Great Start to 2015!

Wow, thanks to everyone supporting, what a busy start to the new year, hard to believe that January's over so soon! This is a landmark year, as 2015 marks the 10th year of Invest in ME charity and the 10th of their renowned international biomedical research conferences (IIMEC10). You can read more in the first Invest in ME newsletter of 2015, published in pdf on 27th January - http://bit.ly/1wAnt7L  You can sign up to receive their free e-newsletters by email. 

Jam-packed as usual with news of their amazing work on campaigning, advocacy, education, and with updates on the research and fundraising on pages 8 and 9 of the pdf. You'll see links to some of the new fundraising events organised so far for 2015 including: Walk for ME, Twighlight Colourthon, Brighton Half-Marathon, Sheffield Half-Marathon, Brighton Half-Marathon, Thames Path Challenge, Tough Mudder South-West, 2015 miles of running in 2015, A Birthday Challenge. 

Also new for 2015 is the New Year, New ME fundraiser, an all-year round extension to the very successful Stoptober for M.E. Awareness and fundraiser organised by Ali Head, whereby supporters gave up something they enjoy and donated what they saved to Invest in ME. Aimed at the family and friends of people suffering with ME in hope that they will support the search for treatment and an end to the neglect of this devastating disease. Event info here -
https://www.facebook.com/events/852973618102072

Watch this space for the launch of The Big Sleep for ME 2015. Meanwhile, Team Princess is polishing up their tiaras in readiness to play their role. You can find them on Facebook here - https://www.facebook.com/meprincesses 

Two more major awareness and fundraising events are Mike Harley's EU Marathons and Mike Shepherd's North Pole Challenge. You may remember Mike Harley from last year as Team Leader of 92 for ME, the amazing tour of 92 football league grounds in 92 hours. He's now embarking on a mammoth challenge to run a marathon in 28 EU countries! Mike's EU Marathons Facebook page is here - https://www.facebook.com/mikeseumarathons

Mike Shepherd's North Pole Challenge is set for April 2015 and is all the more remarkable as he will be the first person with a heart pacemaker fitted to run a full marathon at The North Pole. Mike's wife Lara has fibromyalgia, and he is doing this amazing challenge for the sake of his teenage daughter Elizabeth, as she has had ME for several years of her young life. Mike's North Pole Challenge Facebook page is here - https://www.facebook.com/Northpolechallenge

Sue Page's Small Change to Change M.E. Fundraiser will run again throughout 2015. The £2014 target was reached by 31st December 2014, so Sue has raised the target for this year to £3000. Loose change – it all adds up! The event page is here - https://www.facebook.com/events/1536858226585701/

You're welcome to let us know if you're planning any events for Invest in ME, or if you'd like to help out in any way with our awareness and fundraising in support of the charity.  We are mostly severely ill and the charity itself is also run by volunteer patients or parents/carers, with no paid staff.

Current Invest in ME Research Fund Totals are:

Gut Microbiota Research - £130k raised of £200k target.
Rituximab Research - £368k of £450k target. 

So, just £2k shy of a whopping £500,000 raised for Invest in ME Biomedical ME Research Funds since our campaign launched in July 2011 support of the charity's proposal (published May 2010) for a centre of excellence for translational biomedical ME research and patient care! 

Oh, is 1st of the month? The day to donate just £1 to IIME's 1st class biomedical ME research!

http://blog.ldifme.org/2012/06/one-day-one-pound.html

Thank-you for your support.

 

Let's Do It for ME

ldifme.org 

in support of Invest in ME (Research)

investinme.org

Invest in ME International Biomedical Research Conference (IIMEC)

investinme.eu

IIME/UCL/UK rituximab trial 

ukrituximabtrial.org

 

  Let's Do It for ME is a patient-driven campaign helping to raise awareness of the work of independent UK charity Invest in ME (Research) on developing a UK centre of excellence for M.E. and funds for the biomedical research into myalgic encephalomyelitis that the charity is organising and/or funding. Invest in ME is run entirely by unpaid volunteers who either have ME or are parents and carers of ME patients. They are driving the agenda of scientific biomedical research into diagnostic tests and treatments for myalgic encephomyelitis in UK in collaboration with international researchers of world renown. 2015 marks the 10th year of amazing progress made by this small charity with a BIG cause. Will you help them make it the best yet? Let's do it for Invest in ME!

Invest in ME March 2014 Newsletter

Invest in ME Newsletter - March 2014 (available in  pdf form here) Invest in ME March 2014 newsletter published 22/3/2014 IN THIS ISSUE 9th Invest in ME International ME Conference 2014 Conference Agenda IIMEC9 Conference Events Biomedical Research Colloquium 4 Funding International Research Fundraising Update for Our UK Rituximab Clinical Trial ME Awareness Month '92 in 92' Challenge for Invest in ME Conference Questions 9th Invest in ME International ME Conference 2014 The 9th Invest in ME annual biomedical research conference in London on 30th May is attracting delegates from fifteen countries.  The speaker line up is now finalised with the latest addition being Professor Maureen Hanson from Cornell University, USA. Professor Hanson is a molecular biologist who has a current gut microbiome project including ME patients and controls. She is also involved in an immune cell gene expression project and the one she is going to talk about at the conference involves markers of post-exertional malaise.  The charity is currently initiating possibly the two most important research projects for ME in the UK and the CPD-accredited IIMEC9 conference promises to be the best conference yet with biomedical research into the disease finally having become mainstream.  Another of the presenters, Professor Simon Carding - principal investigator of the Invest in ME funded IFR/UEA gut microbiota project, features in this month's Cell podcast [http://cellreports.cell.com/]   Gut feeling: Discussing communication between bacteria and the gut with Simon Carding [http://download.cell.com/images/edimages/podcasts/0227cell2014.mp3].                 In the podcast, Professor Carding discusses his recent Cell Reports paper, A Bacterial Homolog of a Eukaryotic Inositol Phosphate Signaling Enzyme Mediates Cross-kingdom Dialog in the Mammalian Gut. [http://www.cell.com/cell-reports/abstract/S2211-1247%2814%2900038-2] The Cell Reports interview segment begins at the 11:28 mark. Synergising Research into ME is the theme of the conference and the BRMEC4 Colloquium endorses the charity's view that it is possible, and necessary, to concentrate on facilitating and enhancing biomedical research into ME to maximise the potential to find treatments and causes. This reflects the international collaboration in biomedical research into ME which the charity believes will be at the heart of future discoveries leading to treatments for the disease. Our thanks to the Irish ME Trust for once again supporting the charity and the conference. More information about the conference and how to book can be found on the conference web site - click here. Conference Agenda The conference will open with the keynote speech by Professor Jonathan Edwards from UCL, one of the charity's advisors. We will have Dr Julian Blanco from Irsi Caixa Research Institute who will summarise the conference events from an outsider's view.  This year we will be holding a panel discussion regarding Diagnosis and Treatments within the NHS - a chance to look critically at the offerings available, at how research can influence clinical practice. This will provide delegates with the possibility for more interaction with ME consultants - Dr Amolak Bansal of Epsom and St. Helier and Dr Saul Berkowitz from UCLH, both of whom are involved in the charity's research and who regularly see ME patients. Almost every patient in UK (and probably elsewhere) will be seen by their GP when they get ME. Often they will be diagnosed by a GP - before, if lucky, being referred to a consultant who is knowledgeable about ME. Whether they are referred to a consultant or not (and there are very, very few ME consultants in the UK) then the GP is likely still to play a large part in the continuing care and management of the ME patient. So GPs will play an important role and we would ask people to help us in raising awareness of the conference amongst GPs to ensure they are aware of the biomedical research being carried out into ME. IIMEC9 Conference Events The charity attempts to maximise the opportunity for raising the profile of biomedical research into ME at the conference events and this year we have three other events in addition to the annual biomedical research conference which we are organising and hosting.  After the conference the European ME Alliance will be meeting to hold its AGM.   On the evening prior to the conference the charity will hold its pre-conference dinner in London and this year we are very pleased to announce that Dr Nigel Speight will be our guest speaker. Dr Speight has presented at other events organised by IiME including a past IIMEC* conference and he continues to be a source of reason and support in a world which has been corrupted by misinformation about ME. Although retired he still gives his time in support of horrendous cases of young people at risk. The charity has been established now for nine years and we continue to have to deal with and support the terrible cases of severely ill ME patients whose treatment has suffered from misinformation, poor education about ME amongst healthcare professionals and incredible apathy from those entrusted with the responsibility for research and treatment of this disease. Too often it is children and young people who are on the receiving end of this abuse and it has often been Dr Speight who has been the last line of defence for many, as well as the last hope.  Dr Speight will also be at the conference.  Dr Speight's presentation will be on the conference DVD which the charity's trustees have decided to produce for this year's conference. During April/May we will have an earlybird offer for the DVD.  Previous conference reports and the order form for past conference DVDs are available here - click here. Conference news is here - http://www.investinme.eu/news.html   Biomedical Research Colloquium 4The charity's advisors, Dr Ian Gibson and Professor Jonathan Edwards, will be co-chairing the BRMEC4 Colloquium on the day before the conference.The Colloquium promises to be an extraordinary gathering of top scientists and clinicians and we feel that this is surely the future of research into ME.  International collaboration in biomedical research will lead to rapid advances in finding the cause of this disease and in development of treatments. This has been a key objective of the charity since our 2007 conference and it is heartening to find that biomedical research into ME is now squarely in the mainstream of  current day research. The CPD-accredited Colloquium is a credit to the collaboration over the years between Alison Hunter Memorial Foundation of Australia and IiME.   With researchers and physicians from nine countries attending we hope to make further progress in crowdsourcing ideas and synergise  research into ME.  More information here - http://www.investinme.eu/news-03.html  We are especially happy to continue to attract new researchers to the field of biomedical research into ME. Funding International Research Dr Blanco is in the IrsiCaixa AIDS Research Institute and that institute and ASSSEM (Spanish Association of Health Professionals and Patients in Support of Myalgic Encephalomyelitis/ Chronic Fatigue Sydrome - a non-profit organization established by people living with ME/CFS and professionals) are joining forces to research the relationship between the immune system and this illness. The objective of the study is to establish new tools for diagnosing, as well as understanding better the causes of ME/CFS and possible therapeutic directions. The planned project gives continuity to the study published last year by the same researchers which proves that there are 8 molecular alterations in people with ME/CFS which seem to be related to a faulty functioning of the immune system. IiME have pledged funds to help this research get off the ground. More details here - click here Invest in ME's funding opportunities for biomedical research into ME and grant policy are described on our page here.       Fundraising Update for Our UK Rituximab Clinical Trial Fundraising for a UK rituximab trial is progressing well. We have so far raised £288,000 out of our initial target of £350,000.  This is due to our wonderful supporters. It is also due to a very kind and generous donation of £25,000 toward an initial B cell study as well as a pledge of £200,000 for the actual clinical trial.   We now have permission to announce that the donation is in memory of the late Roger Hendrie who sadly passed away in March 2013.   The preliminary study to confirm and expand upon a study by Dr Amolak Bansal and colleagues that suggests that B cells may be functioning abnormally in a significant proportion of people with ME/CFS has now been through the IiME external peer review process and is just going through the final stages of the administrative process at UCL and is practically past all of the checks necessary to bring this to a start. A tremendous effort on the part of our supporters, the lovely people providing the donation, the wonderful Let's Do It For ME spirit, our advisor Professor Jonathan Edwards and the positive, professional and proactive approach of the UCL team.   Our web site for the rituximab research is here - www.ukrituximabtrial.org   The supporters of IiME and the Let's Do It For ME team have been responsible for influencing the path of research into ME over the last two years - finally allowing it to be turned slowly in the right direction. The charity has now initiated and funded what are possibly the two most important research projects for ME in the UK - see here. In last month's newsletter we mentioned several fund raising initiatives underway. One of these is the Direct Debit Big Break Voting Competition.  Direct Direct are once more giving to 100 charities and good causes in 2014. Each month from March until June they will donate £5,000 to the causes that are decided to be the most deserving. The cause that receives the highest number of votes each month will receive £2,000; the cause in 2nd place will receive £1,000; and the remaining £2,000 will be divided amongst the runners up. The number of runners up may vary each month. Voting commences on 1st March and closes at 23.59 on the last day of each month so please vote by midnight 31st March 2014.   It is easy to vote and you don't have to be UK resident (unless you text your vote with code BIG BREAK 0196 to 78866).  You can log in to vote by Facebook, Google, Twitter (only one vote per IP address) or send in a vote by post. Postal votes must be received 5 working days before the last day of the month.    All involved with Invest in ME give their time for free, and all donations go towards raising awareness of ME, improving education about ME or facilitating and funding biomedical research into ME.  Invest in ME have no salaries or large expenses - all work is voluntary.   Please help us by voting for the Invest in ME in this contest so that we can continue to progress research into this disease and bring hope to all who are affected by it and please share the links with your family, friends and support groups.    Click here to vote: www.bit.ly/Vote4InvestInME  More about The Big Break http://www.investinme.org/IIME-Newslet-1403-01.htm  or  herehttp://blog.ldifme.org/2014/03/the-big-break-2014-lets-vote-for-invest.html    And don't forget the Big Sleep again initiated by Julia Cottam during ME Awareness Month of May. Website -http://www.thebigsleepforme.com/     Facebook  https://www.facebook.com/TheBigSleepForMe   The positivity of the LDIFME campaign is helping us in getting much needed awareness among the wider public whilst raising funds at the same time. Healthy supporters want to take part in positive and fun things to help those too ill to do much themselves. Positive campaigning makes a difference! Thanks to all our supporters and congratulations.    ME Awareness Month The BIG Cause - IiME's slogan for raising awareness for biomedical research into ME. We continue to use posters from last year - available from the web site - click here The BIG Cause highlights the need for a strategy of biomedical research into ME to be funded and implemented.   Posters available in black or white and can be used at any time.   '92 in 92' Challenge for Invest in ME The 92 team are raising awareness and vital funds for biomedical research into ME by visiting all 92 FA football clubs in 92 hours.  The team has already gained pledges from half of all the clubs and continue to raise valuable awareness of ME on Twitter and across the country.  A flag and a flyer have been produced for the tour. The event begins on April 16th 2014. ITV Anglia will be with the team at Norwich City's Carrow Road for an interview and Talksport Radio have also expressed an interest in interviewing the team during the event.   So far   Bristol 24/7 have asked for a feature on the event for their website on the event Coventry Telegraph have featured the event and possibly sending a photographer to the ground Examiner Huddersfield are happy to feature the event MK News: Happy to feature our event  Plymouth Herald: Sending a reporter and photographer to the ground to meet us Rochdale Online: Featured on their website http://www.rochdaleonline.co.uk/news-features/2/news-headlines/85673/92-english-football-grounds-in-92-hours  Rotherham Advertiser: Happy to feature our event  Shropshire Star: Happy to feature our event South Trinity Mirror: Happy to feature our event Southampton Daily Echo: Happy to feature our event Bradford Telegraph and Argus: Featured our event in their paper (04.03.14) and website (link to follow), sending photographer to the ground to meet the team and there are more - see the latest on the support via the blog. Please encourage your local media to get in touch with Mike or IiME. Football clubs,  hotels, TV companies have already shown interest in this positive way of raising awareness and funds for ME.  One can follow the news of this event on Facebook (www.facebook.com/92forME) and on the blog http://www.92in92.blogspot.co.uk/ and Twitter (@92forME). Donations to support the amazing event can be made at this link click here.       Conference Questions Finally an offer to those who are not able to get to the conference. Besides the early bird offer of the DVD of the conference (above) we also will try to pose questions that people may have to the presenters.  If you have a question you would like one or other of the presenters to answer then, providing there is time and the question is relevant, then we will attempt to gain an answer. Please use the form in the link to send us a question.  Please keep this short as time at the conference is limited. And please keep the question relevant.  We cannot promise to have the question put to any speaker but we shall try our best - click here. Invest in ME Go to Newsletter Home Page Invest in ME UK Registered Charity      Nr. 1114035 PO BOX 561, Eastleigh, SO50 0GQ www.investinme.org        Inquiries: All inquiries to Invest in ME - info@investinme.org To unsubscribe from this newsletter send an email to info@investinme.org and entitle the email unsubscribe. Support ME Awareness - http://www.investinme.org   Support ME Awareness - Invest in ME

March 2014

IIMEC8 DVD now ready for delivery!

2013 Conference DVD

The 2013 Invest in ME conference DVD set is now to ready for distribution. They are sold at the lowest possible price:  UK: £14, Europe: £15, Outside Europe: £16, all including p&p/shipping.  To order and see details of the speakers and their presentations, click here.   

Kate was among the carers who attended the conference, as her husband has ME.  She commented the following day:

"Am going to order a number of copies of the DVD when it goes out, and can only recommend that people do likewise, so we can start rolling out the education that came out of yesterday's conference where Invest in ME had pulled together so much vital research under one roof. Fantastic. For me it was a huge big chunk of blue sky!! Keep positive all my friends and just hug the organisers of this event for what they achieved yesterday".

Includes Article on LDIFME

Annabel, who has ME, said of her husband:

 "Ross came back effervescing with enthusiasm and praise for the conference and the speakers. He also kept dipping into the journal and reading me sections. I need to have a look but I have a suspicion that that may well find its way into local medical hands. Thank you IiME."  You can read the online version of the 2013 conference edition by clicking here. 

Invest in ME replied:  "Thank you to everyone who came and supported this conference. It was a very uplifting day in many ways. Also the biomedical research meeting was excellent, and the pre-conference dinner event. The charity is also appreciative of all the positive comments from the speakers - some of them first time to the conference - and their comments of support for IiME. Also wonderful support from Norway and Sweden - many patients and carers coming here in large numbers. Thank you again to all those supporting the same objectives - more high-quality biomedical research into ME, more education about the real situation with ME and more awareness of the need for more funding of bomedical research".  A meeting of the European ME Alliance was held the following day and so there are many positive outcomes in the pipeline.

In their the July newsletter, Invest in ME wrote:

The IIMEC8 conference and Biomedical Research into ME Collaborative meeting (BRMEC) were the most successful yet. Mainstreaming ME Research was the theme and title of the conference - Infection, Immunity and ME - reflecting our view that ME research is finally accepted as part of proper science and deserving of consideration for careers in research and for funding.

There was a great sense of optimism about the future of ME research. New researchers are learning about ME and becoming interested in this area of medicine. The data is pointing clearly to immune system dysfunction and the detective work is well underway to help solve at least some of the mysteries in this very complex illness.

Many of the body's systems are involved and there is a great deal of work for researchers from many different areas in different countries.

Diagnosis is still problematic as patients vary a lot and without careful history taking and the right kind of questioning many treatable conditions may be missed. On the one hand doctors need to be very careful before giving patients an ME diagnosis and on the other hand one has more success of treating patients successfully if the condition is recognised early. The feedback from the events confirm IiME's views -

Mainstreaming was the right thing to do
Informal meetings were important
International collaboration was important
A positive feeling existed that real progress being made with biomedical research

The situation of severely ill bedbound ME patients was also discussed by some of the presenters at the 2013 IiME conference. Some extemporaneous notes on severe ME from the conference, and after, are available here.  Doctors simply do not know what to do with these patients so there is an urgent need for education. 

A full conference report was written by Dr. Rosamund Vallings of Auckland, NZ.  She concluded:

" Towards the end of the proceedings, Ellen Piro (Oslo, Norway) presented Invest in ME with a special

award acknowledging all the effort in organising these conferences, bringing together so many 

distinguished researchers and clinicians from around the world, encouraging collaborative research 

and enabling patient participation. An award was also given to Professor Malcolm Hooper for his 

great efforts over the years.  I would like to add my thanks to all these people, and in particular to both Invest in ME and the Alison Hunter Memorial Foundation. I must also thank ANZMES for giving me the opportunity to attend such a wonderful event."

Click here to read Dr. Vallings full report in pdf.

Click here to read Mark Berry's report on Phoenix Rising. 

Click here to order the order 2013 conference DVD.

Click here to read the Journal of IiME 2013 conference edition online.

Click here to subscribe to the Invest in ME newsletter.