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Welcome to Invest in ME Research newsletter for March 2020

The original newsletter for March was being readied when the magnitude of the COVID-19 was becoming apparent to all.

Little other news seems relevant at this time as the situation in Europe and USA is about to become even worse.

So this newsletter is just to keep in touch with supporters.

We have made a page with some links to useful sites - and we can keep this updated with more links as they develop -

We hope everyone is able to get through this with as little effect as possible.

We hope all stay safe 

From all at IiMER


International ME Conference Week 2020

As already publicised the charity has had to cancel this year's International ME Conference Week in London due to the situation with the Covid-19 pandemic.
It is a great shame as much work had gone into the planning of the events but, of course, there was no alternative.
Our statement was here -

We would like to thank the Open Medicine Foundation for their generous donation to help with the conference. OMF have very kindly declined our plan to refund this and have instead donated this for IiMER's work.

..and What Next?

Cancelling the conference week at such a late stage presented the charity with a major problem.
The charity has committed to refunding all tickets and is in the process of issuing these refunds.

Our thanks go to those supporters who have waived a refund and instead donated the ticket price to the charity.

In order to minimise the financial loss due to the cancellation the charity has been working with the Colloquium and Conference venue owners and we have reached agreement on new dates - 2021.

The provisional schedule for 2021 will thus be -

Tuesday 25th May 2021   International ME Clinicians Workshop
Wednesday 26th May 2021 - Thursday 27th May 2021 
BRMEC11 11th Biomedical Research into ME Colloquium

Friday 28th May 2021 IIMEC15 15th International ME Conference
Saturday 29th May 2021 European ME Alliance AGM
In the current environment there is no certainty that everything will be back to normal by these dates but we have made a decision to aim for these dates where we hope to resume creating forums fro international collaboration in research and clinical practice for ME.

In the Meantime

We will continue to fund EMERG meetings to ensure that European collaboration can continue.

Working with our European ME Alliance (EMEA) colleagues we hope to build more research in Europe and deliver news soon of developments.

Norwegian Research Award

We were pleased to hear of new funding being given to the Tromsø/Harstad team for their Comeback study.
The funding is being provided by the EMEA Norway group Norges ME Forening
The Tromsø/Harstad team are working with the Norwich Centre and Quadram Institute has received samples already for analysis.
It was IiMER who introduced the Tromsø/Harstad team to Quadram and a good relationship exists - with Peter and Linn visiting Norwich last summer.

This project involving UK and Norwegian collaboration is another example of EMERG members working together.
The RESTORE-ME clinical trial to start this year in Norwich will also have EMERG links via the collaboration between Quadram and Uppsala University and the UK/Swedish link that has been provided by the IiMER funded PhD studentship that started this year.

We look forward to more UK/Norwegian collaboration and possibilities developing as part of EMERG.

Dutch Survey on Covid-19

Our Dutch colleagues in ME/CVS Stichting Nederland have been working on a questionnaire that they wish to send out to as many as possible ME patients.

They have asked the European ME Alliance to assist in distributing knowledge of this.

The purpose of the questionnaire is to conduct research as follows -
Purpose of research:  To determine:
  1. Do ME/CFS patients more often get infected with COVID-19 than other people?
  2. Do people with ME/CFS have other and/or more/ more severe symptoms than others?
More details are on the European ME Alliance web site at this page - click here

Fundraising Change

Support Welcome
With the news that fundraising platform WONDERFUL are closing then we are now only using Just Giving fundraising pages to support research and a Centre of Excellence for ME.
The Let's Do It For ME team has set up the following page for raising funds for the research
We would like  to thank all of our supporters who continue to make incredible efforts in fundraising over the past months.
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