A Study Update by Katharine Seton

PhD student Katharine Seton has kindly provided an update via the Invest in ME Research Blog, on the study being undertaken at Quadram Institute, “Defining autoimmune aspects of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”. You can find it at this link where you are also welcome to comment or ask any questions: http://www.investinme.org/ce-blog-1802-01.shtml

Best wishes everyone and thank you for your support!

Welcome to IiMER Research Blog!

Invest in ME Research have created a page on their Centre of Excellence website for blogs by researchers funded by the charity to describe what they are doing, what experiences they have, what they think of research into ME, what they hope to achieve – and allow more communication with patients and the public.

IiMER hope this will help more people understand ME (Myalgic Encephalomyelitis) and the possibilities and opportunities which are available and being created by a strategy of biomedical research into the disease. You can comment on the individual blogs if logged in via Disqus, Facebook, Twitter or Google.

Kindly kicking off the new Research Blog is Katharine Seton, now in the second year of her PhD and based at Quadram Institute, the hub of the Invest in ME Research Centre of Excellence for ME.

Katharine describes her role in the research programme, the study she is currently focussing on, and explains why she has a personal investment and interest in ME research. Click here to read, comment, share: “Defining autoimmune aspects of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)”.

I aspire to help find a cure for ME … so watch this space!

Katharine Seton – Quadram Institute, Norwich

Katharine was among the PhD students speaking about their work at the charity’s 12th international biomedical research conference in London in June. Their presentations are on the IIMEC12 DVD available here.


(pictured above: Fiona Newberry, Shen-Yuan Hsieh (Ernie), Katharine Seton)

Fane Mensah, currently doing his PhD at UCL, also presented at IIMEC12.
The Research Blog includes articles by Fane that were previously published by IiMER as newsletters, so if you missed these, or would like to comment, they are ME/CFS – Through The Eyes of a Young Researcher (first posted January 2015) and Research News from Fane Mensah (first posted February 2017).

(pictured above: Fane Mensah, Christopher Armstrong and Isabelle de Rooij)

Thank you all involved for your support!

Please share widely: http://www.investinme.org/ce-research-blogs.shtml

£200k target hit for IiMER Gut Microbiota Fund!

You’ve done it again!

We are pleased to announce that another target for our crowdfunding campaign for a strategy of biomedical research into ME has been reached.

This update to our gut microbiota and related projects fund being performed at the UK Centre of Excellence for ME hub in Norwich Research Park brings the total raised so far for projects there to £200,000.

The research found, funded and facilitated by Invest in ME Research is the result of dedicated, generous and determined supporters who have not just given money but, also huge amounts of time and effort toward helping us change the direction of research into ME in UK and Europe.

The latest target has allowed us to fund two PhD studentships currently undertaking research at the Centre of Excellence hub in Norwich Research Park and allowed us to decide to commit to the future funding of another PhD at the Centre.

Please click here for the full update by Invest in ME Research giving details of the latest study in the biomedical research programme and other projects related to the UK Centre of Excellence for ME, and a message to you from the charity’s Chairman Kathleen McCall: http://www.investinme.org/ce-news-1709-04.shtml

We supporters at Let’s Do It for ME would like to thank the Trustees and Scientific Advisory Board of Invest in ME Research for their vision and dedication, and everyone working with them to establish diagnostic tests and medical treatment options for some 250,000 people with ME in UK and millions around the world.

Our thanks to each and every individual, family, group, team, organisation or company contributing to this vital research and supporting by whatever means.

Let’s keep doing it for ME!

We now have a fundraising page on BT MyDonate: https://mydonate.bt.com/fundraisers/fundraising4me1

£520k target hit for IiME Research Rituximab Fund!

You did it for ME! Let’s keep doing it! We supporters at Let’s Do It for ME would like to thank each and every individual, family, group, team, organisation or company contributing to this vital research and supporting by whatever means.

We would of course, also like to thank the forward-thinking and incredibly hard-working Trustees and Scientific Advisory Board of Invest in ME Research and all the other volunteers and researchers working with them to establish diagnostic tests and medical treatment options for some 250,000 people with ME in UK and millions around the world.

Please click here to read the full update by Invest in ME Research, where you will also find info and links to the charity’s various other projects related to developing a UK Centre of Excellence for ME needing further funding, such as the Gut Microbiota Research, education for medical students and the charity’s international biomedical research conference events: http://www.investinme.org/ce-news-1708-01.shtml

We have reposted an extract below.

Well done everybody and thank you for your support!

Invest in ME Research has now reached the target set for the B-cell/rituximab fund.

This is another major target reached and is a wonderful achievement by dedicated supporters and friends across the world. The total of funds raised or pledged for B-cell/rituximab projects is £520,000.

From this the charity has already funded research at UCL, including a PhD student, and allowed strong collaboration to be formed with the researchers at Haukeland University Hospital in Bergen, Norway.

The initial preliminary B-cell study at UCL looked for likely responders and also introduced the UCL team to research into ME [1], leading to a UK rituximab trial.

This early work also created the foundations of close collaboration between the UK team and the Norwegian researchers at Haukeland University Hospital in Bergen.

This working collaboration and the work performed at UCL was credited as enormously valuable to the Norwegian rituimab trial work by one of the specialists there.

Once it became clear that a reorganisation at UCL would mean the UK trial could not take place there, and once it was decided that the trial could proceed at Norwich Research Park, then further collaboration was made and the Norwegian team visited Norwich in force in January 2017 to discuss with the UK team – UEA, IFR (now Quadram Institute Biosciences) and UCL – at the Centre there – click here.

As we now make preparations for the next phase, a new visit to Norwich is planned for when the Norwegian team break the codes for their Phase III trial later in 2017.

From the £520,000 raised Fane Mensah was also funded with a PhD grant to continue the B-cell research which is so important. This work was described here (click here).

Recently this work has been expanded thanks to a grant from Solve ME/CFS in USA which allowed Fane and Chris Armstrong to collaborate (click here).

Chris and Fane met when both were invited by IiMER to the sixth Biomedical Research into ME Colloquium (BRMEC6) in London in 2016. Dr Zaher Nahle from Solve was there also, and so another collaboration ensued. The work funded by IiMER has produced this paper from Fane and collaborators – Chronic fatigue syndrome and the immune system: Where are we now? [2]

Our initial target of £350,000 which was set with our advisor some years ago was reached and allowed the additional B-cell research to take place.

A position for a Senior Research Assistant to help with the UK trial is being advertised.

Our plans are to continue to raise funds for the UK Centre of Excellence for ME where international collaboration is a key concept.

We are pleased that Professor Ian Charles of Quadram Institute discussed the possibilities with the Centre in his keynote speech at the recent IIMEC12 International ME Conference in London (DVD available here). Professor Charles stated that he hoped “…they were being ambitious enough” for the Centre.

Our thanks to the wonderful supporters who are making it possible to apply high-quality science to looking for the cause(s) of this disease.

Our dedicated microsite for the UK rituximab trial and B-cell research has more details.

We are working on updating that site shortly and will include it in the Centre of Excellence microsite.

We will also be introducing a blog section which will allow the IiMER-funded researcher to interact more.

We hope to begin that soon – more details here.

Our mascot, Professor Let’s Do It for ME, was created by our supporters and indicates the B-cell/rituximab total – posters by LDIFME’s Jan Laverick.

Please help us by supporting our campaign for the
UK Centre of Excellence for ME.

Ways to help us are shown in the column at the right of our page.

References

1.
http://onlinelibrary.wiley.com/doi/10.1111/cei.12749/pdf
2. https://www.researchgate.net/publication/316080804_Chronic_fatigue_syndrome_and_the_immune_system_Where_are_we_now
3.
http://investinme.org/ce-news-1702-01.shtml

Read more here: http://www.investinme.org/ce-news-1708-01.shtml

August Updates

august updates banner

Phew! Another sizzling summer month on the international scene for supporters and colleagues of Invest in ME Research. As the charity quoted for Stacy Hart’s 4th August blog at Runnin On Empty…

“It is summer and it means holidays for most – but not for Invest in ME volunteers. Fundraising for our strategy of biomedical research projects continues with numerous schemes being set up to raise awareness and funds by a great team of supporters.

Since the June conference in London the charity has been busy getting the DVD of the event ready for delivery. The many hours of film footage need to be edited to a format that contains information in an accessible form, avoids unnecessary gaps, unplanned noises, comments or delays.

As ME is such an underfunded and under researched condition it is supporters of our charity that enable us to provide the latest education on research into ME – and build a strategy based on international collaboration in translational biomedical research – which looks for causes rather than simplistic psychological remedies that waste time and money – and lives.

Unfortunately, the NHS provides very little for ME patients and the services do not match the demand. Patients and carers rely on the internet and charities like ours to provide the information. Kjersti Krisner from Norway spoke at the pre- conference dinner about very severely ill ME patients and she said they are so grateful when someone cares about them. They live in hope and are so happy if they improve a little. Kjersti’s wonderful, positive pre-conference presentation is a must-see – and will open our IIMEC11 conference DVD.”

The IIMEC11 DVD containing the full presentations by leading biomedical researchers into this disease from around the world at the CPD-accredited 11th Invest in ME Conference held in London in June is available now and has already been distributed to 15 countries.

The conference followed the 2-day Invest in ME Biomedical Research Colloquium which brought researchers together from 13 countries to foster international collaboration in biomedical research into this disease. The conference report is available here. The keynote speech was given by Dr Vicky Whittemore of the NIH. The last research presentation of the day was given by Director of the Stanford Genome Technology Center at Stanford University, Ron Davis, whose son Whitney Dafoe has very severe ME/CFS. As promised, the IIMEC11 DVD also includes the very moving and thought-provoking presentation ‘Voice for the Voiceless’ by Kjersti Krisner, Norwegian advocate and mother of three children with severe ME. Order it here http://www.investinme.eu/IIMEC11.shtml#dvd

Severe ME Day
Severe ME Day is held on 8th August in honour of the birthday of the late Sophie Mirza, launched by The 25% M.E. Group in 2013 as a day to bring public awareness to those suffering from Severe and Very Severe Myalgic Encephalomyelitis and to remember all those no longer with us. The idea for this special day of understanding and remembrance was conceived by Diane, whose daughter Lili sadly died last year. Diane’s Story – Lili was published by Invest in ME in February 2013.

The Let’s Do It for ME campaign was launched by people with severe ME, inspired by an article in the Eastern Daily Press in April 2011 on the progress of the proposal by Invest in ME to establish a Centre of Excellence for ME, featuring Kerry Newnham. Kerry has severe ME and was a text pal of Lynn Gilderdale, pictured at the top of our memorial poster created by Caged Bird with kind permission of Lynn’s mother, Kay Gilderdale. The names in the background of the poster are from the National CFIDS Foundation Memorial List.

Fundraising Updates
Jane Hurst raises funds for The 25% M.E. Group and Invest in ME Research through sales of the greetings cards she creates at home as a long term sufferer of severe ME. Jane’s Nature Photocards are available to buy online and her family also hold sales at local venues throughout the year. After a sale at O’Flynn’s Budgen’s Poringland store on 13th August, Christine Hurst (Jane’s mum) wrote, “We did really well and just about sold out. Everyone was full of praise for Jane’s lovely cards and we raised £186.20. Thank you O’Flynns Budgens for letting us sell the cards and their very generous customers.” O’Flynn’s Budgens tweeted, “Well done and thank you to all. We hope Christine will be in store again soon”. Our thanks and congratulations to the store on their 10th Anniversary this year!
Bill Clayton of The York ME Community set up a JustGiving page for Invest in ME in August. “Although I’m no longer able to work, I have short periods where I can concentrate on projects such as fund raising for Invest in ME who are doing such great work. The current project is with the aim of gaining more foot soldiers in the York area by bringing businesses on board by offering to advise their HR Teams about ME and through our inaugural Inter Company Fantasy Football League. Every penny of the funds raised from their registration fees will go to Invest in ME, and the hope is to to continue to raise funds in other ways too. Thanks to the York businesses who have supported us in supporting Invest in ME Research.”
Congratulations to Maria Houlihan on winning Lucy Macdonald’s Forgetmenot Quilt raffle drawn on 11th August. Lucy added, “Commiserations to those of you who didn’t win but may you have peace in the knowledge that the funds raised will be for the winning of a cure of this chronic dis-ease. Thanks again to all of you who took part.”
High five to Chris Turner for doing a skydive on 14th August, and thanks to his supporters raising £405 + £92.50 for Invest in ME!
On 15th August, Mike Harley was in Poland to run the 7th of his 28 EU Marathons. He wrote, “The finish was superb, amongst the best I’ve experienced, I ran over the line with my Invest In ME flag and got snapped a lot”.
Winner and runner up of Paul Kayes’ Rio Sweepstake generously donated their prize money to Mike’s JustGiving page. Thanks eveyone supporting Mike’s mega marathon challenge for Invest in ME.
Emily Norton correctly guessed the exact number of medals in Sophie Tennent’s Rio 16 Charity Sweepstake, which added at least an extra £50+ into Sophie’s JustGiving page in memory of those who have passed away from ME. She wrote, “It all adds up and I am entirely grateful for your support”.
Thanks everyone who organised and took part in the Charity Sweepstakes.
Big thanks to tenacious Team Rainbow Rabbits for doing The Colour Run Birmingham on 20th August for Invest in ME! Becky Hithersay wrote, “We did it!  Big huge thank you to all who sponsored us, you raised £257 (plus an extra £46.75 Gift Aid) for IiME (Invest in M.E). This is a fantastic amount and we’re really grateful to every one of you. Hopefully this also will reach those who didn’t leave names. Goodness me, I’m overwhelmed! Here’s a few pics, what a great day we all had, and the kids did a fantastic job”.
Inspired by a friend with ME “opening her eyes to this illness”, Penny Hooper announced her plans to raise awareness and funds for Invest in ME while going Round the World for ME and also nominating friends for a colourful challenge! You can find Penny’s page on Facebook, follow her on Twitter and read her story on JustGiving. Big thanks to Penny and everyone supporting her.
Stu Nimmo geared up for his runs for Invest in ME Research with specially designed T-shirts. He is doing this to support Karen Morris and donations go to her page on JustGiving. You can find Stu Nimmo runs for Invest in ME Research on Facebook, follow Karen Morris on Twitter, and support their fundraising efforts at Karen’s page on JustGiving.
Chloe Riches posted on 16th August, “I’ve gone blue! Now just waiting for 6th September before it all comes off 🙂 please share/donate to help this great cause 🙂 thankyou xxx”
Paul Kayes wrote that, so far he has earned £361.52 using TopCashBack all of which has been donated to Invest in ME Research and gift aid added so £450 in total. Would you be willing to sign up using our referral link? http://www.topcashback.co.uk/ref/paulk22
Lynne Allan continued to sell her delightful hand-crafted jewellery available on Etsy at ME2UDezignz with proceeds kindly donated to Invest in ME Research. You can find ME2UDezignz on Facebook, follow on Twitter, and keep an eye out for her Fiver Friday offers.
Thanks to Alison Orr, Invest in ME is one of 204 charities nominated by Phoenix traders which will receive a donation from The Phoenix International Charity ranging from £50 to £1,000, based on 70% of the funds raised through Christmas card sales in 2016. Alison added, “At least 20% of all sales through www.cards4investinme.co.uk goes to Invest in ME, so buy your Christmas cards from me and even more will be donated to Invest in ME! The Christmas brochure is online now. Have a look at the online flipbook version at the link. Delivery only £4. All profit to Invest in ME.” You can find Cards 4 Invest in ME on Facebook and follow on Twitter.
Research Updates
August Update on Invest in ME B-cell/Rituximab Research

Invest in ME announced that they have agreed to fund an additional student at UCL to assist with the project “B cell function in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Investigations of metabolic function during B cell maturation and differentiation”. The aim is to investigate potential differences in B cell maturation, differentiation and metabolism between patients with ME/CFS and healthy controls.  The charity will underpin the extra work with a grant of £9000 to cover the student who will work until early 2017 assisting existing PhD student Fane Mensah and Dr Jo Cambridge. The team hope to identify whether potential differences are due to alterations in signalling or metabolism in B cells from ME/CFS patients and the additional student resource will hopefully accelerate Fane’s project.

Thanks to mulitiple generous acts from individuals and organisations (click here) and the amazing generosity from the Hendrie Foundation who have pledged a huge sum toward the rituximab trial and B-cell research, Invest in ME has managed at the time of this article, to raise £495,000 for the total research either performed, underway or coming to be performed. (click here to donate).

August Update on Invest in ME Gut Microbiome Research

The total raised reached £175k of the £200k target and the charity posted –

Invest in ME continue to build their foundation of biomedical research at Norwich Research Park by maintaining their medical student sponsorship grant strategy for the third year running. The medical students they sponsor take part in the biomedical research projects the charity is funding which gives experience but also raises awareness amongst other medical students about myalgic encephalomyelitis. Their grants are for £5000 minimum.
They plan on continuing to maintain this key part of their research strategy. (click here to donate).

Upcoming in September

1st September: 1st of the month – the day to donate £1 to Invest in ME Research

4th September: Stu Nimmo runs Salford Quays 10k – www.justgiving.com/fundraising/isupportmeresearch

6th September: Chloe’s Head Shave for Invest in ME – www.justgiving.com/fundraising/Chloe-Riches1

12th September: Makayla Nunn will be 13 years old. She wrote,
“it will be 5 yrs in October that I have been ill, but this summer the hospital have said if I can manage and pace myself I can spend extra time with my horse Tommy. So because of this I want to challenge myself and Tommy to jump a 4ft jump… this will be a challenge as I’ve not been jumping for that long and Tommy has had a bit of a rest from jumping but I know we can do it and no better way to challenge myself than raise money for Invest in M.E at the same time. Please help me to help Invest in M.E because this illness can affect anyone at anytime and at any age no matter how fit or active they are M.E doesn’t care but I do I want answers. Thanks for taking the time to visit my JustGiving page.” www.justgiving.com/fundraising/Makayla-Nunn2

28th September: Deadline for voting for the JustGiving Charity of the Year award. You can vote once for any JustGiving charity, up until Wednesday 28th September 2016. Click here and type in IiME then click on their logo to complete the online voting form.

Wishing you all a super September – thanks so much for your support!