HAPPY BIRTHDAY ROSALIND AMOR!

Happy 30th Birthday to our very own Rosalind Amor and thank you for all your support!

Rosalind’s 10th anniversary of Let’s do it for M.E/30th birthday fundraiser
is on Facebook and JustGiving

Rosalind wrote…

It is difficult to believe it’s now ten years since I private messaged ‘Ricardo’ on Foggy friends, the M.E chat room site, offering to support the newly established ‘Let’s do it for M.E’ campaign. The campaign was aimed at mobilising M.E patients to raise funds for biomedical research into M.E, with the long term objective of establishing a Centre of Excellence for ME in Norwich research park. This Centre of excellence, if it was created, would facilitate clinical examination of patients, translational biomedical research and education for medical professionals. The initial fundraising target was £100,000.

The exotic sounding ‘Ricardo’, who turned out to be our very english teddy Paul ‘bear’ Kayes, invited me to join the Let’s do it for M.E planning group on Facebook. It is extraordinary to reflect on how much I’ve done, experienced and gained since then. I’ve crocheted wristbands, set up a recycle for charity scheme, held a 21st birthday fundraiser, numerous competitions and sponsored events, done a stint as a Let’s do it for M.E blog author, been on television, even met my soul sister!

With the support of Let’s do it for M.E, Invest in M.E Research has gone from strength to strength. We succeeded in raising the initial £100,000. This was used to fund the first PHD student to kickstart the gut microbiota research project. Since then, Invest in M.E has continued to undertake research projects into the gut as well as into B-cells. IiMER now has five PHDs under its belt. The foundations needed for the Centre of Excellence have been laid. Hopefully this will soon become a full reality.

You may be wondering why so much research into the gut? The simple answer is that the gut is the gateway to the immune system. The gut plays a major role in the functioning of the immune system.  This is a fact that has only recently been discovered and even the basics are still yet to be fully understood. One of the reasons the gut plays such an important role in the immune system is because it contains a huge variety of different species of bacteria and viruses. Some of these bacteria are ‘friendly’ bacteria which helps you digest your food. Others are not so friendly. All influence your general health and ability to fight off disease. One of the seemingly common triggers of M.E is an initial infection or virus from which the patient doesn’t recover. It’s possible that changes in the gut microbiota could contribute towards patient’s inability to recover. Such changes to the gut microbiota could also cause local and systemic inflammation. This could explain the inflammation of the brain and spinal cord that has been found in the post-mortems of M.E patients.

Based on their ongoing research into the gut, IiMER are now proposing a clinical study of the effectiveness of feacal (poo) microbiota transplants as a potential treatment for M.E. Feacal microbiota transplants literally involve replacing the existing microbes in your gut with someone else’s friendly ones. This is of particular interest to me. A feacal microbiota transplant has been recommended to me as a therapy by both my specialist consultant and my best M.E friend. My M.E was initially triggered by a virus whose symptoms were very high temperature, nausea and vomiting (including on water). Although it’s never been discovered exactly what virus this was, the symptoms suggest it was a type of viral gastroenteritis (gut virus). Unfortunately I’m not able to take part in the clinical trial as you have to have been diagnosed for less than fifteen years in order to participate and I’ve been diagnosed for 21 years. However I’m hopeful about what the outcome could be. I appreciate that having someone else’s poo syringed down your nose isn’t the most appealing of treatments. However a recent study performed in a single centre in Australia has reported significant clinical improvement in over 70% of it’s M.E patients.

Recently IiMER pledged a further £650,000 towards M.E research which would include the cost to cover this major treatment trial. Some of the money for this pledge will almost certainly need to come from ordinary people crowdfunding. Since Let’s do it for M.E’s inception ten years ago, it’s become a movement with many schemes and people participating. We’re always keen to welcome new supporters however. From raising funds for free whilst shopping online to doing a sponsored marathon and everything in between, there’s something for everyone to get involved with. Check out https://ldifme.org/ for more information.

On a personal note, I’m fortunate to be able to say that my health has improved since my 21st birthday fundraiser. I’m now living in my own home with Madame Pickle (my cat) for company and can eat proper food, rather than being tube-fed. I am able to use a wheelchair, have completed a Open University access module and am just starting a level one module this autumn. Having said all this, my life is still far from being like that of a healthy twenty-nine year old. I hope I will continue to recover but, having already experienced severe relapses, it’s a fear that’s always there.

Because of this, once again I’m asking for donations for my 30th birthday, as I did my 21st. The greatest gift I could ever be given would be to live a healthy life again, unhampered by fear of relapse. IiMER is the best chance I’ve got of receiving such a gift. Plus, it’s also the 10th anniversary of the founding Let’s do it for M.E, which is something that definitely needs celebrating! So please join me in offering a toast, pulling party poppers and, if your finances allow you, giving a donation to continue supporting this vital work.

Let’s do it!

From Rosalind’s 10th anniversary of Let’s do it for M.E/30th birthday fundraiser
on Facebook and JustGiving

Thank you for your support!

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.

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

Your Input Needed for 2020 Public Engagement Event

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!

PRESS RELEASE: £500k Pledged by IiMER!

Invest in ME Research has announced a pledge by the charity of £500,000 to the biomedical ME research underway at Norwich Research Park.

As far as we know, this is the largest single pledge for biomedical research into Myalgic Encephalomyelitis ever made by a charity in UK!

IiMER Press Release
Quadram Institute News

The pledge covers joint funding of a PhD position in partnership with University of East Anglia and over 70% of the required funding for a clinical trial of Faecal Microbiota Transplantation being performed alongside other high-quality biomedical research at Quadram Institute.

Invest in ME Research pledged £435,000 towards the FMT trial earlier this year, so this new pledge represents an increase, thanks to the efforts of the charity and their supporters, including patients, carers, parents, friends and families affected by this disease. On their page describing the recent Centre of Excellence projects, IiMER write,

“The efforts of our supporters are exemplified in the Let’s Do It For ME campaign – started by three severely affected patients from their homes. They have enlisted friends and families to join with Invest in ME Research to create a grassroots movement to fund biomedical research into the disease, and thereby compensating for the meagre offical funding that has been given to research into ME over the years.

Invest in ME Research will now have funded or part funded five PhDs performing research into ME and working in partnership with researchers to initiate a foundation of high-quality research in one of the largest and most prestigious research parks in Europe.” Read more: investinme.org/pr01-Dec19.shtml

The press release is announced on Day 2 of the charity’s Advent Calendar.

Together we have helped raise and pledge over £900,000 for Invest in ME Research since the Let’s Do It for ME campaign launched in support of the charity’s plan to establish a UK/European Centre of Excellence for ME.

This includes a hugely generous pledge to the charity from The Hendrie Foundation towards a clinical treatment trial and their substantial donation to the B-cell ME research performed at UCL. We are enormously grateful to the foundation and to everyone supporting the development of the Centre of Excellence for ME and the ongoing research there.

Thank you all so much for supporting Invest in ME Research!

Let’s keep doing it for ME!

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Invest in ME Research

Donate/Share Let’s Do It for ME’s
fundraising for the FMT trial

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