Special Issue Newsletter from Invest in ME Research

Thanking You on 8 Years of the Let’s Do It for ME Campaign

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Invest in ME Research has been highlighting the development of a Centre of Excellence for ME and its opportunities for some years. We are pleased that the work the charity has put in to form the foundations of research has progressed slowly but surely thanks to our supporters who believed in our strategy and supported our plans. More and more are gradually becoming aware of the foundations that have been laid to make sustainable progress in research and treatment of ME.

Quote by Thomas Carlyle

There are many areas of life where unsung heroes make sacrifices in order to make progress – never desiring recognition or fame or glory for themselves – but just trying to make a difference.

Let’s Do It for ME (LDIFME) is an awareness and fundraising campaign launched in July 2011 by severely ill housebound or bedbound patients. The team met on Facebook and wanted to do something positive and practical to support the proposal by Invest in ME Research to establish a Centre of Excellence for ME based at Norwich Research Park and working in collaboration with other researchers in UK and internationally.

LDIFME have recently celebrated their eighth year and we wished to acknowledge their efforts and achievements – these selfless, unsung heroes who are and have been a credit to people with ME and their families and carers.

The LDIFME team has composed a summary of some of the work performed and the achievements realised over the last eight years.

We wish to thank the LDIFME team and all the supporters of every campaign, every fundraiser, every letter of support, every contribution made to this great grassroots movement- which has made so many innovations over the years to make progress in research, treatment and perception of ME.

Because of their efforts we now have a real possibility to make progress and it is right before us, having already established the following -.

Thank you LDIFME and our supporters for your wonderful efforts.

  • A UK/European hub for biomedical research into ME
  • A clinical trial which will raise the profile of ME and achieve scientific objectives
  • A GP fellowship to educate GPs and create champions in clinical care for people with ME,
  • PhD students introduced to research 
  • Medical students involved in research
  • High-quality biomedical research from top researchers in the leading European research park, complete with university and university hospital,
  • European collaboration
  • A European ME Clinicians group established and working
  • A European ME Researchers group forming
  • International research Colloquiums bringing researchers together.
  • International ME Conferences that allow researchers, clinicians, patient groups and carers to interact and network.

All this achieved by IiMER, LDIFME and our supporters ……. it is already there, just needing funding to maintain.

Read more on the LDIFME site at this link-
http://ldifme.org/2019/07/31/8-years-doing-it-for-me/

We welcome support to continue our work to develop further the hub for biomedical research into ME-

https://www.wonderful.org/charity/investinmeresearch

#CofEforME #LetsCresearch

Thank you all at IiMER from Team LDIFME!

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Invest in ME Research – Let’s Do It!

8 Years Doing It for ME!

£900k Crowdfunded for Biomedical ME Research

If you have been with us from the start then please congratulate yourself on your part in changing the landscape of research and future treatment of ME in UK and beyond! Also please accept our massive thanks for your ongoing support to help the charity Invest in ME Research achieve so much.

If you are new to our site, we extend a warm welcome and an invitation to join our efforts to support Invest in ME Research through the next phases of their vitally important work on developing a UK Centre of Excellence for ME for biomedical research and treatment of Myalgic Encephalomyelitis.

What’s been achieved over eight years?

ME set as a disease target on world-class Norwich Research Park

4 PhDs funded by Invest in ME Research

Science papers published

First two crowdfunded PhDs graduate 2019
(Dr. Daniel Vipond, QI and Dr. Fane Mensah, UCL)

Medical students intercalate in research funded by the charity

International research and medical education collaborations

The above mentioned in two Parliamentary debates on ME

GP Fellowship Scheme

Work underway for 2020 trial of FMT as a treatment for ME

A recap of the story so far, updates, and what’s next…

Let’s Do It for ME is an awareness and fundraising campaign launched July 2011 by severely ill patients, house/bedbound. We met on Facebook and wanted to do something positive and practical to support the proposal by Invest in ME Research to establish a Centre of Excellence for ME based at Norwich Research Park and working in collaboration with other researchers in UK and internationally. NRP has all the facilities needed for such a centre; a university, medical school, university hospital, as well as the relevant scientific institutes and genome analysis centre.

Invest in ME (the charity transitioned to the name Invest in ME Research over the next few years) published their proposal for a UK Centre in May 2010. Less than a year later everything was in place for plans to begin at Norwich Research Park except for a local specialist doctor qualified to examine and diagnose patients with ME.

We decided to crowdfund £100k to enable the programme of biomedical research to get underway. We succeeded thanks to brilliant support from fellow patients around the world and many of their friends and families! Some of those early supporters are pictured in the mosaic image above. We enlisted Professor Let’s Do It for ME Bear to help us keep count. The University of East Anglia issued a press release in 2014.

Professor Simon Carding IIMEC14 2019

The focus of the research is the role of infection and the immune system in ME, including whether autoimmunity plays a role.

The starting point is the gut as the site of most of the immune system, specifically microbes residing in the gut, and whether microbes cross the gut wall into the bloodstream triggering an autoimmune response.

ME is classified as an organic neurological disorder (WHO ICD-10 G93.3). Alterations in the gut microbiome and dysregulation of the gut-brain axis have been found in several diseases such as Parkinson’s and Alzheimer’s.


Professor Simon Carding IIMEC14 2019

Leading the work on ME at Norwich Research Park are Professors Tom Wileman and Simon Carding, joined by 4 PhD students to date.

The researchers decided to target severely ill patients and have worked extremely hard through the whole process of initiating ME research at Norwich Research Park, a great deal of planning, extensive literature review, administrative procedures, a lengthy process in itself, before taking the first samples from patients in 2014 to study in the lab.

The team engage in lengthy round trips to London and Surrey to obtain samples at home visits to patients under the care of specialist Dr. Amolak Bansal. To meet ethics requirements and also to ensure patients meet the selection criteria, a clinical specialist is required. As there were none in Norwich, Dr. Amolak Bansal kindly stepped in as the clinical consultant.

The team also face extreme temperatures for ME science!

The pioneering Phd student engaged to work on the foundation study investigating a role of leaky gut and the intestinal microbiota in the pathophysiology of ME formally graduated July 2011 and his metabolomics paper based on his PhD work has been submitted for publication. Congratulations Dr. Daniel Vipond!

Medical education is another important element in the Invest in ME Research Centre of Excellence model.

ME either doesn’t feature on medical school curricula or is mistakenly taught as a common psychosomatic condition. This leaves newly qualified doctors at a loss when faced with ME patients in the real world.

Working with Norwich Medical School, the charity introduced a scheme for medical students to spend an intercalated year working
on the research funded by the charity.

Dr. Anthony Komaroff cited a paper by medical students (now qualified doctors) Naveena Navaneetharaja and Verity Griffiths at the NIH research conference in Washington April 2019.

Dr. Ian Gibson was instrumental in supporting Invest in ME Research in their plans to establish a Centre of Excellence. Professor Ian Charles, Director of the Quadram Institute, a brand new building on Norwich Research Park where the ME research is now located, is also enthusiastic about the prospects and has presented at the charity’s conferences.

“The development of this new centre, together with the other expertise and facilities located at the Norwich Research Park, puts it in a very good position to lead a UK and European Centre of Excellence for biomedical research for M.E. to provide possible prevention and solutions.”
Professor Ian Charles, Journal of IiME Abstract 2015

Let’s Do It for ME’s Rosalind Amor
The Link Spring 2019

BBC Look East has so far screened two excellent reports on the Norwich ME research, and the latest update in The Link, Norwich Research Park’s magazine, is in the Spring 2019 issue.

Carding Lab and QI colleagues are proactive in raising awareness and funds for Invest in ME Research. They braved the Chilli M.E. Challenge in 2015. Watch out for their second World Shirt Day next year!

By July 2019 the total raised for Invest in ME Research for the biomedical studies designed to find cause/s and treatment/s for ME is £900k!

This amount includes a generous pledge by the Hendrie Foundation to help Invest in ME Research fund a UK clinical treatment trial.

It also includes funding of B-cell studies (also supported by Hendrie Foundation) undertaken at UCL by PhD student Fane Mensah with Dr. Jo Cambridge. This work was initiated as Invest in ME Research planned to fund a trial of the B-cell depletion drug Rituximab, but is also a valuable contribution in its own right. Fane’s paper on the initial B-cell study was the first of the Invest in ME Research funded PhD students to be published (read more on the charity’s research blog) and has his PhD viva 1st August 2019. Good luck Fane!

UPDATE: He did it! Congratulations Dr. Fane Mensah!


Fane Mensah at IACFS 2016 USA conference in USA with the Haukeland ME research team

A UK Rituximab trial did not go ahead as the results of the large multi-centre double-blind placebo-controlled Phase III trial in Norway failed to show differences between the drug and placebo group to justify further trials. Dr. Fluge’s presentation at the 14th Invest in ME Research Conference #IIMEC14 in May 2019 on the Rituximab and Cyclophosphamide clinical trials is on YouTube.

What’s next?


Professor Simon Carding IIMEC14 2019

In his presentation at the 14th Invest in ME Research Conference #IIMEC14 in May 2019, Professor Carding announced plans underway to start a clinical trial of faecal microbiome transplantation (FMT) at Quadram Institute in 2020.

Invest in ME Research has been able to pledge half the £871k estimated cost (including the Hendrie Foundation pledge for a UK clinical trial) so £435k is still needed and that is where they need your help again if you feel up to the challenge!

The trial brings all the Centre of Excellence elements together and involves a lot of interesting work including technology, collaboration and new outcome measures to take things forward.


Professor Simon Carding IIMEC14 2019

Here’s our web page about the trial.

We’ve created a dedicated page for donations to the FMT trial on Wonderful, an entirely fee-free fundraising platform so 100% of your donations go direct to Invest in ME Research.

We also have a page on JustGiving.

As ever, we know many of you will create your own fundraising pages or offline fundraising initiatives for the FMT trial, so please contact us if you’d like us to feature your fundraiser.

Money is tight for many of us long-term ill so if you’re able to share links to help spread the word that is also much appreciated.

Watch out for chances to simply vote for the charity in funding award contests and other ways to raise funds for free.

Help fund an FMT trial? Let’s Do It!

And there’s more…

UK may leave the EU but Invest in ME Research and the Centre of Excellence work remains firmly connected to Europe.

Invest in ME Research is a founding member patient organisation of the European ME Alliance, which joined the European Federation of Neurological Associations and formed the European ME Research Group in 2015 and the European ME Clinicians Council in 2019.

Prof Carding also announced at the conference a new GP Fellowship scheme and a joint UK-Sweden (European ME Research Group) PhD studentship. Read more about all these initiatives in the June 2019 Invest in ME Research newsletter.

Dr. Vicky Whittemore of the US NIH Institute for Neurological Disorders and Stroke (NINDS) has been involved with the London conference events in recent years. She said at a previous US conference that she liked what Invest in ME were doing in UK. NIH has subsequently funded three Centers of Excellence in US and hosted a Thinking the Future meeting in Washington. Newsletter here.

Daniel Vipond represented Quadram Institute and Invest in ME Research at the NIH researcher meetings in Washington.

Accompanied by Carding Lab supervisor, Let’s Do It for ME Bear!

This is just a snapshot of the past eight years and focusing on the Invest in ME Research Centre of Excellence work.

They do so much more besides in terms of advocacy and campaigning for biomedical research and medical treatment.

Their work, the Centre and the crowdfunding was raised by several MPs in recent UK Parliamentary debates on ME.

Even well funded diseases rely on substantial donations from the public to carry out research so even as the charity succeeds in mainstreaming ME research they will need support from donations, sponsorship and fundraising until their goals are met.

When you consider what’s been achieved by a small volunteer-run charity on a tight budget in a relatively short time, it’s nothing short of amazing!

But then they have always stressed the urgent need to make rapid progress after decades of neglect of ME patients.

Slide from presentation at NIH

Once again, please know that we are enormously grateful to everyone supporting our campaign to help Invest in ME Research achieve their goals, too many to mention here but you know who you are and please spread word to bring new friends on board.

You can take a look at many of the 2019 fundraisers. Georgina and Phoebe are the latest. On Sunday, these two intrepid 13 year olds kayaked 26 miles (1 extra mile than planned) in torrential rain and challenging circumstances to say the least, after weeks of training as total novices!! They did this to help raise awareness and funds for the charity’s biomedical research as Georgina’s sister was struck by ME aged 14. You can support them on Wonderful here.

On Saturday, Steve Martin takes part in the Cleveland Steelman event – Swim 2000 metres, Cycle 58 miles, Run 20k. He has already run the Greater Manchester Marathon and the London Marathon to raise funds for Invest in ME Research in support of our very own Paul Kayes and other sufferers. Not surprisingly Steve is a little nervous ahead of this event and is carrying a shoulder injury, he is however spurred on by the generosity of his friends and family who have sponsored him.

Thank you so much!!!

Please bear with as we proceed to update our other web pages after eight years of doing it for ME! Any questions, please contact us.

Thank you for supporting Invest in ME Research!

Merry Christmas!

With best wishes and many thanks to everyone supporting our fundraising for the
Invest in ME Research Christmas / New Year Funding Appeal.

As the charity explains on Day 24 of their Advent Calendar for ME the main objective of the appeal is to raise funds for another PhD studentship and further the development of A Centre of Excellence for ME.

Merry Christmas everybody and thank you for supporting Invest in ME Research!

 

IIMEC13 DVD Out Now

Invest in ME Research have begun distribution of the IIMEC13 DVD.

The DVD set includes full presentations at the charity’s 13th international biomedical research conference held in Westminster, London in June 2018, plus the pre-conference evening dinner speech this year by Carol Head, President of the USA organisation Solve ME/CFS Initiative. Prevous pre-conference dinner speakers from across the pond include Hillary Johnson, Linda Tannenbaum, David Tuller. DVDs of past conferences are also available.

David Meachen at DJM Digital has performed another excellent job in professionally authoring these conference DVDs which may be used to obtain points for continual professional development. David has been working with the charity since the first conference in 2006 to produce the best possible record of these CPD-accredited conferences. The DVDs are heavily subsidised by the charity in order to make them available to as many patients, patient groups, carers and researchers, healthcare, media and politicians as possible.

IIMEC13 marks 13 years of commitment to biomedical research into ME by Invest in ME Research. A remarkable achievement, level of commitment and perseverance by a small group of patients and carers, ably supported by scientists and clinicians working to the same high professional standards.

“Invest in ME has been able to increase awareness and disseminate knowledge to scientists, clinicians, and patients within the ME community. With limited resources, but unlimited creativity and imagination, these patients and their supporters have showed the world what can be done. They are an inspiration for the world.” Dr. Leonard A. Jason and Zachary A. Siegel.

The 2018 conference attracted delegates from twenty different countries – from Europe, North America, Japan and Australasia.

The conference day was preceded by the 8th Invest in ME Research International Biomedical Research into ME Colloquium – a two day closed researchers’ meeting with almost 100 eminent researchers invited to attend from fourteen countries. Through the multiple international collaborations the charity has formed there was an incredibly positive atmosphere beginning with the BRMEC8 Colloquium and continuing through the IIMEC13 Conference days.

The charity added an extra event this year, a day for young or early career biomedical researchers, called Thinking The Future. Dr. Vicky Whittemore announced at the conference that NIH would follow suit.

Organisations assiting Invest in ME Research in sponsoring IIMEC13 were Solve ME/CFS Initiative, RME Sverige, Norges ME Forening, Irish ME Trust.

Solve ME/CFS Initiative also supported Katya Lavine, Stanford ME/CFS Initiative researcher, with an SMCI MeetME Travel Award to attend the events. Katya’s excellent account of the events is here and she concluded,

“I am even more excited about the momentum of this community, the groundbreaking research on the horizon, and the brilliant minds devoting their lives to this disease. Solving M.E. is more than an issue of science. It is an issue of justice. Moving forward humbly in my own work on M.E., I am grateful for my time at IIME and for the passionate international community I have the chance to work alongside.”

The IIMEC13 conference showed the major initiatives and research taking place to continue an international collaborative strategy for biomedical research into Myalgic Encephalomyelitis which Invest in ME Research has been championing since after the 2007 #IIMEC2 conference.

The presentation by Professor Theoharis Theoharides was preceded by a moving tribute to the late Anne Örtegren, outstanding advocate, great friend to Invest in ME Research and staunch supporter of the Let’s Do It for ME campaign.

Just a few weeks before her death Anne wrote,

“I’ve followed LDIFME for all these years and you do an amazing job!

I also feel very strongly about IiMER and am just in awe of what everyone involved have accomplished. Where would we be without them/you?”

On a personal note to regular followers of our blog and supporters of our campaign to help raise awareness and funds for the Invest in ME Research Centre of Excellence for ME, it is obviously terribly hard to lose our friends and fellow supporters, and we hope you are ok.

Every time we are knocked down by another loss, we have no choice as a team but to get back up again and keep going until we have the medical tests and treatments that we need, not only to honour the lives lost, but for future generations and of course, in the hope that we may regain our own lives.

So we are back on the road to reaching the next £200k of our £1,000,000 target to support next phases of the biomedical research programme of the Invest in ME Research Centre of Excellence for ME. If you’d like to be more involved in supporting our campaign please contact us or the charity directly. Whether you’ve been with us over the past seven years since we launched our campaign or are newly aboard, we sincerely thank you for your suppport.

The agenda pictured below shows the IIMEC13 speakers and topics. Professor Simon Carding was unable to attend, so Fiona Newberry and Katharine Seton spoke on his behalf and that of fellow PhD candidate Shen-Yuan Hsieh.

You can find the full agenda and conference reports on the IiMER Conference website and a report by Dr. Rosamund Vallings & Dr. Sarah Dalziel here.

IIMEC13 gallery and comments by delegates here.

The Journal of IiMER is here.

Order the DVD here.

If possible, perhaps buy a copy for your doctor or MP or let them know this is available? Your doctor can obtain CPD points for watching and your MP can be better informed in preparation for a full parliamentary debate on ME research and treatment in the House of Commons, which Carol Monaghan MP is pressing for. See our summary of the 3-hour Westminster Hall debate in June here and our blog about writing to your MP here. The book by former MP and Chair of IIMEC13, Dr. Ian Gibson and his friend Elaine Sherriffs is available on Amazon, search ‘Science, Politics and ME’ and raise an extra donation to Invest in ME Research at no extra cost to you by buying via Amazon Smile or this referral link.

We end with a selection of tweets of the Invest in ME Research Conference events, starting with AA hero Scott apparently saving the day!

We have never been to the conference ourselves, by the way, as we are mostly long-term house or bedbound by ME, so we very much appreciate supporters able to be there in person and keeping us involved on Facebook or Twitter #IIMEC13 #BRMEC8 #ThinkingTheFuture2018 including ever-so-modest IIMER Bear, who debuted at last year’s conference, Emma Joy whose husband Adam has since cycled from London to Paris in 22 hours fundraising for IiME Research, Mike Harley flying the flag and Nancy Van Hoylandt brandishing the umbrella for the European ME Alliance and European Federation of Neurological Associations.

Thanks so much to everyone supporting Invest in ME Research.

Let’s keep doing it for ME.

https://twitter.com/iimerbear/status/1001100635209596933



IIMEC13 DVD
Journal of IiMER
Donate to IiME Research

Dear MP…

In a Westminster Hall debate on ME treatment and research on 21 June 2018, Sir Henry Bellingham, MP for North West Norfolk, called for government support for the Invest in ME Research Centre of Excellence for Myalgic Encephalomyelitis.

Sir Edward Davey (Kingston and Surbiton) and Dr. David Drew (Stroud) voiced their agreement, and Steve Brine, Under-Secretary of State for Health and Social Care, said it sounds very promising.

We’ve drafted a letter, which you are welcome to copy and paste or adapt to send your own MP to inform or update them on the progress of the Centre of Excellence and to ask them to support Sir Henry’s call on your behalf.

To find your MP’s contact details, put your postcode in the box on this page.

*****************************************************

Dear (MP name),

I write to request your support for the Invest in ME Research Centre of Excellence for ME (Myalgic Encephalomyelitis), as highlighted by Sir Henry Bellingham during a Westminster Hall debate on ME treatment and research on 21 June 2018.

Two main points of note are that the research and treatment of ME is a cross-party matter of public health for people and public services in every constituency; and that the Invest in ME Research Centre of Excellence for ME is of national and international importance.

The proposal to establish a hub-and-spoke model UK Centre of Excellence for ME, based at Norwich Research Park with international cooperation, was published May 2010 by UK charity Invest in ME Research.

The work is now well underway, currently involving researchers based in Norwich, Oxford, Cambridge, London, Surrey, and in collaboration with other countries.

As noted by Sir Henry Bellingham:

“That was funded by patients and carers, who raised a staggering £800,000 for what will be groundbreaking, world-class research.”

“Invest in ME Research has set up a centre of excellence for research in the Norwich Research Park, and it is planning to create a hub for European biomedical research, which is good news indeed. It already has five PhD students and is hoping to push out a consultant-led clinical service. Here we have the infrastructure and base for that extra Government funding, to build on the money that has been raised by patients and carers.”

“I hope the hon. Gentleman will support my campaign to get the Government to invest in the Invest in ME Research Centre of Excellence in Norwich. I did not mention that it has a really good chance of forging first-class links with not only European biomedical research institutes but institutes in the United States and Asia, where other groundbreaking research is being done. The Government should support and invest in success.”

Please read the June 2018 update on the Invest in ME Research Centre of Excellence, a bullet-point summary of the current status of this project, which has impressed USA’s NIH and is deserving of support by all UK political representatives and the relevant government departments: http://www.investinme.org/ce-cofeforme.shtml#exsu

The summary concludes on page 7:

“Invest in ME Research is therefore asking for support from MPs to engage actively with this project with a view to securing the final, and vital, elements of the UK Centre of Excellence for ME and create a future whereby people with ME may be given back their lives.”

The Let’s Do It for ME campaign aims to raise awareness of the Invest in ME Research Centre of Excellence for ME and a summary of the Westminster Hall debate with relevant extracts is here: http://ldifme.org/parliamentary-debate-on-me-research-and-treatment/

Thank you for reading and I look forward to your reply.

Yours sincerely,

(Your name and address)

******************************************************

As stated in the letter, our summary of the debate is here and includes the extracts below. Hansard transcripts of the extracts.

Sir Henry Bellingham

Extract: https://goo.gl/yvW33P

Hansard Transcript: https://goo.gl/B8mDdw

Sir Edward Davey, Andrew Selous, Sir Henry Bellingham

Extract: https://goo.gl/XbwWZW

Hansard Transcript:https://goo.gl/QKQmav

Sir Henry Bellingham, Dr David Drew

Extract: https://goo.gl/gZSVRe

Hansard Transcript:https://goo.gl/NaUJrf

Steve Brine (Parliamentary Under-Secretary of State for Health and Social Care)

Hansard Transcript: https://goo.gl/VMT96v

Click here to read our full summary of the debate.

Donate here to help us make it to a £million.