Cordon Bleu for ME!

Cordon Bleu for ME

Stuck for ideas? Well, we have plenty!

• You could make a blue drink (perhaps a non-alcoholic cocktail to highlight the tolerance problems of alcohol for someone with ME); 

• or maybe gluten or dairy-free cupcakes with blue icing to represent those who cannot eat normal cupcakes; 

• or perhaps blue pasta by colouring the water (natural food colouring, of course! No nasty E-numbers required). 

• Even a blue soup in the style of the hapless and wonderful Bridget Jones! 

The choice is yours and the choice is HUGE – endless, even! Blue omelette! Blue curry! (Or at least blue rice.) Blue cheese on a pizza! The list goes on and on .... 

The results could be used for an invitation-only themed dinner (might you want to dress as Smurfs for the occasion?); a bake sale; lovely ice lollies (well, we can hope for warm weather in May!) or biscuits around the school playground or office. 

The most important thing is awareness for the horrendous disease that is Myalgic Encephalomyelitis. Remember, many of the severe sufferers cannot eat anything at all and are forced to rely on tube-feeding.

Blue is the colour most associated with ME and eating and even drinking a natural pleasure denied to so many who suffer from it. 

Please help them by doing what you can to highlight what they go through while having fun in the kitchen and remembering how much your efforts, whether Masterchef or total novice, count!

Let the (cake/soufflé/bread) money-raising begin! 

Find Cordon Bleu for ME on Facebook
https://www.facebook.com/CordonBleuForME

https://www.facebook.com/CordonBleuForME

(the photos in this image were obtained through Google and are for illustration and inspirational ideas only)

Let's Do It For ME is an awareness and fundraising campaign in support of Invest in ME Charity.  We are aiming to reach £1m for Invest in ME Research Funds in 2015 - please click here for March 2015 press release and details - http://bitly.com/1zZWp4l

THANK YOU FOR YOUR SUPPORT!

Mamma Mia! - Bear's West End Debut

Our fluffy campaign mascot the Let's do it for ME! Bear first met young starlet Jessica Daley during her time in BBC talent show 'Over the Rainbow'.  They became firm friends and Jessica now helps him in his quest to raise awareness of ME whenever she can.  Bear was delighted to visit Jessica in London again recently.  Their mission: to raise awareness of ME once again!

Bear didn't know it but he was in for a real treat.. since his last visit Jessica has successfully graduated from Arts Ed and secured her first West End role.  She's now starring in the award winning musical Mamma Mia! as Ali.  It was a first for Bear to experience the extravaganza of a West End musical and with such a hit-filled uplifting show he hasn't stopped singing and toe tapping since.  While Bear is no old pro (as yet) at attending showbiz events or rubbing shoulders with celebs he managed to keep his cool when introduced backstage to leading ladies Steph Parry, Dianne Pilkington and Jane Milligan (left to right) in their fabulous flared neon catsuits.  Bear received a very warm welcome and a Mamma Mia! selfie to add to his awareness raising photo album - thank you ladies!

Bear meets some of the show's main characters fresh from the stage: Tanya (Steph Parry), Donna Sheridan (Dianne Pilkington) and Rosie (Jane Milligan)

Some 250,000 people are thought to have ME or CFS in the UK – 25% are severely affected and 10% are children. Some are so severely affected that they cannot move, speak or swallow. Find out more about ME and our campaign here.


Who could Bear meet next? Do you think you can get our cuddly, handsome mascot LDIfME Bear an introduction to a local celeb to help raise awareness of our fundraising campaign and the vital work of Invest in ME? Our awareness raising bears remain available for adoption to all good homes from our shop but we are now able to offer a limited number direct from Invest in ME at a reduced price while stocks last. These will be added to the IiME site soon and we will update this post, www.investinme.org and ldifme.org


Also see: Bear meets Emmerdale star Claire King and some of Andrew Lloyd Webber's favourite Dorothy finalists here. Bear was lucky enough to meet some of the lovely writers, directors and actors involved in making 'Many Happy Returns' a Dr Who audio play sold in aid of Invest in ME here.

Let's do it for ME!

ldifme.org

Invest in ME (Research)

investinme.org

IiME International Biomedical Research Conference

investinme.eu

IiME/UCL UK Rituximab Trial 

ukrituximabtrial.org

Let's get in gear for ME Awareness!

May kicks off a game changing season, with people refreshing their wardrobe for a fresh and summery look.  May is also the month for ME Awareness and Invest in ME is organising and funding game-changing biomedical research into myalgic encephalomyelitis .... so what are we waiting for?
Let´s get shopping for ME!

The seller proceeds from our online Spreadshirt shops go direct to Invest in ME and are run by members of Team Let's do it ME!

Let's do it for ME! 

http://ldifme.spreadshirt.co.uk/

M.E Awareness (and fibromyalgia designs) 

http://653855.spreadshirt.co.uk/

The Big Sleep for ME 

http://thebigsleepforme.spreadshirt.co.uk/

Make MECrafts 

http://www.makemecrafts.com/Make-ME-Spreadshirt.html

*****

Other online shops run by the team with seller proceeds to Invest in ME.

Carmel's M.E Awareness on Cafepress 

http://www.cafepress.com/meawareness

Mama Chill's dizzyjam - all profit from "Runnin' On Empty" and "One Stupid Dot" ranges to Invest in ME. 

http://wwwmamachill.dizzyjam.com

Other options to Shop for Biomedical ME Research 

http://ldifme.org/shop/

Other Items for ME Awareness 

http://ldifme.org/awareness-materials/

If you shop on Amazon, please use this link to generate a percentage to Invest in ME 

at no extra cost to you or the buyer. 

http://www.amazon.co.uk/?_encoding=UTF8&camp=1634&creative=6738&linkCode=ur2&tag=ininme-21

Other Ways to Raise Funds for FREE while you shop or search online. 

http://ldifme.org/raise-funds-for-free/

Let's go shopping for ME Awareness - Let's do it for ME!

Thank you for your support!

Links to May 2014 Awareness Events by Invest in ME and their supporters.

http://blog.ldifme.org/2014/05/me-awareness-may-2014.html

*Let's do it for ME! is a campaign to help raise awareness of the work of independent UK charity Invest in ME (Research) 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 encephalomyelitis in UK in collaboration with international researchers of world renown - 2014 will be an exciting year for progress in M.E. research - you can help*

Let's do it for ME!

ldifme.org

Invest in ME (Research)

investinme.org

Invest in ME International Biomedical Research Conference (IIMEC)

investinme.eu

IiME/UCL/UK rituximab trial 

ukrituximabtrial.org

Competitions Galore!!

It’s May, it’s ME Awareness month and it’s time to celebrate! The Big Sleep for ME, a fundraising and awareness event in aid of Invest in ME, are getting in the party mood. They’ve lined up a whole load of fab competitions which you can take part in throughout the month. There are some great prizes to be won, including their very popular Snugzie bear, a signed copy of Ros Lemarchand’s book of poems, ‘My A – Z of ME Myalgic Encephalomyelitis’, and a chance to have your own artwork feature on their merchandise. They even have a competition especially for children.

Their prize draw to win a bear is very easy to enter. All you have to do is simply register to take part here and you’ll be automatically put into the draw. You must register by 10th May to qualify. The draw will take place on 11th and the winner will be announced to tie in with the first day of ME Awareness Week and their Sleepathon. If you’re taking part in the event, you can also get your hands on one of their bears by just submitting photos to them of you taking part. They will award bears to those they consider have sent the best in. 

The Where’s Bear? Competition looks great fun! Snugzie will be off travelling from 11 – 17 May, to coincide with ME Awareness Week and the Sleepathon, all you have to do is say where he is. There’s a bear up for grabs each day, so there are plenty of opportunities to get your mitts on one!  This is how it works; each day a picture will be posted up of Snugzie on ‘location’ on their website homepage, Facebook Event’s page and tweeted via Twitter. You then submit your answer of where you think he is by email, commenting under the picture on Facebook or replying to the tweet on Twitter. All the correct answers will be put into a draw and the winner will be announced the next day. We understand from inside information that he certainly gets around! There’s no stopping that adventurous little bear!

With the next two competitions, it’s time to get creative. First up, for those budding poets out there, is the Poetry Competition. This competition is inspired by the popularity of Ros Lemarchand’s poems posted during last year’s Big Sleep. Not only does the winner get a signed copy of Ros’s book of poems, ‘My A – Z of ME’, but it’s also a chance to shine because the winning poem will be shared on Facebook, tweeted and have its own dedicated blog post. Big Sleep HQ has said that if there are a number of very good entries the number of winners will be extended. It has even been mooted; they might put together a book of the best ones. Your poem could be in print! How amazing is that?!

The competition is open to anyone, but the poems must relate to ME. Just email your poems to info@thebigsleepforme.com, post them up on their Facebook Event page or even tweet them to The Big Sleep for ME. Each entrant is allowed to submit up to 3 poems and the deadline for entry is 31st May, the winner(s) will be announced on 28th June.

The T shirt Design Competition is equally exciting. For those with an artistic bent, just submit a design/s to feature on their T shirts and other merchandise. The design brief is pretty wide; it just needs to relate either to the event, ME or both. Be as inventive and creative as you like! The winning design will not only feature on their merchandise in their shops, but the winner will get to wear it as well! Since The Big Sleep is giving away an item of clothing of the winner’s choosing with their design on. How fab is that?

The artwork must be your own , be submitted in digital format and emailed to them. For drawings and paintings just scan and send them, if you’re more into graphics and editing that’s fine. But again, it must be your own work: any elements contained which are not your own must not be subject to copyright. You are allowed to submit up to 3 designs in the following formats; JPEG, PNG, GIF, TIFF, PDF, AI, EPS. The image must be good quality and be at least 300dpi. Large files need to be zipped so they can receive them. The entry deadline is 31st May and the winner will be announced on 28th June. 

The Big Sleep for ME likes to be as inclusive as possible, so they’ve also got a competition especially for children. The Bear Detective Competition is a fun way for children to engage with ME. All they have to do is help Big Sleep HQ find the suspicious Big Sleep Bear by letting them know where he is and what disguise he’s wearing. He’s hiding somewhere on their website. Answers can be submitted here. Only children 11 and under can enter, with only one entry allowed per child. All children must have parental consent to enter. Deadline for entry is 16th May. All correct answers will be put into a draw and the winner will be announced on 17th, which ties in with the end of ME Awareness Week and the Sleepathon.

But that’s not it! They’re also having a Facebook disco which will be announced shortly and Ros, The Big Sleep Bard, is back for 2014 with more of her great poems. It’s all happening at The Big Sleep for ME!  

If you want to find out more about the competitions or are interested in taking part go to their website. You can email or tweet them too.

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