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.

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!

Rituximab Trial Status November 2017

What had looked to be a promising line of research that could lead to an effective treatment for a subgroup of patients defined by the Canadian Criteria and major understanding of the pathology of this disease has proven to be inconclusive. IiME Research – http://www.investinme.org/IIMER-Newslet-1711-03.shtml

Surprising news from Norway today, but the ground-breaking work continues in UK thanks to all involved and everyone supporting Invest in ME Research, so please don’t be too disappointed, as the charity explains in the following statement published today and reposted below.

Professor Olav Mella recently publicly released early details from the Phase III multi-centre double-blinded placebo-controlled Rituximab Clinical Trial which has been ongoing in Norway for the past year.

Invest in ME Research have been informed by Dr Oystein Fluge of this.

Invest in ME Research have issued this preliminary statement (below).

The Haukeland team will be presenting at the IIMEC13 13th International ME Conference in London on 1st June 2018.

Invest in ME Research Initial Statement
on Norwegian Phase III Rituximab Clinical Trial

November 21, 2017

The statement from Haukeland University, Bergen from Professor Mella is a major disappointment for people with ME and their families.

What had looked to be a promising line of research that could lead to an effective treatment for a subgroup of patients defined by the Canadian Criteria and major understanding of the pathology of this disease has proven to be inconclusive.

Naturally, at the charity, everyone is disappointed. We are disappointed for all the ME patients and carers and families and friends.

We are especially disappointed for all of our supporters and all who have made such generous and tireless efforts to raise funds and awareness of our campaign.

We are very disappointed also for the Haukeland research team – a wonderful team who have brought hope to all patients – and, importantly, brought new insight into this disease and new interest from other areas.

However, we have found, throughout 12 years of trying to change the way that ME is perceived, researched and treated that it is never easy.

It would be easy to give up, to resign oneself to nothing changing, to accept the status quo.

But we think differently.

At the 2017 Colloquium/Conference we invited Karolinska Institutet in Stockholm to present negative results. Because it is important to use negative results for positive effects. Negative results are data and the Norwegian rituximab trial has generated a lot of data that needs to be looked at very carefully.

When we first engaged Professor Jonathan Edwards into research into ME one of the earliest comments he made was that he was pleased to note that our conference did contain negative results.

We see the positives in this research which has been performed by researchers of the utmost integrity who have not made headlines for the sake of it but have thoroughly conducted outstanding research, and still retained a humility that is to their credit and that of their colleagues and team.

We have an excellent research team in Norway which has served the ME patient community and their families with honesty, integrity, professionalism, detemination and an empathy which had never been seen before in this field.

We have established good working relationships between the Norwegian researchers and the UK Centre with input from UCL and UEA/Quadram Institute.

We have data now – more than before.

We have research which IiMER has established and a foundation for the Centre of Excellence for ME.

We have international collaboration in research into ME that will continue.

And we have new plans – already in the making.

The researchers from Haukeland will give more detail on their results and publish a paper or two which will benefit all studying ME.

For us we have invited the Haukeland team to Norwich to discuss the way forward.

We remain positive. Another setback, another day.

We have already been in discussion with our advisors and with the Norwegian team and we will meet to clarify the best way forward in the near future with our major funder and researchers.

We still have much good research being funded and being planned and feel our stategy is, and will pay off and lead to most rapid route to finding cause(s) of ME and effective treatments.

In another age, and in another struggle which has some parallels to that which is forced upon people with ME, these words strike a chord –

“ We must accept finite disappointment, but never lose infinite hope. ”

– Dr Martin Luther King

Source: http://www.investinme.org/IIMER-Newslet-1711-03.shtml

We are sorry to share disappointing news but encouraged that this presents the next step to achieving tests for differential diagnosis and effective treatment options for people with ME.

The charity’s B-cell/UK Rituximab Trial microsite is now here: http://www.investinme.org/ukrtbcell-ce-index.shtml

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