New Research Initiative in Memory of Anne Örtegren

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

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.

A big THANK YOU Team Walk for ME and supporters!

Our 40 x £1k Fundraisers Challenge

Susanna’s Christmas Garlands

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.

Team Catherine’s Christmas Cracker

These girls did!

Team members: FFion Hicks, Verity Ballard, Sophie Martin, Claire Bloomer, completed the Weston Athletic Club Christmas Cracker 10k run in aid of Invest in ME Research for their friend Catherine Halford.

Catherine’s Story

I was first diagnosed with ME at the age of 12 after having glandular fever,  I did not recover from this so many months of hospital visits led to my diagnosis. This had a big impact on my teenage years spending much of my time unable to join in with school activities and general growing up.  I was always very active and enjoyed many sports. I spent 5 years managing my health along with my education with lots of support from my family.  Much of my time was spent in bed unable to move and many nights of severe pain.  I was then very lucky and things started to get easier for me, my pain levels went down and I had more energy.  As the years went on I was able to lead a relatively ‘normal’ life with my ME in the background.  I was well enough and able to train for and run the London Marathon which is an achievement I am very proud of and can only dream about doing again.  In 2018 I caught the flu, this hit me hard and with my immune system hitting a low my ME was re-triggered.  This has been life changing for me, I have had to give up a job I love, my hobbies and can not always be there for my husband and children as much as I would like.  I spend my days trying to manage my illness once again while being there for my family.  I would love to be out running again but this is just not a possibility.  My lovely friends are running the 10k Christmas Cracker in order to raise money to support a fantastic charity.  I am so grateful to them and charities that support ME, one day treatment and a cure will be found to stop many others going through these life changes due to the illness.

Invest in ME Research is an independent UK charity finding, funding and facilitating a strategy of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS).The charity is run by volunteers – patients or parents of children with ME – with no paid staff.Overheads are kept to a minimum and all funds raised to go to promoting education of, and funding for biomedical research into, ME.Our efforts are focused on setting up a UK Centre of Excellence for ME which will provide proper examinations, diagnosis and in time treatment(s)/cure(s).

WAC Christmas Cracker 10k: justgiving.com/fundraising/crackerrun

Big thanks Team Catherine and all supporting Invest in ME Research!

✨Christmas Shopping and Fundraising for Invest in ME Research✨

Hay’s Book Giveaway for Donations over £10!

Author Hayley Green (Hay Baker) will send you any one of her paperback books of your choice as a thank you for any donations over £10 to her Facebook Fundraiser. You can see all of her books here on Amazon.

If you decide to buy any items on Amazon, please remember to use this referral link or sign up to Amazon Smile to generate an extra donation to Invest in ME Research at no extra cost to yourself.

Browse our bookshelf of other books kindly sold
with part or full royalties to Invest in ME Research.

Hayley is a long term ME sufferer, which is the topic of Day 4 of Invest in ME Research Advent Calendar and includes video of a presentation at the charity’s 6th conference by Dr. David Bell on his 25 year follow up of patients who initially fell ill during an outbreak in 1985.

It’s Day 4 of the free to enter easyfundraising contest to win prizes for you and donations for Invest in ME and still time to nominate the charity to a win £1,000 prize from Ecclesiastical specialist insurers.

✨Seasonal Shopping and Fundraising for Invest in ME Research✨

Thank you for supporting Invest in ME Research!