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

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!

£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