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

The Big Sleep for ME is back!

The Big Sleep for ME is back for its third successive year.  With your help, and that of its business sponsor Vintage Wedding and Home, it’s going to be even bigger and better.  This fun and inclusive awareness and fundraising event for biomedical research, includes a mass sleepathon that runs throughout ME Awareness Week 11 – 17 May, as well as an opportunity to hold your own ‘sleep inspired’ event, such as PJ parties, PJ Pride Days, Sleepwalks, Sleep-cycles and more.

The Sleepathon is extremely easy and flexible to take part in and means that anyone, even those with severe ME, can do their bit.  All you need to do is lie back, make yourself comfortable, and, if you really want to, sleep!  Do it at home or anywhere that takes your fancy, either on your own or as a group.  And if you feel like it, dress up for the occasion.  If fundraising, just get people to sponsor you, and for awareness, just let others know you’re taking part.  The same applies if you’re holding your own ‘sleep inspired’ event.

The Big Sleep for ME likes to celebrate ME Awareness month in style, and will be getting in the party mood by running competitions and even having a Facebook disco.  Anyone is welcome to join in the competitions and disco, so keep an eye out for updates on Facebook and Twitter.  You can now also buy all sorts of fab Big Sleep merchandise in their online shop, from tops and sleepwear to their very popular Snugzie bear.  All purchases help to raise even more money for biomedical research as all shop profits are donated. There are also rumours that badges and balloons will be available shortly to make your Big Sleep really go with a swing!  It’s all happening at The Big Sleep for ME.

 It’s great to have such an inclusive event that means everyone, from sufferers to healthy supporters, can unite together to do something positive for ME.  The event is already shaping up nicely and participants have been coming up with lots of fun ways they’ll be taking part, such as a PJ coffee morning and The Princess and ME, a group of ME sufferers who will be dressing as princesses and turning into real-life Sleeping Beauties to coincide with ME Awareness Day.  So, why not join in the fun and do something for ME?  
 
The Big Sleep for ME was set up to fill the need for a completely inclusive ME event that anyone, including those with severe ME, could take part in.  Given the limitations severe ME imposes, a great deal of thought went into what kind of event could take place. In the end, the solution was so obvious.  Since, many with ME have to spend a lot of time lying down either on a sofa or in bed and some sufferers are completely bedbound, why not turn this into something positive and have a mass Sleepathon.  The Big Sleep for ME was born!  Whilst the event now encompasses all manner of ‘sleep inspired’ events and is about having fun, it also has a serious side which is to not only raise much needed awareness and fundraising for biomedical ME research, but also to increase awareness of ME generally.

Find out more about the event on their website.  The event also has its own Facebook page and is on Twitter, you can email them too.  To make things easier, the team has set up a group JustGiving page which you can join and there’s a downloadable Fundraising and Awareness pack and School Leaflet, should you wish to get a school involved, in their online toolkit.  You need to register to take part, but as thank you you’ll be entered into a Free Prize Draw. This helps them to keep track of everyone and plan for future years.

If you can’t take part, but would like to support the event you can always sponsor someone you know, or make a donation to The Big Sleep for ME fundraising group on JustGiving.

With special thanks to Julia Cottam from our ‘Let’s do it for ME’ team for thinking this up this event, and for all the hard work she puts into this inclusive and positive venture, as well as to everyone taking part.

We can all make a difference to ME!
 

The Zzz....Factor

 
For those who are unaware, we are creating a MEEPs version of youtube, based on ME humour, as part of IiME's ME Awareness 2014 activities.

I can now announce that the launch date for the Zzz...Factor is 1st May. The website is already up and running so you can take a preview tour and get an idea of just what's on offer. You won't get to see the "acts" yet, so you'll have to live in anticipation until I activate the JustGiving page.

Zzz...Factor link 

Mhahaha !! Another diabolical scheme to relieve you of your money to help fund IiME medical research and awareness programs. You'll need the password to see the "acts", which you'll only get with your JustGiving donation receipt.

Thank you to all who have contributed to the Zzz...Factor already. I know there are some of you who are working on your own Zzz...Factor entries - no pressure, Linda C and Jeffrey J. :D  The more the merrier - literally. Please keep them coming.

I bet loads of you have funny videos of pets and childrens antics. Send them in (No, not the pets, and DEFINITELY not the children !!!!!) to   IiMEcomedyclub@gmail.com   and we'll put together a "You've been framed" section. May be worth emailing details first, as file size can be a problem.

All together now : Always look on the bright side of life ........

Tony Bradstock

Letters for Louise- March update

Hello again!

I'll briefly talk about what the Letters for Louise project is if you haven't heard of it already, but here are the links to the two previous blog posts for more information, in case I miss something!

September blog post
January update
(I hope they work...!)

Back in September, I was completely at my wits end about the way ME seemed to be shaping my life (I'd just had to give up the job I loved and had worked so hard for), and the worst thing was that there seemed to be so many people I came across who just didn't 'get' ME. We've all come across them I'm sure- those who think ME is glorified tiredness, a way of attracting attention or sympathy, or an excuse to go through life, having fun by doing the bare minimum. I was talking (more like ranting) to a friend one afternoon and said something like 'it's just a shame there isn't anything with loads of ME sufferers saying it how it really is'. And I can remember thinking that maybe I could get something together. Something where there were loads of us sharing our stories, and where we could all say 'it's not just me'. And that's where the Letters for Louise project came from.

Since September, I've been putting together a book where lots of lovely people have been writing letters. Initially the idea was for people to write letters addressed to anyone in their life who has shown them a lack of understanding, disbelief or neglect about ME. But actually, I've had some lovely, really touching letters addressed to people who DO get it. Those very special people who are always there and are just amazing. And actually they have just as much of an impact as the ones to people who haven't been so good... it's been amazing to have both types of letters.

I want to take this opportunity now to thank every single person who has sent me something SOOOOOO much. I'm very humbled by the fact that I now have around 80 letters- that is staggering and something that I never had thought would happen. You are all just the best and if there is one good thing about ME, I think it can really show community spirit at its best and this just proves it. I wish I could personally come and give you all a massive hug (or a big smiley wave if you are touch sensitive!!).

There's still time to get involved! I'm hoping (and am on track) to get the book published for the start of ME Awareness Week. Therefore I am asking for all letters to be with me by Monday 31st March. It was be absolutely wonderful if we could get to 100 letters- this is really shaping up to be a very powerful (and hopefully very helpful) book thanks to all of your fantastic contributions. If you want to be involved, you can choose to have your name included or to remain anonymous. You don't have to write an essay- you can write as much or as little as you want, and you can write as many letters as you want, all addressed to whoever you want. You can either email letters to me at looby_louness@hotmail.co.uk (awful email address I know, but I've had it since I was about 14...!) or you can join the closed Facebook group Letters for Louise! where there's a lovely supportive atmosphere building as people share their letters. This is your chance to get your voice heard!

I turned 25 just over a week ago, and it made me think a lot about my personal journey over the years with ME. At one time I was bed bound for around six months, and I'd never have thought then that any good could come out of having ME. But as I said in my last blog post, the lovely people at IiME and 'Let's Do It for ME!' have inspired me by always being so positive and upbeat and really making the most of the cards they've been dealt... I've met so many brilliant people through this project (and never thought I'd be publishing a book...) All the profits from the book (and lots of virtual hugs) will be going to IiME!

We're so close to getting the book out there now. I've started the whole proof-reading/ organising process (the spell checker constantly tries to change 'myalgic' to 'magical'... if only!) and I've got someone completely fantastic and very talented designing the cover. All it needs now are more of your amazing letters.

I'm so excited about this and can't wait to share it with you! x