24 December 2014

Christmas Greetings from ME to You!

Thank you for your on-going support throughout 2014!

This campaign is only a success because of you as you're the ones really "Doing It for ME!"

Wishing everyone a very Merry Christmas and of course, as always, thinking of all those isolated at this time of year. Many of our group have severe ME so our thoughts are truly with you.

Looking forward to more fun fundraising with you all in 2015! 

We also wish all at Invest in ME charity a well-deserved Happy Christmas and all the best for the year ahead - our campaign exists in support of their amazing work!

Extracts from Invest in ME Christmas 2014 newsletter ....

Invest in ME and our supporters have a firm belief that the only sensible strategy for finding useful treatments, prevention and ultimately a cure for ME is via a focus on biomedical research into the illness. Our efforts since 2007 have concentrated on international collaboration in biomedical research - something that has already been proven to be productive.

In 2013 we had announced the beginning of our plans to initiate a clinical trial of rituximab following the BRMEC3 Colloquium and our magnificent supporters have achieved the impossible in 2014 and raised the initial target of £350,000. A preliminary B-cell study was made part of this project and that was started during this last year.

Our foundation project at UEA/IFR continued and we have complemented this with funding of medical students who are participating in our projects by intercalating during their fourth year of study.

Our intention was announced in 2014 to fund more PhD studentships and our targets have been set.
The charity set up an Advisory Board of researchers to help with strategy and focus research efforts. This has met twice in 2014. With the planned four PhDs and three medical students working on biomedical research into ME a good foundation for our future aims has been built.

With all the hardships that ME causes to patients and families they still believe there is a better way and 2014 was a year when patient power really came to the fore – led by IIME supporters. Despite having been set challenging targets to initiate a strategy of biomedical research, our supporters have given hope to all patients.

Thank you all.

Our thanks to the LDIFME team for the enormous work they have performed and the service to the ME community which they have achieved through their tireless efforts to raise awareness and funds via positive and innovative campaigns.

Despite enormous difficulties we have, together, made things happen.

As we approach Christmas we can look to the next year and express hope. We have our tenth International ME conference and our fifth Biomedical Research into ME Colloquium - which will now span two days.

We would like to wish all of our wonderful supporters a very happy Christmas and a New Year full of hope - and a huge thank you for all that you have to done to help us all to move forward.
You continue to make a difference.

Merry Christmas!

From all at Invest in ME

*end of extracts* - past IIME newsletters here -http://www.investinme.org/IIME%20newsletter.htm

The IIME gut microbiota research is being conducted at the world-class Institute of Food Research (IFR) and is featured in Day 7 of the brilliant Advent Calendar IFR have produced for 2014. Well worth a browse through these bite-size snippets of fun and facts - http://blogs.ifr.ac.uk/advent/category/advent/

Best Wishes to Everyone for Christmas and New Year!
Thank you for your support!

Let's do it for ME 
in support of 
Invest in ME 

4 December 2014

Festive Treasures Fundraising for M.E Research

Alison Orr

Alison has a beautiful selection of festive candles and jewellery for sale over on our Make ME Crafts website.

Her Christmas candles are proving popular, find out what's currently for sale from the range here http://www.makemecrafts.com/seller_page.php?sellerid=256

100 Birdies for ME

This Scandi-inspired hanging owl is just one of many designs by 100 Birdies for ME, which continues to raise funds for Invest in ME long after hitting its initial target of 100 sales.  The range now includes Spoonie jewellery too.

Visit the Etsy shop here https://www.etsy.com/uk/shop/100Birdies4ME

Christmas Cards

This year's successful entries to our competition, as well as some from previous years - including Julie-Ann's Candle House design, voted Best Charity Christmas Card of 2013 by The Independent IndieBest.

Our various designs are available in both single and multi-design packs and at a competitive price. You can also see the back of the cards which raise awareness of the charity - all on IiME's dedicated webpage here http://www.investinme.org/Christmas%202014.htm

Decadent Dragonfly

This year Jenny's Treasures for ME transformed into Decadent Dragonfly.

Jenny sells some stunning jewellery, hair accessories and custom pieces all through her Facebook page.

Due to a necessary name change her Facebook page is new, so if you love her stuff (like we do), please also 'like it' and share if you can https://www.facebook.com/DecadentDragonfly

Foggy Creations

These festive napkin rings with charms are by Foggy Creations and can be found on our Make ME Crafts website alongside other Christmas decorations, and some equally decorative jewellery and bookmarks - all a perfect size to fit in someone's stocking.

See what's currently available from Foggy Creations on our website here http://www.makemecrafts.com/seller_page.php?sellerid=198

From ME to You, With Love

The book From ME to You, With Love was put together following the Letters for Louise project we first shared on our blog in October last year - blogpost.

Louise's call for letters from people with ME caught many people's imagination.  She received so many raw and honest letters of love, anger, and pain to create an inspiring book.  Reduced by 25% in the run up to Christmas with all profits going to Invest in ME.  Find out more and purchase the book via the website http://www.frommetoyouwithlove.co.uk/

Let's Do It for ME store

Our Spreadshirt store has gone festive again with the return of Santa and our ever so cuddly Christmas Moose.  Visit our standard store http://ldifme.spreadshirt.co.uk/  Or get creative with our designer store http://designerme.spreadshirt.co.uk/

One of a kind crafts

As well as these unique Christmas decorations, jewellery, gift boxes, bag charms and felt purses are all available from this charitable seller on the One of a kind crafts Facebook page, which has picked up some lovely reviews from happy customers.

One of a kind crafts also plans to attend the South Moulton Festive Fayre this Friday, do stop by if you're in the area http://www.visitsouthmolton.co.uk/portfolioentry/4803/

Runnin On Empty

A limited edition 'Jingle for ME' design is no longer available, but you can see the other designs in the Runnin On Empty shop run by Stacy aka Mama chill - http://runninonempty.dizzyjam.com


Introducing Seren-e-dipity - a range of jewellery, charms and bookmarks that includes various festive treats like these stylish seasonal Snowpeople.

Take a look to be among the first to follow and share this new page with your friends and family https://www.facebook.com/pages/Seren-e-dipity/407154525994073

Serendipity: The art of making happy discoveries.

Sue's Scarves for ME

We've come to look forward to Sue's scarves each winter and this year is no exception.  To make those pennies stretch Sue is having a pre-Christmas sale, see the sale album on her Facebook page here - Sale 2014 Album

Of course as well as keeping you warm this winter, like all items highlighted in this blog, a scarf from Sue raises funds for vital biomedical research into ME.

Discover more items for sale in support of UK charity Invest in ME (Research) over on our website here http://ldifme.org/shop/

Selling something festive with proceeds to Invest in ME?  If you'd like to be included in an updated version of this post contact us by email here.  (post updated 4th Dec.)

Also see various ways to raise funds for Invest in ME when shopping online - http://ldifme.org/raise-funds-for-free/

Happy Seasonal Shopping for Invest in ME!

Let's do it for ME!
in support of
Invest in ME (Research) Charity

22 November 2014

The Caged Bird
 21st November 2014:

Twenty Years On ...

Hello, everyone! I’m afraid I’m too poorly to write (type) much at the moment, but my second video (you HAVE seen the first, I trust? ;) ) says it all ...

Twenty Years On from contracting ME; in my case, either caused by or triggered by the MMR jab on the 21st November 1994, when I was just eleven years old. (This is being published on the 22nd November, owing to a few *slight* technicalities and a LOT of megabyte file-size errors ... don't ask ...)

The Caged Bird: ME Awareness: 
Twenty Years On ...

Suffice it to say, I don’t intend to endure another twenty years of being this poorly or worse; this is why it is imperative that people join forces to support this amazing charity, Invest in ME, in making advancements in the diagnosis, testing, treatment and eventual cure for this horrendous disease.

This is my JustGiving page, set up for my first video back in May:


And said first video:

The Caged Bird: ME Awareness: 
A Dream, A Wish, A Hope ...

 Please watch my videos, share widely and donate if you can. My target was originally £100 and is still going strong; £5000 would be even better! *hint-hint*

From the bottom of my heart and soul, thank you.

All my love, 
The Caged Bird.

The Caged Bird

3 November 2014

New book proposal - 100% profits to Invest In ME

Hello guys, Hay Green here writing from my bed. I published a book called 101 Tips For Coping With M.E which has now sold around 600 copies with 25% of all royalties to the charity.

I had a great idea for a brain fog book but didn't get many responses and having had a think, I have a new idea which I would love you all to hear about.

We all have one thing in common - we have M.E. But we all have different stories, we all became ill at different ages, some of us made improvements, some of us got worse, and we all have a story to tell.

What I think would be lovely is a book where we can all tell our own stories, based around
- when you first got ill
- when you were diagnosed
- how you were treated by the medical profession, family and friends
- your current situation
- how you cope
- and finally what the hardest thing about the illness is

I am thinking a couple of pages for each story in an a5 book, as long as it is short and sweet and to the point so we can all share our experiences.

If people are up for this I will donate 100% of all royalties to Invest In ME

Any questions or stories, email me on hayley101tips@yahoo.co.uk

Thanks guys, sorry for the short post but struggling today! Love and hugs as always :-) x

Hayley xxx

24 October 2014

Let's Scare to Care at Halloween! Photo Competition, Scary Bear Party and more ..

Let's be devils and help Invest in ME reach their fundraising ghouls this Halloween!

Enter Giveacar's Halloween Photo Competition and win some fantastic prizes 
as well as great donations for our favourite charity - Invest in ME!

Giveacar are looking for creative, imaginative photographs of your Halloween festivities - pumpkin carvings, spooky costumes, terrifying decorations or maybe something even more unique!


1st Prize: An Amazon Kindle and £200 donation to charity
2nd Prize: A 6 month Netflix subscription and £100 donation to charity
3rd Prize: A £20 Amazon voucher and £50 donation to charity

The competition will run from Friday 24th October to Tuesday 4th November at midnight.

To enter: You can enter the competition in a number of ways:

Facebook: Go to the Giveacar Facebook page, like the page and upload your photograph to the timeline. Make sure you mention Invest in ME charity in the text! (your picture won't appear on the timeline straight away but Giveacar will have received it).

Twitter: Tweet your photograph, making sure that you include @Giveacar so that they can see it and mention the name of Invest in ME charity (@Invest_in_ME) Follow @Giveacar to be notified of the results.

Email: You can also email your entries to charity@giveacar.co.uk making sure that you attach the photograph and mention Invest in ME charity.

For more information visit www.giveacar.co.uk/halloween-competition

Giveacar will release the results on Friday 7th November - GOOD LUCK!

More fiendish ways to raise funds or have just have fun and lift some spirits .. 

Well enough for a Halloween party, or know someone who is? 
Why not ask them to scare to care and donate £5 to Invest in ME?  

Not well enough to party, but want to raise some spirits? 
You are warmly invited to join Scary Bear for M.E. Halloween online on Facebook!  

See you there, if you dare .... mwahahah! 

Need some fiendishly fine jewellery to adorn your party scary wear?

Want to shed a little light on the night?

Alison Orr's gorgeous candles - organic unscented option available!

Roger's Fright Hike for Invest In ME!
Batastic! Roger Ogborne's story: "On 31st October I will be taking part in the Fright Hike; A 20 mile hike through Epping Forest in Essex in the dark! I will be starting at Midnight on Halloween and I am doing it to raise money for Invest in ME as my daughter was diagnosed at 15 with this illness. Invest in ME is a charity that seeks to raise money to fund biomedical research in regards to ME." 
See Roger's Everyclick fundraising page.

THANKS to all joining in with the spirit of our campaign to raise awareness 
and lots of funds for Invest in ME - Happy Halloween everyone!

Thank you for your support! 

*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 encephomyelitis in UK in collaboration with international researchers of world renown - 2014 is an exciting year for progress in M.E. research - you can help*

in support of

1 October 2014

Stoptober for ME!

Stoptober is a Department of Health campaign that challenges smokers to give up cigarettes for 28 days during the month of October. But why stop there? Will you or your friends or family members give up something in October and donate the money to Invest in ME? 

This is the idea behind Stoptober Stop for ME! An event created by Ali Head. 

October has become the month of abstinence, so how about inviting your family and friends to give up something they love and will miss for a month and donating what they would have spent to Invest in ME? 

The sentiment behind this is people with ME have to go without so many things they love; drinking, fags, going out, eating what you like, shopping, cinema, clubbing even holidays, their choices are so limited by this illness so during the month of October why not give up something you love and raise money for biomedical research into myalgic encephalomyelitis (ME) at the same time?

What to do? 

Mark yourself as attending, and invite your family and friends to join in to support you.

Choose what you're giving up.

Tell us what you're giving up, how much of it you usually have, and what it costs!

At the end of Stoptober you can donate what you've saved to;

Or you can text as you go along by texting "POTS66" and the amount you wish to donate.

We say "thank you very much for supporting the local charity Invest in ME who are the worlds leading voluntary organisation for research and support of people with M.E"

Stoptober for ME event on Facebook

Let's do it for ME!

In support of the proposal by Invest in ME (Research) Charity to establish (now develop) a UK centre of excellence for biomedical research and treatment of myalgic encephalomyelitis. http://www.investinme.org/

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