29 September 2014

Welcome to IIME September Newsletter!

We said in our 1st September update that August had been a busy for month for Invest in ME Charity  
and their supporters. Well, this month has followed suit! 

Invest in ME Research Charity
This rapid progress is enabled *THANKS to YOU ALL* for your tremendous support and generous donations to Invest in ME. IIME writes:
"There are real grounds for optimism now that the charity and its supporters have been able to build a foundation for a long term strategy of biomedical research into ME."
The jam-packed pdf version of the Invest in ME September 2014 Newsletter is a round-up of the two e-newsletters published by the charity this month.

This new pdf format is a taster of things to come, as they intend in future to produce a fuller magazine to accompany the newsletter. This will transform into a monthly document which describes the work that the charity and their supporters are doing together.

From the Introduction:

September 2014 IIME Newsletter
Our foundation project has begun at University of East Anglia and the Institute of Food Research to analyse gut microbiota in ME patients.

At the 2012 conference we stated that we were working on an attempt to set up a rituximab clinical trial. Following our Biomedical Research into ME Colloquium in London last year we have made rapid progress by partnering UCL in setting up the planned UK rituximab clinical trial.

In our ninth year as an organisation we can say each year has been a stepping stone in breaking the mould and bringing ME into mainstream in research and media.

Funding is scarce and the efforts of our supporters to make up what has been lacking from government agencies and research funding organisations have been awe-inspiring.

Please have a read and let us know what you think of the new format! 

You can also -

Click here for the web version of the 1st September 2014 IIME Newsletter.

Click here for the web version of the 22nd September 2014 IIME Newsletter.

Coming up in October ...
  • 1st of the month - the day to donate just £1 to Ist Class Biomedical ME Research!
  • Stoptober Stop for M.E!
  • Scary Bear Halloween Event! 
Invest in ME Research Charity

Thank you for you support!

Let's do it for ME!
created in support of 
Invest in ME Charity

19 September 2014

Let’s Get Snapping for M.E! 2014 Christmas Cards Competition Winners Announced!

The Let’s do it for ME team came up with the idea of the Let’s Get Snapping for M.E! Competition back in 2012 when we were discussing plans to sell Christmas cards for the very first time. We wanted to go that extra mile and do something a little bit special and more relevant to ME than simply buying in stock images. In the end, we decided that it would be a really good idea to run this competition whereby those, particularly within the ME community, could make a contribution by sending in photos or artwork and have winning entries printed on our cards. We realised that this would be a great opportunity for ME sufferers in particular, whose talent often remains behind closed doors, to have the chance to be acknowledged and celebrated. There couldn’t be a more powerful and positive way to increase ME awareness whilst raising vital funds towards biomedical research into the disease.

Now in its third year, the competition is still going strong and the response, as always, has been simply amazing, with 161 images entered and a staggering 3482 votes cast in our online poll, we couldn’t have asked or wished for more. The great success of the Let’s Get Snapping for M.E. simply wouldn’t have been possible without your support and we would like to say a very big thank to everyone who got involved.

The standard of entries was particularly high again this year and this made Invest in ME’s task of judging the final stage particularly difficult. In the end sixteen winning images were chosen. Yes, you’ve read that right - sixteen! We like to keep you on your toes. Fourteen of the images will be printed as cards and two have been selected to be printed as the back cover of the cards.

Each winner, to remind those that haven’t read our earlier posts, will have their images printed up on our 2014 Christmas cards and receive either a mixed pack or one solely of their own. The cards will be sold in aid of Invest in ME’s biomedical research fund. We aim to have these available to purchase by the end of this month through the charity’s website.

We hope our competition inspires you in the coming months to dust off your cameras and paint brushes ready for next year’s competition. And with the continuing success of this competition it will definitely be a regular feature in our calendar and hopefully yours too! Here’s to an even bigger and better Let’s Get Snapping for M.E! in 2015. Let’s do it for ME!

So without further ado, as this the moment you’ve all been waiting for, Let’s do it for ME can proudly announce the sixteen winning images of Let’s Snapping for M.E! 2014 Competition.

Congratulations and well done!


The two winning images below have been selected to be printed as the back cover of this year's cards.

18 September 2014

Hurst Family Fundraising for ME!

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.

2013 Picture Quiz
Back in 2000 I felt I just had to do something to help raise both awareness of this illness and funds for ME research. I decided I would organise a trivia quiz. It took months to compile but eventually it was complete and, thankfully, it raised over £400 for ME Research. I went on to do another 7 more quizzes and 2 years ago Geoff came on board and our 2 quizzes have raised a total of £2100 for Invest In ME. Lets Do It For ME helped us to reach this total as did our families, and of course our friends who were so generous with donations. We hope to organise another quiz later this year. Geoff’s a great quiz partner (don’t tell him I said that though!)

Profits to Invest in ME and The 25% M.E. Group
Back in 2004 I put together some Nature photocards to raise money for various ME Charities. All photos I use for the the cards are taken by either people with ME or the families of PWME. We got 20 packs of each design printed up and thankfully they sold! And incredibly they still do sell! Profits from the photocards go to Invest In ME and The 25% M.E. Group. Alongside the photocards I’ve been making my own greeting cards since 2005. Due to the illness I can usually manage two 20 minute card-making sessions a day and even during these better hours it’s often frustratingly difficult to concentrate due to the pain and vertigo I experience, this is one of the reasons I keep my designs pretty simple, plus I’m not talented enough to create anything too complex! 

Range of Designs
Supermarket Display

My family have been brilliant and organise sales three times a year at our local supermarkets and our local Farm Shop sell my Easter and Christmas cards. We all just want to do our bit to help raise awareness and funds for this horrible horrible illness that unfortunately can and does destroy lives. Over the past 13 years the cards and the quizzes have raised over £11,000 (£2000 of this was raised by the online quizzes Geoff Allen and I organised). Hopefully the cards will continue selling and hopefully Geoff and I can think of some more quiz questions so we can launch a 2014 Trivia/Picture Quiz later this year! Thanks for reading :-) Jane Hurst.

Hurst Family Sales of Jane's Cards
A big THANK YOU to Jane Hurst and family for their tremendous efforts and achievements in raising awareness and vital funds for biomedical research into myalgic encephalomyelitis, and not forgetting quiz-partner and fellow Let's do it for ME Team member Geoff Allen. Together, they embody the true spirit of our can-do community campaign 
in support of the progressive work of 
Invest in ME Research charity in developing a UK centre of excellence for ME.  

Jane has two sets of photocards now with new designs. Click below for details.

Pack 1         Pack 2 

Cards for all seasons to Invest in ME all year round!

8 September 2014

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

On Saturday the 6th September I swam the length of Coniston Water, all 5.25 miles of it, for Invest in M.E.
I’m what you would call a ‘wellie’ but I have friends with M.E.  Over the past year, my eyes have been opened to what a debilitating illness it is. I read stories of individual challenges to raise funds, such as one persons walk to the garden gate. This inspired me greatly. When I set my swimming challenge, I decided that if courageous people with M.E could challenge themselves to raise funds, I could swim the length of the lake for them.  I’m not a particularly sporty person. By trade I’m a photographer  at Sarah Loveland Photography and this is only my 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!

So last Saturday at 0835, I found myself at one end of Coniston, ready to start the swim. It was a big organised event with 500 people swimming.  There were safety kayaks and support boats in the water.  I was both nervous and excited.  At the start, the water was so calm, it looked like glass.  On the swim route there were a number of feed station boats that had water and various energy drinks, gels and jelly babies on board. The first one was at 1.5 miles and then they were at one mile intervals. I told myself that all I needed to do was swim from one boat to the next, and not think of it as one huge swim.

During the swim I thought about all the lovely messages of support I had received on my Just Giving page and in all the M.E Facebook groups. I have been blown away by all the support and encouragement. This made such a difference when I was in the water. 

I’m proud to say that I completed the swim in 4 hours and 19 minutes.  I felt a bit stunned when I got out of the water. I couldn't believe I had actually done it! It was a beautiful place to swim and an amazing thing to have done. Many people have shown their support and sponsored me. I am so grateful for this.  If you would like to sponsor me,  you still can. Sponsor me here!

I’m already thinking and planning an even bigger swim for Invest in M.E next year. I’m not going to tell you what it is just yet, not until the date has been confirmed. Once again, I would like to say a massive thank you to everyone that has supported and sponsored me, I have appreciated it so much. It has made the world of difference.

 Thank you!

Sarah x
p.s. from the team at Let's do it for for ME! We would like say huge thanks to Sarah for her incredible efforts to raise awareness of myalgic encephalomyelitis and funds for Invest in ME charity, and how excited are we to hear that she is planning her next challenge for this amazing charity?!

THANK YOU Sarah and sponsors and everyone for your support!

Sponsor Sarah's Chill Swim on JustGiving

See Sarah's award winning photography and more at sarahloveland.com

1 September 2014

Let’s Get Snapping for ME 2014 Competition Online Vote

There’s always a great sense of excitement in the air when our Online Vote goes live
because everyone is eager to see the entries. However, this year it’s even more so since not
only are everyone’s images going in for the first time but most of the Let’s do it for ME Team
haven’t even seen any of them. With over 150 images and the high standard of entries
everyone is certainly going to be spoilt for choice. We’re also really glad we expanded our
competition to accept artwork this year as there are obviously some very talented people
out there. But before we tell you how to vote, we’d like to say a very big thank you to everyone
who has entered and to all those taking part. We couldn’t do it without you!

To vote, simply go to our Voting Gallery and click ‘Vote’ on your favourite image(s). You can
vote for as many images as you like but you can only vote once per image per IP address.
Facebook users can vote on our Competition App Page and those not on Facebook can vote
via our Competition webpage. Since there are so many entries make sure you click on ‘View
More’ at the bottom of Gallery to see them all. Alternatively, you can click on the first
image and scroll between them using the arrows directly beneath the image. This option also allows
you to see the images in full as the Voting page only initially displays image thumbnails.
Remember the vote closes at midnight 7 September.

Invest in ME will then judge the final stage and choose the winners whose images will be
printed on this year’s Christmas cards. We aim to print ten cards and will announce the
winners on 19 September
, both on our blog and Facebook Competition Event’s Page. We
hope to have the cards ready for sale by late September through Invest in ME’s website. All
the cards are sold in aid of Invest in ME’s Biomedical Research Fund so any purchases made
will not only help advance ME research but also raise much needed awareness of the
Have fun and good luck to all our entrants!

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

It's September already?!? Where did that go?

It hardly seems a year ago now that I started the 'Letters for Louise' project. Never in a million years did I imagine that the whole thing would be so successful or that I'd meet so many amazing people.

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 that I have been able to donate to Invest in ME is now over £150 and once I've donated royalties from the last couple of months and cash sales, we're looking at around £300 so far. A massive thank you to everyone who has bought the book, either in paperback or for the Kindle.

Awareness and feedback of the book has gone from strength to strength, and I'm now delighted to be able to tell you about the launch of the book's official website - www.frommetoyouwithlove.co.uk. The website was created to give more information about the book, my story and how the book was created, as well as letting people know about Invest in ME and Let's do it for ME! And, most importantly, there are links to buy the book all using easyfundraising to raise more funds for Invest in ME.

I've also been really lucky to have the book featured in the local media, both in my hometown of Taunton and Northampton, where I now live. The purpose of this hasn't just been to promote the book, but also raise awareness of ME in general and talk about the great things that Invest in ME are doing for ME sufferers. It's been a little bit surreal but all very exciting - you can listen and see everything that has been happening on the new website.

If you haven't heard of the book before or the 'Letters for Louise' project, let me introduce you to what it's all about. Going back to 2013, I was talking to a friend about how sometimes it can be worse battling people's attitudes towards ME and the disbelief we are all too familiar with than the actual symptoms themselves. I said to her that if only there was something out there that had loads of people's experiences together - the views of sufferers themselves rather than doctors - it would be brilliant to give to people who might not understand. I then had the idea of putting together a collection of letters written by ME sufferers, to produce a resource that could be given to anyone who needed a bit of 'help', shall we say, in understanding what we go through. From that, I had the idea of turning this into a proper, published book (which seemed like a crazy idea at the time as I had no idea how to go about it!) with all the profits going to Invest in ME. That's when the 'Letters for Louise' project began.

Everyone who contributed sent something incredibly heartfelt, honest, and above all, unique. It was an amazing thing to be part of and I will always be very grateful to my new friends for their honesty and bravery in helping me make the book happen. Since the book was published in May, I've had nothing but extremely positive feedback and I think the success of it all is credit to all of the amazing people who took the time and effort to write a letter - especially considering that some of them are extremely ill.

I've got lots planned for where I'm going to take the book next. Andrea Leadsom, MP for South Northamptonshire, has raised the issue with Jeremy Hunt and hopefully, that might prompt some action in the health sector. I'm hoping that the book can continue to be used as a tool for doctors, nurses and other health professionals to realise that this is an illness that needs to be taken seriously - and I hope that at least some of them will treat their patients with more respect and dignity as a result. I'm also trying to think of ways to get a few well known names behind the book, so that they can help raise more awareness and more money for Invest in ME. I think it's a case of watch this space!

But for now, thanks for reading - and I hope you find the website useful!

Louise x