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New Research Initiative in Memory of Anne Örtegren

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The PhD studentship established in memory of Anne Örtegren has started two years to the day since her passing. This joint UK-Swedish studentship is funded by Invest in ME Research and University of East Anglia.

Anne Örtegren was an outstanding advocate for Myalgic Encephalomyelitis, a great friend to Invest in ME Research, and a generous supporter of the Let’s Do It for ME fundraising for the charity’s UK/European Centre of Excellence programme of biomedical research and medical education.

Anne’s suffering from this dreadful disease became unbearable, and she had arranged to end her life in January 2018.

They had never met in person, but Anne had corresponded with Invest in ME since 2007, the year after they had formed as a charity.

Anne was not just a good friend of the charity, she was an inspiration and a reason to continue to work hard to get high-quality biomedical research into ME and up-to-date education in healthcare and the disease. Anne was also a vital link in helping Invest in ME Research continue working to build international collaboration, especially in her native Sweden.

The new PhD project links with the research of Professor Jonas Bergquist, continuing long-standing collaboration between Norwich and Uppsala University, and would have also involved the late Professor Jonas Blomberg, who sadly passed away in 2019.

The Principal Investigators for this PhD project are Professor Simon Carding, Group Leader, Quadram Institute Bioscience, and Dr. Penny Powell, Senior Lecturer in Cell and Molecular Virology and FMH Associate Dean PGR, Norwich Medical School, UEA.

This PhD project will augment the forthcoming UK FMT clinical trial. The aim of the project is to determine the impact faecal microbiota transplanation has on the intestinal virome and on host viral immune responses in parallel with clinical outcomes in ME patients. Treatment outcomes will be assessed clinically through cognitive function and activity monitoring tests.

The project will involve microbiome and virome profiling and functionality, and pathogen discovery through bioinformatics analysis. In addition, in Uppsala, patient samples will be used for metabolomic analysis and assessing the function of the transplanted microbiota.

This joint project is another way for Invest in ME Research to honour Anne’s memory and her work. The inaugural Anne Örtegren Memorial Lecture at the charity’s international biomedical research conference in 2018 was given by Professor Theoharis C. Theoharides on the topic of Mast Cells and Professor Jonas Blomberg gave a tribute to Anne. In 2019, the subject of the Anne Örtegren Memorial Lecture was Pain and was presented by Professor Stuart Bevan.

The results of Anne’s tireless efforts are also reflected in the work of Invest in ME Research as they continue to facilitate collaborations between researchers in different countries and also clinicians by initiating the European ME Clinicians Council (EMECC).

To mark the start of the new PhD project, Team Let’s Do It for ME has created a fundraising page Remembering Anne Örtegren for donations to the next phase of the UK/European Centre of Excellence projects.

This is the last week for you to provide online input about the research for the upcoming Public Engagement Meeting next month.

Thank you everyone for remembering Anne Örtegren.

Thank you for supporting Invest in ME Research.

LINKS

Joint UK-Sweden PhD Project
UK FMT Trial for ME
2019 Conference Report
Anne Örtegren Memorial Lecture May 2019
Professor Jonas Blomberg February 2019
Anne Örtegren – A Year On January 2019
2018 Conference Report
Anne Örtegren Memorial Lecture May 2018
Farewell to a Friend January 2018
Farewell – A Last Post from Anne Örtegren

Walk for ME 2020

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Do you know anyone who might like to do a sponsored walk or other activity in 2020 to help raise awareness of Myalgic Encephalomyelitis and biomedical research funds for Invest in ME Research?

Sarah-Louise Fittall Jordan, Luke Remnant, Ian McPhee and Geoff Allen, have launched Walk for ME 2020, their 8th consecutive year of fundraising in which they have raised over £150,000 for ME research thanks to walkers, runners and swimmers across England, Scotland, Wales, Ireland and the Isle of Man as well as in France, Germany, Spain, Malaysia, Australia, New Zealand and on both coasts of America!

The original idea behind Walk for ME was that friends and family of an ME sufferer did a sponsored walk on their behalf, hence the name. Since then, supporters have chosen several other activities too, in their quest to help the team raise money for biomedical research into ME.

The hope is that this will be a fun event even though it is poignant. The whole idea is that a friend or family member is doing something that their loved one would love to be able to do but can’t because of their illness.

Walk for ME has its own fundraising page for Invest in ME Research on JustGiving and a team page for fundraisers to join. This makes it easier for them to keep tabs on totals raised but if you prefer to use another fundraising platform just let them know the link.

To create your own page and join the Walk for ME fundraising team on JustGiving in suppport of Invest in ME Research:

1. Go to justgiving.com/investinm-e
2. Click the box ‘fundraise for us’
3. Either log in to your account or sign up if you’re new to JustGiving
4. Click on ‘personal challenge’ under ‘What are you doing?’
5. Follow the steps and choose your JustGiving web address
6. Click on ‘create your page’
7. Personalise your page. You can say who you are walking for and why
8. Then go to justgiving.com/teams/walkforme2020 and scroll down and click on ‘Join the team’
9. Select your fundraising page to add it to the team
10. You can then send your own JustGiving address to friends to raise sponsorship. Any target you set on your own page will automatically add to the team target.

You can find Walk for ME on Facebook and Twitter.

https://twitter.com/Walk_4_ME/status/1212000928322248705?s=20

A big THANK YOU Team Walk for ME and supporters!

Our 40 x £1k Fundraisers Challenge

New Total £960,000!

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Invest in ME Research announced in their Christmas and New Year Funding Appeal that £960,000 has been raised and pledged to support the charity’s Centre of Excellence for Myalgic Encephalomyelitis projects.

The Let’s Do It for ME campaign is run by severely ill patients supporting the charity’s Centre of Excellence programme of biomedical research and medical education projects. Our original crowdfunding goal of £100,000 enabled this work to get underway in 2013 (patient samples for the lab work obtained since 2014) and we would love to reach £1,000,000!

So to start off the new year, we have created a grid with 40 vacant slots with a funding target of £1,000 each and invite you to contact us if you’d like to aim to raise £1,000 whether as an individual or group, private or business. Read more on the page for Our 40 x £1k Fundraisers Challenge.

Many thanks to everyone helping Invest in ME Research to achieve their goals relating to maintaining a programme of high quality biomedical reseach with international collaboration focused on establishing diagnostic tests and medical treatments for this disease.

The charity wrote in December,

“To our supporters we owe great thanks – you helped create something that was thought unachievable. A sustainable Centre of Excellence for ME is now harnessing the benefits of a strategy of collaborative international biomedical research in modern facilities with world-class researchers.”

With very best wishes to you for 2020 and the new decade ahead and grateful thanks for supporting Invest in ME Research.

In case you missed it, your input is needed to inform the agenda for an upcoming public engagement meeting at Quadram Institute.

Our 40 x £1k Fundraisers Challenge

Susanna’s Christmas Garlands

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Susanna has been selling Christmas garlands over the year of 2019 to fill people’s homes with festive joy and also raise precious funds for Invest in ME Research for biomedical research into Myalgic Encephalomyelitis.

Susanna’s efforts have raised over £600 including Gift Aid.

“Thank you so much for your support. Your donation may just be the £1 that gives some concrete answers and makes all the difference to me and people like me.” Read Susanna’s story on Wonderful here.

Susanna’s story is featured in the new Invest in ME Research booklet WE – a Community and ME – the topic of Day 13 of their Advent Calendar.

Thank you all for supporting Invest in ME Research!

🎅Merry Christmas Everyone🤶

If you want to send any last minute Christmas cards and support Invest in ME Research at the same time, click here for ecards.

Your Input Needed for 2020 Public Engagement Event

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Invest in ME Research and Quadram Institute are arranging a Public Engagement Event in Norwich on 7th February 2020 and are inviting patients, carers and supporters to send them any input to the meeting.

They are collecting information now in order to plan the agenda. If you have specific issues or questions that you feel should be addressed at the public meeting then please use the contact form on this page.

Supporters will know that work has been ongoing to establish a Centre of Excellence for ME (Myalgic Encephalomyelitis) based at Norwich Research Park, which houses Norfolk and Norwich University Hospital, University of East Anglia, Norwich Medical School, Earlham Institute (formerly The Genome Analysis Centre) and the new Quadram Institute.

Invest in ME Research is run by volunteer parents and patients. The charity published a detailed proposal for a centre in 2010 and began crowdfunding in 2011 to enable the biomedical research programme to get underway in 2013. The next phase is a clinical treatment trial of faecal microbiota transplantation for ME planned to start in 2020.

IiMER and QI are keen to discuss the planned research with patients and carers, and wish to get views and additional insights to help them shape their future research. They will be discussing logistics for this meeting and will be meeting in the New Year to plan the event.

Please contact them through the contact form on this page.

The meeting itself will be on the morning of 7th February 2020 (the likely time being 10:30 – 12:00) in the new Quadram Institute building near the Norfolk and Norwich University Hospital; postcode NR4 7UQ.

More details will be provided nearer the time.

Many of us are too ill to leave our homes or are unable to attend meetings in person for other reasons, but please do take this opportunity to share your thoughts and ask any questions to help shape the agenda.

Let’s Do It for ME is run by severely ill patients supporting Invest in ME Research and their Centre of Excellence for ME projects.

Day 23 of the Invest in ME Research Advent Calendar is about the Centre of Excellence for ME so you can read more about it here.

Link to the meeting info and contact form here.

Thank you for supporting Invest in ME Research!