which is giving £1million to charities this summer.
Our grateful thanks to all of our supporters.

EMEA Funds EMERG Research

European ME Alliance members IMET (Irish ME Trust) and Invest in ME Research have agreed to supply some funding to EMERG researcher Associate Professor Rikke Olsen's team in Aarhus, in order for the current project to finish and be able to publish their research.
IMET has previously helped IiMER with funding and has contributed to the research for the upcoming RESTORE-ME clinical trial at the Centre in Norwich.
This is the first time EMEA has come together specifically to fund research being performed in the EMERG group of researcheres and we hope to increase this over the next years.
Rikke's team is publishing research on mitochondrial dysfunction in ME, immuno-cellular aging in females reporting development of ME-like symptoms after exposure to HPV vaccination,.and Bioenergetic and proteomic profiling of immune cells in ME patients.

Meanwhile EMERG researchers are working together on a collaborative project relating to ME and we hope of good news to come.

A Student Life Podcast - Secret Life of a Graduate Student

One of the IiMER-funded PhD studentships recently completed a podcast - Secret Life of a Graduate Student.

Katharine Seton is working at the Centre in Norwich Research Park and recently was interviewed by the Student Life podcast to discuss what it is like doing a PhD with a chronic illness - ME.

Listen via this link https://secretlifeofagradu.wixsite.com/home/podcast/episode/1f12f0cb/overcoming-obstacles-i-know-i-have-my-limits-and-they-dont-limit-me-with-current-grad-student-katherine-seton

Masks for ME

Supporters of the charity dream up imaginative ways to support us. Wendy Slater began producing washable, double and triple layer washable cotton face masks to help anyone needing to use them - and with more and more instructions requiring this then it would seem to be everyone.
Wendy is kindly donating profits to Invest in ME Research.

Read more

EFNA Open Letter to European Commissioner for Health and Food Safety

The charity is part of the European ME Alliance (EMEA), which in turn is a member of the European Federation of Neurological Alliances (EFNA).

EFNA recently joined with the European Academy of Neurology to write an open letter to the EU Commissioner for Health and Food safety 
The letter called for an increased prioritisation of neurological health in the revised EU health budget.

Read more

NRP Biorepository goes live with new laboratory management system

A biobank for health research based on the Norwich Research Park has successfully gone live with a new laboratory management system and is now supporting Norfolk’s COVID-19 research efforts.
The Norwich Research Park Biorepository is a partnership between Norfolk and Norwich University Hospital (NNUH), Quadram Institute Bioscience (QIB) and the University of East Anglia and provides samples of human tissue to health researchers.
This adds to the great resources available in Norwich Research Park to support research into diseases, such as ME.

Read more

WE ME booklet  

Much is spoken nowadays about community behaviour in the wake of the Covd-19 fallout.
It is interesting to note the attitudes to Covid-19 - and to those infected by the virus, and those recovering from Covid-19.
The charity's booklet WE - A Community and ME - viewed ME as seen from different viewpoints in the community and as an aid to understanding the issues that people with ME and their families face.
The booklet is available for free from the charity and can be a useful aid when attempting to inform others about ME.
We would like  to thank all of our supporters who continue to make incredible efforts in fundraising over the past months.

Especially thanks to all that set up birthday fundraisers on Facebook, or who make crafts to sell and have those who have set up various challenges. We appreciate your kind support.
Also thank you to those who have made specific donations to the charity.
All of these acts are greatly appreciated.
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