Invest in ME Newsletter - September 2014

(available in pdf form here)


Invest in ME

September 2014 newsletter #2

published 22/9/2014


Research Colloquium 2015
Invest in ME/UCL Research
UK Gut Microbiota Research Update
Old (New) and New Research
Fund/Awareness Raising
JustGiving Pages
Christmas Cards 2014
Margaret Williams

Research Colloquium 2015

Extended Duration

Invest in ME announced its plans for IIMEC10 - our tenth International ME Conference 2015 - for Friday 29th May 2015 in London. 

We also announced our fifth research Colloquium preceding the conference for Thursday 28th May 2015.

The trustees have decided, after consultation with our Advisory Board, to extend the research Colloquium to two days, and the event will now be Wednesday 27th May to Thursday 28th May.

This was the format that was employed in our 2012 Colloquium - the Clinical Autoimmunity Working Group meeting [Clinical Autoimmunity Working Group (CAWG) [ meeting in 2012. 

Both events will be in London and we now have interest from eight countries in participation and we continue to build international collaborations to discuss and resolve this disease.

The IIMEC10 celebrations will include a pre-conference dinner following the research colloquium and the full day conference itself - for the tenth year in succession taking place in the heart of Westminster.

Ten years of of researchers, clinicians, healthcare professionals, patient groups, patients and the media being able to discuss, network and debate. 

The conferences have made patients into partners in research – something which is been ongoing and has been happening regularly since the early IiME conferences.

Invest in ME/UCL Research

New Research Study

Having reached our initial target for the IiME/UCL Rituximab trial, and with the preliminary B-cell study in progress, Dr Jo Cambridge produced a project status update [click here].

The charity has formed a good working relationship and initiated state-of-the-art research with worldclass researchers who are the most experienced in the world in this area. Following discussions within our Advisory Board on future directions then we announced earlier in the month our intention to fund a PhD studentship.

We have asked our supporters again to help us enable this crucial research. We are happy to accept pledges as well as actual donations.

As part of our objectives to form a solid base of biomedical research we are committed to making this additional research possible as it will secure the research we need into this disease and will also reinforce our plans for a Centre of Excellence for ME.

An update on this has now been produced for Invest in ME by Dr Cambridge and describes the intentions with this research - click here.




Rituximab Web Site



UK Gut Microbiota Research Update

Our Biomedical Research Foundation Project at IFR/UEA, the UK gut microbiota study, is now ending its first year. 

The foundation project was devised in 2010, long before it became fashionable as an area of research for ME, and was galvanised by the launch of the Let's Do it for ME (LDIFME) campaign in 2011 to help the charity with fundraising. It took us and our supporters three years to reach the first funding target of £100 000.

We used Dr Lipkin's (Director Centre for Infection and Immunity at Columbia University) quote a year ago when the project began ["I think the gut microbiome is going to be where the action is (in ME)" - Lipkin Presentation CDC Conference Call 10/9/2013 ]

We are pleased to see this research being performed by a world class research establishment at the Institue of Food Research/UEA in Norwich Research Park.

The research team has provided an update on the current status of his work - click here.

After getting the first project up and running it has been easier for the charity to plan for follow on projects. The forming of our Advisory Board as mentioned in our previous newsletter has been very helpful. The charity has been discussing with our advisors and we have provisionally agreed with UEA the creation of two new PhD studentships for this research in the research park which will cement the foundations of biomedical research into ME for the next three years.

A project description is being formulated to complement the foundation project and the charity has agreed to fund these subject to peer review.

The strengthening of the research base and the continuation of the biomedical research into ME work that has been started has been a priority for IiME. 

We are also agreeing with IFR/UEA the funding of new intercalating medical  students who would spend time at Oxford university in UK and Cornell University in New York, USA in ME related research projects. This would mean that the charity is funding three medical students to perform biomedical research into ME - thus allowing real knowledge of the disease to be spread around medical schools.

Our objective has been, since 2007, to establish high-quality international collaboration to resolve this disease - we are the on the way to achieving this. 

Read More

Possibly the two most important research projects for ME in the UK"


Old (New) and New Research

from Dr Kerr and Professor Marshall-Gradisnik

Dr Jonathan Kerr was a regular presenter at our early conferences but moved on from ME research. A paper from Dr Kerr's research has , however, just been published.

J Clin Pathol doi:10.1136/jclinpath-2014-202597 - click here

Use of single-nucleotide polymorphisms (SNPs) to distinguish gene expression subtypes of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) -  Nana Shimosak  Jonathan R Kerr

Abstract - Aims

We have reported gene expression changes in patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and the fact that such gene expression data can be used to identify subtypes of CFS/ME with distinct clinical phenotypes. Due to the difficulties in using a comparative gene expression method as an aid to CFS/ME disease and subtype-specific diagnosis, we have attempted to develop such a method based on single-nucleotide polymorphism (SNP) analysis. 

 Abstract - Conclusions

This study provides evidence that human SNPs located within CFS/ME associated genes are associated with particular genomic subtypes of CFS/ME. Further work is required to develop this into a clinically useful subtype-specific diagnostic test. 


Meanwhile Professor Sonya Marshall-Gradisnik's research, presented at our IIMEC9 conference (and the embargo of which caused a slight delay in our conference DVD delivery), has now been published [1].  

Abstract - Background
MicroRNAs (miRNAs) are known to regulate many biological processes and their dysregulation has been associated with a variety of diseases including Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). The recent discovery of stable and reproducible miRNA in plasma has raised the possibility that circulating miRNAs may serve as novel diagnostic markers. The objective of this study was to determine the role of plasma miRNA in CFS/ME.

Abstract - Conclusion

Our study is the first to identify circulating miRNAs from CFS/ME patients and also to confirm three differentially expressed circulating miRNAs in CFS/ME patients, providing a basis for further study to find useful CFS/ME biomarkers.      

1. Brenu EW, Ashton KJ, Batovska J, Staines DR, Marshall-Gradisnik SM (2014) High-Throughput Sequencing of Plasma MicroRNA in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. PLoS ONE 9(9): e102783. doi:10.1371/journal.pone.0102783 [click here]


IiME suppporters continue to inspire with their fund-raising and awareness projects.

Arctic Marathon

We have previously written about Mike Shepherd's plan to run the North Pole Marathon in April 2015 to raise funds for Invest in ME [see February newsletter].

This will be quite a challenge for Mike and involves a gruelling training schedule - and supportive family. You can support him here or just raise awareness via sharing the link.  

European Multi-Marathons

Mike Harley (who led the amazing 92 in 92 event which visited all 92 football league clubs) is also planning an extreme marathon - extreme in terms of numbers - click here - by attempting to conquer Europe by running a full marathon in every country in the EU (currently 28 in total). In this we will ask our European ME Alliance colleagues for support.

Deborah's Born Survivor Marathon Page

"Thanks to the magic of Facebook I have been back in touch with a childhood friend who I have not spoken to in over 25yrs (who knew I was that old!!) Sadly she suffers with ME and even though we made contact in April this year but due to the debilitating illness she has we are yet to meet up in person, and she only lives 7 miles away! 

I am lucky enough to be able to attempt 120 obstacles over 42km so I can raise some money to help fund research and treatment then maybe one day she will be well enough to join me."  

Some fundraising news from the Let’s Do it for ME blog

A selection of fundraising news from the Let’s Do it for ME blog

From ME to You, With Love - new website launched! By Louise Harding

“Since the book 'From ME to You, With Love' launched in May, it has done incredibly well. Almost 250 copies have been sold, and the amount of money donated to Invest in ME is now around £300 so far. The book is available either in paperback or on Kindle.”


I swam the length of Coniston, all 5.25 miles of it! By Sarah Loveland

“On Saturday the 6th September Sarah Loveland swam the length of Coniston Water, all 5.25 miles of it, for Invest in M.E.

Sarah is a so-called ‘wellie’ but she has friends with M.E. 

Over the past year, her eyes were opened to what a debilitating illness it is as she read stories of individual challenges to raise funds, such as one person walking to the garden gate. This inspired Sarah and she set her swimming challenge, Sarah decided that if courageous people with M.E could challenge themselves to raise funds then she could swim the length of the lake for them.  By trade I’m a photographer  at Sarah Loveland Photography and this was only her second year of open water swimming. Last year when I started I wasn’t very good and I could only do half a length of the pool front crawl. I built that up to complete several one mile events. At the start of this year 5.25 miles seemed impossible but I was determined. Stubborn, determined and perhaps a little but crazy!”


 Hurst Family Fundraising for ME! By Jane Hurst

“I have suffered with this horrible illness – ME – for over 16 years. I also have Dysautonomia, and was recently diagnosed with Elhers Danlos Syndrome. I have too many symptoms to list, most of them invisible, but the symptoms that cause me most distress are the severe chronic pain and the disabling and very uncomfortable circulatory/cardio vascular problems. I spent the first 2-3 years of the illness completely bed-ridden & all of the past 16 years housebound (mostly bed-ridden) but due to the pain I experience now I am unable to lie down and sitting down is too painful a lot of the time, so life is extremely difficult, having to stand hunched over my bed for hours each day even though this causes me to feel very faint & exhausted. I try to be positive but if I’m honest most days are nothing short of an endurance. This is also the case for many of my fellow Severe ME/EDS sufferers.”

Just Giving

We thank all the great supporters of IiME who have set up Just Giving pages to raise funds for our work. Please support these events as much as you can. Even if you cannot afford to donate you can help by highlighting these great efforts/events.

Christmas cards 2014

The 2014 Christmas card competition has closed and Julia Cottam and the team have again produced some fantastic results which will once again raise the profile of ME as well as potentially help raise vitals funds for biomedical research into ME.

We are just deciding the format and sizes of the cards but we have already decided the price and these can be seen on our Christmas 2014 page.


We also still have some Christmas cards over from last year which are available - including the Independent Newspaper's Indybest Christmas card winner Candle House by Julie-Ann Gylaitis.

Read More


Margaret Williams

We have reason to hope that permanent change is on the way thanks to the efforts of IiME supporters. Knowledge or Belief

The new research we have been able to initiate independently has real possibilities to change the way ME is perceived by the medical profession and the general public and we know this is already influencing what is happening elsewhere. 

During all the years before IiME could initiate this research we, along with other individuals and organisations, had to campaign and lobby to try to break the stalemate which establishment organisations had quite happily allowed to continue.

One of the most notable advocates has been Margaret Williams.

Her factual commentaries on what has been happening with ME have been indispensible. Margaret Williams's articles have empowered patients to challenge dogma and poor science and overcome the inaccuracies and policy-based evidence making which has been allowed to exist regarding ME. An enormous debt is owed her - something which will become more and more apparent as time passes and change is made.

We are no great seekers of awards but there are few with better credentials for deserving worldwide recognition than MW. 

(An example of MW's articles - THE IMMUNOLOGICAL BASIS OF ME/CFS: what is already known? A compilation of documented immune system abnormalities in ME/CFS from 1983-2011 - is in the Journal of IiME Volume 6 Issue 1 2012 )


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September 2014