Thumbs Down To M.E!

With everything that’s been going on in the world It seems M.E awareness month has not only arrived, but also overtaken us before we’ve had time to organise all the usual awareness, fundraising events and shenanigans that we love going on. However, thankfully there is still plenty of you out there waving the flag of awareness and doing some wonderful things that we mightily appreciate. As for doing my own bit? I have to admit that not knowing my Saturdays from my Tuesdays or my Mays from my Decembers or my breakfast from my Supper right now, the M.E awareness month hit me before i realized. I had been working on the “Thumbs Down To M.E” design and campaign at the beginning of the year but forgot to put it out, thats M.E Foggy head for ya? There are T-shirts and Hoodies & Totes that can be purchased from my Dizzyjam store and 100% profit from this design will be donated to Charity: Invest In ME Research

Also Jo Best has kindly updated my Mama Chill /Runnin On Empty awareness page so that, you can now download the M.E awareness tracks, & watch/share the Youtube videos all from that one page, and you can see them all here including the link to the Merchandise store Mama Chill

Stay Blessed X

Ecclesiastical’s 2020 Movement for Good £1,000 Awards

Please nominate Invest in ME Research (charity number 1153730) to help them win £1,000 in the 2020 #MovementForGood Awards: movementforgood.com/#nominateACharity

Charity Number: 1153730
Charity Name: Invest in ME Research
Charity Type: Health

Nominations are open from 6th May to 24th May.

Winners will be drawn at random. The more nominations for Invest in ME Research the greater the chance of them being selected. Entrants must be 18+ years. Only one nomination per Entrant is permitted so please share widely.

Hopefully, good timing to share as May is ME Awareness Month.

Following last year’s successful campaign, specialist insurer Ecclesiastical is giving a further £1million to charities, initially £1,000 to 500 charities.

Mark Hews, Group CEO of Ecclesiastical, says: “We’re delighted to announce the launch of Ecclesiastical’s Movement for Good awards for the second year running. The coronavirus is having a major impact on charities and many are facing financial difficulties. Our Movement for Good awards will continue to help charities at a time when they need it most and we know that for many charities, £1,000 can make a real difference.”

Let’s Do It for ME is run by patients supporting Invest in ME Research.

Invest in ME Research is an independent UK charity finding, facilitating, and funding a strategy of biomedical research into Myalgic Encephalomyelitis and promoting better education about ME.

Invest in ME Research is run by volunteers – patients or parents of children with ME – with no paid staff. Overheads are kept to a minimum to enable all funds raised to go to the charity’s work.

“We are a small charity but with supporters who have big hearts – and a determination to get the best possible research to be carried out to find the cause of myalgic encephalomyelitis and develop treatments.”

The charity was among the lucky winners last year thanks to your nominations and spreading the word. Let’s hope we can do it again.

Thanks to Ecclesiastical for this opportunity.

Nominate here: movementforgood.com/#nominateACharity

Thank you for supporting Invest in ME Research!

May 2020 Updates

Our 40 x £1k Fundraisers Challenge

40 x £1k Fundraisers Challenge for Invest in ME Research

Our 40 x £1k Fundraisers Challenge aims to raise £40,000 to reach the milestone of £1,000,000 raised and pledged for Invest in ME Research for the charity’s Centre of Excellence biomedical research programme and medical education projects for ME (Myalgic Encephalomyelitis).

Any individual, group, team, company, is welcome to join in.

There is no pressure at all to reach your fundraising target.

Simply contact us with the link to your fundraising page or event and we’ll add it to our 40 x £1k Fundraisers grid and share on social media.

Let’s Do It for ME is run by patients supporting Invest in ME Research and helping to crowdfund the charity’s Centre of Excellence for ME projects.

Invest in ME Research can provide fundraising aids such as their charity collection boxes, wristbands, T-shirts, posters, banners, as well as leaflets and other awareness or informational materials.

We’ve set up our own £1k target fundraising page on JustGiving and a team page which you’re welcome to join.

Wonderful.org closed end of March, so we’ve transferred our fundraising page Remembering Anne Örtegren to JustGiving.

Here are the details if you wish to send your donation to Invest in ME Research by cheque or bank transfer.

UK Bank Transfer
Bank: Lloyds TSB Heartsease
Sorting code: 77-66-53
Account number: 22439568

Bank Transfer from outside UK
IBAN: GB63 LOYD 77665322439568
BIC/SWIFT: LOYDGB21E05

Cheque
Send cheques payable to ‘Invest in ME Research’ to:
Invest in ME Research
PO Box 561,
Eastleigh,
Hampshire,
SO50 0GQ
(UK tax payers can add Gift Aid)

Let’s Do It for ME is run by patients supporting Invest in ME Research and fundraising for the charity’s Centre of Excellence for ME projects.

Our 40 x £1k Fundraisers Challenge

New Total £960,000

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