ME Awareness - Makayla & Mummy

Makayla and Mummy

Michelle Nunn wrote:

At the age of just 8 being told you have ME must be awful, you're told how you have to change your life, schooling etc. etc, it's bad enough that you're not well enough to play with your friends this is not what childhood is about!!!. But yet this brave amazing little girl has never complained or given up hope. Three and a half years later she's still holding on to this hope that one day. So to make that one day real for her and so many others she's set about raising money for IiME Charity by taking part in a sponsored horse walk. Please sponsor this brave little girl in her challenge even if its a £1 its £1 close to that hope for her and so many.  Thank you a very proud Mummy. 

Having a child with this illness is nearly as isolating as a adult with this illness.  You lose so many friends as they just don't get it, yet the support we have been shown by everyone re her sponsored walk has been amazing. Seeing her face when I tell her someone we don't know has sponsored her is priceless.  She smashed her £150 target and now she wants to get to the £1000 - please help her no matter how small it still brings a massive smile to her face.  Thank you all.

Makayla Nunn

Makayla's story:

At the young age of 8, I was diagnosed with the debilitating illness ME.

This illness had changed so much of my young life, turning my world upside down. Yet I have never given up HOPE.

I would like to join others in a sponsored horse walk on the 10th May 2015.

I suffer with exhaustion and pain so this is not going to be easy for me but I wouldn't have it any other way. Please show me your support and give me HOPE that I can do this.

Text WFME55 £1 (or £2-£5/£10) to 70070
or donate to
Makayla's Horse Walk on JustGiving
https://www.justgiving.com/michelle-nunn1/

UPDATE:  Congratulations to Makayla and big THANKS to her kind sponsors on reaching the new target this plucky little girl had set herself of £1000!  Michelle wrote: "Thank you all so much for once ME has given my little girl something to smile at and for her to say take that ME with all your kind help she has raised over £1000 (without gift aid) one very happy little girl and a proud mum. THANK U ALL."

Makayla's fundraising page remains open and her Horse Walk is planned for 10th May.

Created by Michelle Nunn

Meanwhile, if you would like one of these delightful teddy bear pictures (left) with your name on it to show your support for ME Awareness, then just let us or Michelle know when you donate to Makayla's Horse Walk and she will send it to your inbox.  You can comment on this blog or contact Michelle directly via this post in Invest in ME Facebook - http://on.fb.me/1FWmF5G

THANK YOU FOR YOUR SUPPORT!

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

Charity Today News!

Charity Today

UPDATE 16th March:  You did it! Invest in ME got the most nominations and won!  More news on this when we have it. Meanwhile, well done and big THANKS everyone for nominating Invest in ME. 

Posted on 10th March:
Great chance to win a month’s free advertising on Charity Today News for Invest in ME Charity. The charity with the most nominations wins, it’s that simple.
How to enter:
Simply like and share the post, then name Invest in ME below to nominate them.
Closes 11am on 13th March 2015.

The post is currently pinned to the Charity Today page on Facebook -https://www.facebook.com/charitytodaynews

THANKS FOR YOUR SUPPORT!

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

ALL4LOVE!

ME AWARENESS - LET'S BE SEEN IN 2015! 

All seller proceeds from our online shops go straight to Invest in ME charity 

for biomedical research into myalgic encephalomyelitis. 

Free delivery for all orders on Spreadshirt over £30

From 29 January until 2 February 2015

Coupon Code: ALL4LOVE

(cannot be combined with other discounts or coupon codes)

A wide range available from our online Spreadshirt shops:

Let's do it for ME! (run by Jan Laverick) 

40 products with our campaign logo .. http://ldifme.spreadshirt.co.uk/

.. or design your own .. http://designerme.spreadshirt.co.uk/

The Big Sleep for ME (run by Julia Cottam) 

158 products in exclusive designs for our annual ME Awareness event. http://thebigsleepforme.spreadshirt.co.uk/

Make ME (run by Jon Watson)
20 products designed for our crafty campaign side, including 

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

ME Awareness (run by Carmel Hillary)

A range of great items with Invest in ME logo, as well as a number of other designs for awareness of myalgic encephalomyelitis and also fibromyalgia, are among the 51 products available from this shop. http://653855.spreadshirt.co.uk/

LET'S BE SEEN IN 2015!

(please note that Invest in ME will provide their own logo T-shirts FREE of charge for 
your awareness or fundraising events in aid of the charity.
You can email them at: info@investinme.org or contact them via their website).

Thank you for your support.

Let's do it for ME! 

http://ldifme.org/

in support of 

Invest in ME Charity

http://www.investinme.org/

15% off ends 13th January!

All seller proceeds from our online shops go straight to Invest in ME charity for biomedical research into myalgic encephalomyelitis (ME). This Spreadshirt offer ends January 13th.

15% off your entire Spreadshirt order (no minimum).

Voucher Code: HEART15 (can't be used with other codes)

Our online Spreadshirt shops are:

Let's do it for ME! (run by Jan Laverick) 

40 products with our campaign logo .. http://ldifme.spreadshirt.co.uk/

.. or design your own .. http://designerme.spreadshirt.co.uk/

The Big Sleep for ME (run by Julia Cottam) 

158 products in exclusive designs for our annual ME Awareness event. http://thebigsleepforme.spreadshirt.co.uk/

Make ME (run by Jon Watson) 

20 products designed for our crafty campaign side, including Hug ME. http://www.makemecrafts.com/Make-ME-Spreadshirt.html

A range of great items with Invest in ME logo, as well as a number of other designs for awareness of myalgic encephalomyelitis and also fibromyalgia, are among the 51 products available from this shop run by Carmel Hillary. http://653855.spreadshirt.co.uk/

LET'S BE SEEN IN 2015!

(please note that Invest in ME will provide their charity logo T-shirts FREE of charge for 

your awareness or fundraising events.

You can email them at: info@investinme.org or contact them via their website).

Thank you for your support.

Let's do it for ME! 
http://ldifme.org/
in support of 
Invest in ME Charity
http://www.investinme.org/

A New ME - LIMITED OFFER!

Hello all, so here's the offer I was telling you about!
Considering my book hasn't had any real marketing, it's done pretty well so thank you to those who have bought it.
However, I'd like to raise even more awareness and raise more money for "Invest in ME".

I've decided that for 7 days, both paperback and kindle copies will be cheaper. Not only that, but ALL money made from sales during this period will to go "Invest in ME".
After the 7 days, I will round up the total raised to the nearest "0" and post it on here. I will also screenshot the screen when I make the donation.
I will post again when this offer starts and post around the M.E. groups on here and also on Twitter.
It is available in ALL countries too but here I will post links for the UK & US Amazon:
UK Paperback - £3.94
http://www.amazon.co.uk/A-New-ME-Looking-future/dp/1499585497/ref=sr_1_1_bnp_1_pap?ie=UTF8&qid=1409036494&sr=8-1&keywords=a+new+me
UK Kindle - £1.85
http://www.amazon.co.uk/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-1&qid=1409036494
US Paperback - $6.55
http://www.amazon.com/A-New-ME-Looking-future/dp/1499585497/ref=tmm_pap_title_0?ie=UTF8&qid=1409037317&sr=8-1
US Kindle - $3.07
http://www.amazon.com/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-1&qid=1409037317
Lastly, share this post and tag people who you think would be interested.

Thank you everyone. The 7 days starts now so the offer ends this time next Tuesday (2nd September)!

A New ME by Barry John Evans

Is available in paperback and also kindle...

Hello everyone, I thought you may be interested to hear that I have had a book published! It's about my journey so far with M.E. whilst I also talk about my struggles with autism and depression too. If you'd like to know a bit more then I've recorded a video which you can watch via this link: https://www.youtube.com/watch?v=eG8bCFpbseE


Also, if you'd like to purchase a copy then you can do so through the following links: http://www.amazon.co.uk/A-New-ME-Looking-future/dp/1499585497/ref=tmm_pap_title_0?ie=UTF8&qid=1403374862&sr=8-1 - this is the link for UK readers who would like a paperback. It's currently at £5.89

http://www.amazon.co.uk/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=sr_1_1?ie=UTF8&qid=1403374862&sr=8-1&keywords=a+new+me - this is the link for UK readers who prefer to read a kindle. It's currently at £3.06

http://www.amazon.com/A-New-ME-Looking-future/dp/1499585497/ref=tmm_pap_title_0?ie=UTF8&qid=1403375040&sr=8-6 - this is a link for everyone who lives in the US and would like a paperback. Currently at $8.71

http://www.amazon.com/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-6&qid=1403375040 - Finally, this is a link for everyone in the US who would like a copy on kindle. It's at $5.19.

Also, if you buy it through this link then it generates an extra donation to Invest in ME at no extra cost to the buyer - http://www.amazon.co.uk/?_encoding=UTF8&camp=1634&creative=6738&linkCode=ur2&tag=ininme-21

It's also available in ALL countries and 10% of  ALL profits go to the charity "Invest in ME".

You can also check out the reviews on Amazon.

Hope you all enjoy!

Barry x

P.S. thought you might like to see a video I did for M.E. Awareness week on what's it's like to live with the illness: https://www.youtube.com/watch?v=TIvc_1SCKhI

Cake stall fundraising

From Tabi Dale:  So I decided to try a cake stall at a local school 'fun day' today to see if I could raise some money. Last year I did a run for Invest in M.E. and raised a little bit so thought I would do something else aswell...

My Mum has been ill with M.E. for most of my life (27 years) and as the years have gone on she has gradually got worse but has never given in to this life robbing illness. Nor does she moan about how ill she is, so for many years I didn't know the extent of her suffering. Now as her main carer I want to try and show as much support as I can and fundraising for Invest in M.E. comes into that. I feel like its my turn to show the same love and self-sacrificing care that she has shown me my whole life and still continues to now, despite how ill she is. 

I do enjoy baking so i thought it would be fun to sell some cakes... well the weather didn't end up making it as fun as i thought. 

i had an idea in my head about getting a nice fruit cake (didnt fancy making one myself) and icing it nicely with 'Invest in M.E. written on it... i've never iced a cake before... sadly i dont have a picture of my first attempt (shame as it would have probably amused some). this was my final attempt

 I found a lovely website that do little cake toppers that print your picture onto edible paper (there are many websites but this one was cheaper and offered to post the next day at no extra cost). i was quite excite when they came!

my 3 year old even helped make some cakes by making his favourite...chocolate rice krispie cakes

This morning came and i checked the weather, not good for the afternoon, thunderstorms and rain predicted. I was informed by email that the fun day was still going ahead and would mostly be inside so all would be ok.

off we went to set up and i was quite hopeful when we set it all up. 

There was another cake stall that had their cakes priced a bit lower so i lowered mine but sadly as the rain and thunder started the people thinned out (although many came inside i think most went home). 

By the end of it i had sold just under a 3rd of the cakes, raising £25 and handed out a few leaflets. I think i'll stick to doing runs!

Although I didn't raise much perhaps at least I have raised some awareness and that is half the battle.

UPDATE by Let's do it for ME .. some sweet soul matched Tabi's fundraising with a donation to our JustGiving page for the Invest in ME / University College London (IiME/UCL) rituximab clinical treatment trial with this kind comment .. "Thank you to Tabi Dale & Son for your fantastic efforts on behalf of Invest in ME. Hope you don't mind if I match your fundraising amount as a thank you :) Donation by Anonymous on 29/06/14 £25.00 + £6.25 Gift Aid.  https://www.justgiving.com/ritux4meuk/ Big THANKS all round!

Free on Kindle 11-14th May - Rafi Brown and the Candy Floss Kid

From Sue Stern:  Hello everyone,

Jo’s asked me to talk about my fundraising for Invest in ME. Actually it was done in a back- to- front way and I'll explain later what I mean by this.

But first I should begin by telling you about my connection with this horrible condition: I’m the mother of someone who developed this in 1994 while at university. In 1997 he spent ten weeks at the National Hospital for Neurology in London, arriving there unable to sit up, barely able to speak, but leaving ten weeks later able to walk round Queen Square, and returning home, knowing he could push through and he’d be better. His experience at this time consisted of extreme exhaustion. He was about 60% recovered when he fell ill with what emerged to be glandular fever. Epstein-Barr – From then on, in 2003, he has suffered from severe M E with additions, vertigo, tinnitus and a host of other things. Like all of you, he has fought – he’s a jazz musician, practising daily when he can. Tried everything, everywhere, medicines and alternate therapy – but nothing has helped.

A little about me: while Richard was at university, I rediscovered my old love of writing, joining a women’s writing group in Manchester and beginning to publish seriously in the year 2000. For an MA in writing the children, I wrote Rafi Brown and the Candy Floss Kid. It was my third novel, and after many rewrites, I decided to set up my own little publishing house, Red Bank Books to publish it, in February 2013. There followed, a great learning curve, working with Illustrator, Heather Dickinson and book designer in Texas (!) Who helped enormously with the layout and provided the correct PDFs for printing.

Like other writers, I write about people I have known or people I know, but transformed into new characters – Rafi is based on someone I knew well, he was dyslexic but is now a very successful person. I wanted to show that people with disabilities, are people first and foremost, within innate qualities, there if you can see them. Rafi just appeared to me, I could hear his voice, and I had an idea of the plot, which changed when Candy Floss emerged in a park nearby.

If you read the blurb later, you will see that she has a secret, revealed near the end of the book, which I don’t tell children, and if you buy the book, or download it free for M E awareness month, please don’t tell children who might read it! But I can tell you, Candy’s mum, Gemma, has M E, and after awful things happening with a social service carer, Candy, aged 11, looks after her mother on her own!

Now – fundraising –all the proceeds I’d made from selling this book since February, 2013 have been donated to Invest in M E. So that’s why it’s back to front. And I managed to complete the cell I'd chosen on the matrix rather quickly! I've been involved a little with IiME for some years, buying copies of Lost Voices quite a long time ago.

Because I 've now started writing other things, I’m not promoting the books so actively until I recalled it was M E awareness month.

I do hope you will all help me, and help us by downloading a copy – from 11 to 14 May, the Kindle version will be free from Amazon! Here are the links:

Amazon UK
http://www.amazon.co.uk/Rafi-Brown-Candy-Floss-Kid-ebook/dp/B00BZDOAY8/ref=kinw_dp_ke

Amazon.com
http://www.amazon.com/dp/B00BZDOAY8/ref=cm_sw_r_fa_ask_wgoPH.15Q804C

Please do download it, even if it’s hard for you to read, maybe someone else in the family will read it. Please share this with your friends. The more downloads there are, the higher it will go on the Amazon website, and then I hope very much that it will be seen by many more people, and they’ll find out something about M E.

I have an idea to tell Candy Floss’s story too, and for a follow-up to this book with Rafi. I’ve attached photos and in the next post I’ll attach some cartoons for you to download for children who might like to colour them in. Here’s the link to my website: www.suestern–writer.co.uk

Please do share this,if you can. And as one picture is work a thousand words, I thought I might add a couple -which hasn't quite happened so I'll post this and try again soon.

Warmest wishes to you all for better days, weeks, months and years!

Sue

Here are the links so you can download it now:
Amazon UK
http://www.amazon.co.uk/Rafi-Brown-Candy-Floss-Kid-   ebook/dp/B00BZDOAY8/ref=kinw_dp_ke
Amazon.com
http://www.amazon.com/dp/B00BZDOAY8/ref=cm_sw_r_fa_ask_wgoPH.15Q804C

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

ME Awareness May 2014!

Quick one-stop shop post for links to the various events organised by Invest in ME or their supporters - spoilt for choice with something to suit all ages, tastes and abilities, so we hope you will join in and please let us know if there are any missing links or if you'd like a link added as we'll try to keep the post updated. 

9th Invest in ME conference events - IIMEC9 - are any of your health professionals going?  There is a discounted rate for medics referred by a local support group and a leaflet to download or print.

May 1st - 1 Day - £1 - 1st of the month is the day to donate just £1 to 1st class IiME research!

LIGHT UP THE NIGHT FOR ME on May 12th - can you help IiME have any public buildings in your country or area lit up blue for ME Awareness on May 12th?  Can you light your room or home blue?
International Event Page.

Turn your body blue for M.E - anyone can take part - post a photo of yourself or a body part in blue and donate to Julieann's JustGiving page. 

Selfie Facebook Fundraiser May 12th - based on the idea for cancer awareness and again, anyone can take part - post pictures of yourself on your social networking sites and donate to Clare's JustGiving page. 

Sewber Moments Online Fundraising Raffle - winners to be announced on May 12th

Sarah Mozer's Online Charity Fundraising Raffle - winners to be announced on 12th May. 

The Big Sleep for ME - now in its 3rd year and going global!  Including .. 

Where's Bear competition May 11th-17th

Poetry Competition - deadline for entries May 31st

T-shirt design competition - deadline for entries May 31st

The Princesses and M.E - their first year and what a team! Fancy being a princess for a day?

The Zzz...Factor for IiME Comedy Club - great entertainment in the comfort of your own home.

Walk for ME in its second year with the first walk for IiME already completed.

Walk for ME Isle of Man - wonderful team new on board for 2014 walking this coming weekend.

Mass Observation Diary on May 12th - for the general public in UK but an ideal opportunity to raise ME Awareness given the date. 

#May12BlogBomb - if you are a blogger or would like to write a guest blog for May 12th.

Light a Candle to Remember M.E. A poignant event created on behalf our lovely Rosa Amor.

A Vigil for International Awareness Day on May 12th in aid of Invest in ME Research, and Dr. Ian Lipkin's appeal (rituximab and microbiome research projects).

The above are group events that anyone may take part in. Items that Seren manages to crochet over 12 hours on the 8th May will be available for sale so you may wish to keep an eye on her Facebook page -Seren's 12hr Crochet Marathon for Invest in M.E. - She is hoping to reach her £1000 target for IiME.

Have we missed any?  Let us know!

Thank you for taking part or supporting the above.

To get in gear for May ME Awareness - visit our Shop for Biomedical ME Research - you can save £5 orders above £30 on the range of products in all the online Spreadshirt shops from 2nd to 8th May - ideal timing! Voucher code: MAY14 (cannot be used with other codes).  

Not forgetting Mama Chill's dizzyjam ME Awareness ranges with all proceeds to Invest in ME.

Click here for a variety of other ME Awareness materials.

Ready for May ME Awareness?  Let's do it for ME!

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 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

POSTS

Let's Move the Goalposts for ME!

APRIL UPDATE:  This whistle-stop tour of 92 football league grounds in 92 hours by four friends of M.E. sufferer Ian to raise awareness and funds for a ground-breaking medical treatment trial runs from 16th to 21st April.  Big THANKS to all who are helping to get maximum coverage and support from football clubs and media across the country for this incredible challenge by the fan-tastic foursome - Team 92 for ME!  To donate to Cat, Mike H, Mike W or Raza on JustGiving or text IIME92 £1 (or £2, £3, £4, £5, £10)  to 70070. You can also follow them on Twitter @92forME or find them on Facebook or see their blog.
The tour kicked off in the West Country with this great piece by regional ITV News.  Team leader Mike Harley was also featured with a chat on BBC Radio 5 Live (fwd to1 hr 46 mins). 

Team 92 for ME Flyer

To make it easier, we drafted a letter you can use to contact your local newspaper, local news website, local TV stations, radio and football clubs (see below).  You could also post on media and football club Facebook pages or tweet them the link to the event website (link below). This is a great opportunity to raise public awareness of myalgic encephalomyelitis (ME) and biomedical research into this disease.  

If you get a positive response or hear of local media coverage, please tell us or Team 92 for ME so that they can add the info and links to their website. 

Graphic created by Ian showing all the fantastic clubs supporting the event so far.
http://www.92in92.blogspot.co.uk/2014/03/thanks-to-all-these-fantastic-clubs.html

List of club responses so far.

http://www.92in92.blogspot.co.uk/2014/03/club-responses-so-far.html

List of media responses so far.
http://www.92in92.blogspot.co.uk/2014/03/media-roundup.html

Here's a letter you can use to contact media and clubs.

Subject: Football Ground Charity Challenge

A team of football fans from Bristol are aiming to visit all 92 English football league grounds in 92 travelling hours in support of  Invest In ME (www.investinme.org) - a leading M.E. research charity in  April this year.

The team start their challenge on Weds 16th of April and are aiming to raise awareness for myalgic encephalomyelitis - an illness which they feel does not get the funding/research as many others. Their childhood friend, Ian, has been off work with the illness for over 7 years and now Invest in ME are raising funds for a ground-breaking new research trial that could help him and up to 250,000 other UK sufferers get back to living normal lives. 

Team leader Mike Harley told us: "The idea is to reach the grounds at a time where we can give out information and maximise on raising the profile of M.E, the need for research into the illness and the Invest in ME charity. It's going to be a gruelling challenge but one as football fans we're all looking forward to!" 

They are set to appear on ITV News, BBC Radio and Talksport and are hoping to raise the profile as much as possible. They will be starting the event in Plymouth and finishing up at Middlesbrough on Monday 21st of April having completed the 2700 mile challenge.

Over 50 clubs across all 4 divisions are helping to publicise their event and you can find more info on their challenge through their website and sponsorship page below. 

The charity has had a flag especially made for the tour and this will be taken along and used for photo opportunities at all of the clubs. The team are 4 friends from Bristol, (Left to right in pic); Mike Harley (31), Raza Rizvi (32), Mike Ward (32) and Cat Harley (31)

There's more info on their event at www.92in92.blogspot.co.uk and www.justgiving.com/teams/strobl

Also on Facebook www.facebook.com/92forME and Twitter @92forME

It would be brilliant and much appreciated if you could help raise public awareness of this charity challenge. Thanks in anticipation.

Kind regards,

Team 92 for ME - Mike Harley (31), Raza Rizvi (32), Mike Ward (32) and Cat Harley (31) 

The ball's in our court - let's do it for ME!

(First posted 16th March)

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 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

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!
 

Invest in ME February 2014 Newsletter

With thanks to Invest in ME - February 2014 Newsletter includes: * IIMEC9 * BRMEC4 * IiME/UCL UK rituximab clinical treatment trial * IiME/UEA UK gut microbiota study * IoM * FDA * IACFS/ME * APPG * ME Awareness and Fundraising Events * The Matrix * Books on ME * Films on ME *

Invest in ME February 2014 Newsletter published 15/2/2014 IIMEC9 - 9th International ME Conference Registration has been open since January for the 9th Invest in ME International ME Conference 2014 which will take place in Westminster, London, on 30th May 2014.  The conference has been awarded the full 6 points of CPD accreditation.  We welcome presenters from eight countries.  The theme of the 2014 conference is Synergising Research into ME.  This reflects the move to bring together biomedical research into ME to maximise the potential to find treatments and causes.  We have recently added to our list of presenters and we welcome Professor Angela Vincent, Emeritus Professor of Neuroimmunology at the University of Oxford. Professor Vincent has vast experience in neuroimmunology and runs the Clinical Neuroimmunology service which is an international referral centre for the measurement of antibodies in neurological diseases. Her major interest is in the role of autoimmunity in neurological diseases.  Dr Amolak Bansal will also return to provide an overview of diagnosis and treatment in UK and will lead a panel to discuss diagnosis and treatments for ME. Dr Bansal is heavily involved in the research being funded by Invest in ME and is the consultant leading the CFS service at Epsom and St Helier Hospitals Trust in Surrey.  Professor Simon Carding ofUEA/Institute of Food Research, who is leading the IiME/UEA gut micriobiome project, and Professor Jonas Blomberg, who has recently published research funded by our European ME Alliance colleagues at IMET, compliment the agenda.   More information about the conference is available here - http://www.investinme.eu/agenda.html Biomedical Research into ME Collaborative Meeting - 4 Collaborations and cooperation between ME researchers, and researchers from other fields, is necessary and productive.   Prior to the conference the charity has organised the fourth Invest in ME Biomedical Research into ME Collaborative Meeting to take place on 29th May in London with experts from around the world discussing ME and current and future initiatives.  Those attending include researchers at the cutting-edge of their fields - not necessarily in ME research - who will also be able to discuss the latest biomedical research initiatives underway or planned.  This seminar has already been given the maximum CPD points by the colleges. 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 Possibly the 2 Most Important Research Projects for ME in the UK We have managed with the help of our resourceful and imaginative supporters to raise funds to start our foundation research project at UEA/IFR. The UEA/IFR gut microbiota project began in October 2013. This has been an impressive achievement based on past ME fundraising attempts. In the absence of any credible or scientific strategy being presented by those responsible for public funding of proper research into ME to find causes and treatments then patients have to find and fund their own.  There are now very good researchers and clinicians willing to do research in this area and we need to continue to influence the way forward. See more here http://www.investinme.org/LDR%20newslet%201312-01.htm Within this project we have also been able to sponsor an intercalating 4th year medical student at UEA to perform a one year MsC degree within this project and to work alongside the PhD student. This allows us to increase the base of experience and research opportunity, as was envisaged with our original proposal for a centre of excellence for ME. Another complementary project is going to look further at Autoimmunity and ME/CFS with the ME consultant who is working with UEA, Dr Amolak Bansal, to perform a detailed analysis of antibodies binding the hypothalamus. To enable this project to go ahead an additional funding has been pledged by our European ME Alliance partners the Irish ME Trust). This is not the end of the story at all though. We continue to fund for more gut microbiota-related research which will follow on. Our JustGiving page is at http://www.justgiving.com/investinm-e and we welcome help in distributing knowledge of these crucial projects. Rituximab clinical trial for ME  In May we set out for another project together with the Let's do it for ME team and we embarked on the objective of initiating a rituximab clinical trial, something we had announced we wished to attempt at the 2012 IIMEC7 conference.  The target of £350,000 was set to be able to initiate a trial at UCL to treat a group of ME patients with rituximab based on the promising results from Norway.  Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at UCL, has been the charity's advisor on this. Professor Edwards and Dr Jo Cambridge were behind the groundbreaking proof of concept study of rituximab in the treatment of rheumatoid arthritis, and the project has been progressing well.     After several meetings with UCL it has been decided to conduct the research in two parts.  The first part involves validating and expanding on Dr Bansal's B cell study and this is ready to start soon. The second part involves the actual clinical trial using rituximab to treat ME/CFS patients selected from the cohort taking part in the B cell study. This will start once the protocol that depends on the B cell study, funding, peer review, ethical approval and other administrative processes are in place. So far we have managed to raise £283,000 of the initial target of £350,000.  The Let's Do It For ME team have created a mascot for the project - Professor Ldifme - and the professor is now assisting the UCL team and also the UEA team conducting the gut micribota project.  You can read more of the rituximab research at our dedicated web site at this link -www.ukrituximabtrial.com See also - The Matrix - http://www.ukrituximabtrial.org/IIMEUKRT%20Matrix.htm The idea of the Matrix is an idea to encourage individuals, organisations, teams and companies to take a slot to aim to raise up to £1000 each. 100x £1000 events would raise £100,000 and we are pleased to see a many slots reaching their target - but many more are needed. If you have an idea which can encourage a group, a community a business or a wealthy philanthropist and wish to take a slot then please contact us at info@investinme.org.  FAQs on the rituximab clinical trial We receive questions from patients wishing to take part in the trial which is understandable as ME patients have so few options for treatments and they are generally willing to be part of any research initiatives.  However, the charity, as funders, can have no influence on the selection process. This will be the responsibility of the research team and consultants.  The trial will be aiming to find likely responders based on the initial B cell study. The clinical trial protocol will not be designed until results from the preliminary B cell study start to come in and the patients will be selected from a cohort of patients who took part in the initial B cell study. The consultants in charge of patient selection for both parts of this trial will be those working at the Epsom and St Helier and UCLH NHS CFS clinics.More details and answers are available on the IiME web site which has been created for the project - http://www.ukrituximabtrial.org/IIMEUKRT%20FAQ.htm  News of the project is available in the news page at http://www.ukrituximabtrial.org/IIMEUKRT%20News.htm World Events The Institute of Medicine (IOM) contract -a new ME/CFS definition  One of the most talked about topics recently has been the US government health services contacting the Institute of Medicine (IOM) to produce a new definition for ME/CFS. The cost of this contract is in the region of $1million! Over 50 ME/CFS researchers and clinicians wrote against this contract asking for adoption of the Canadian Consensus Criteria. Invest in ME wrote to Secretary Sebelius in support of the many researchers/clinicians and patients advocates who signed up to support these professionals  [http://www.investinme.org/IIME%20Statement%202013-11-01.htm]. Recordings of the public comments made by many notable and well spoken US advocates can be viewed herehttp://www.youtube.com/user/instituteofmedicine/videos. Everyone's message was more or less the same asking for the contract to be cancelled.  A British lawyer Valerie Eliot- Smith also blogs about the importance of this debate and other topical issues here -http://tinyurl.com/l9lwvl5  FDA "The Voice of the Patient ' document  This document, produced by the FDA from the meetings held on 25th April 2013, is well worth reading and keeping for future reference.  It is a series of reports from the U.S. Food and Drug Administration's (FDA's) Patient-Focused Drug Development Initiative "The April 25 Patient-Focused Drug Development meeting gave FDA the opportunity to hear directly from patients, patient caretakers, and other patient representatives about their experiences with this debilitating condition.  The discussion focused on two key topics:  (1) disease symptoms and daily impacts that matter most to patients  and  (2) patients' perspectives on current approaches to treating CFS and ME. The questions for discussion (Appendix 1) were published in a Federal Register notice that announced the meeting."  http://www.fda.gov/downloads/ForIndustry/UserFees/PrescriptionDrugUserFee/UCM368806.pdf  IACFS/ME Conference  The IACFS/ME 11th Biennial International Research and Clinical Conference to be held in San Francisco, California, USA, March 20-23, 2014. More information here - http://www.iacfsme.org IiME AWARENESS and FUNDING EVENTS A special mention for our supporters. We often thank our supporters and try to convey the appreciation of so many patients and families who are not in a position to do more themselves - and so rely on the efforts of the charity and its supporters.  We are privileged to have such great support. The Let's Do It For ME campaign also has to have special mention.  The impressive imagination and vision which has dominated this campaign to aid Invest in ME in establishing proper research at prestigious universities and increase research collaboration is only exceeded by the sheer positivity shown by those running campaigns and those taking part in them. We must not forget the great efforts of supporters using  e-bay to help the charity by selling items in aid of biomedical research. It has been a great honour to work with people who are positive, creative, determined and show the integrity and vision which is required to overcome and overturn a generation of neglect by those responsible for treating, funding and representing ME research. In a short newsletter we cannot show all of the wonderful efforts  being made to support awareness and biomedical research. There are many whose efforts are not well known but their support has helped to ensure better  education about ME, more awareness of the illness and greater possibilities for biomedical research to be  developed.  We thank all of our supporters for continuing to  help us throughout the year. We hope you  realise how much we appreciate your support. '92 in 92' Challenge for  Invest In Me  The world of  ME has many hurdles - one of them being isolation for  patients. It is a too infrequent an occurrence for friends  of someone with ME to stay in contact, let alone actively do  something to help. Many ME patients can feel isolated and abandoned by their friends  and even family members.  So we are amazed at the reaction  and spirit of a group of four friends  who are aiming to visit all 92 English Football League Stadiums  in under 92 hours in support of Invest in ME and to raise  money and awareness for the Rituximab Trial. They are doing this to help their friend who has ME. The event begins on April 16th 2014.  We are really grateful for  this group of four who are doing an amazing job raising  awareness before the event has even started.  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 here http://92in92.blogspot.co.uk and make donations to support the amazing event click here           The charity has had a flag especially made for the tour and this will be taken along and used for photo opportunities at all of the clubs.   The Big Sleep Julia Cottam is once again organising The Big Sleep for ME  event in May.  Julia and the team did a fabulous job last  year and this annual event is growing nicely and looks  to be a great event to be involved in during an ME Awareness  Week from 11th to 17th May. You can read more  about the many ways to get involved here  http://www.thebigsleepforme.com    Walk for ME This  is the second year that Walk for ME event is being organised  and it is another great event for almost anyone to take  part. The website has a gallery of last year's walks and  gives easy to understand information how to get involved.  Those helping Invest in ME in this event will be assured  that all funds received are used for activities for  biomedical research into ME. Find out more from the website here - http://walkforme.co.uk/  Several active individual pages on Just Giving have been set up to help IiME - Bath Marathon Two entrants  to the Bath half-marathon are raising funds for IiME Mark Webster is the son of ME patient Isabel  Webster. Mike's JustGiving page and story are at-Mark's  Bath Half Marathon 2014 page Catherine Ellicott is running also - her JustGiving page is at Cath's Bath Half Marathon 2014 page. Already Catherine has achieved an incredible total. Our grateful thanks to Mark and Catherine on behalf of all patients and carers.  London Marathon Stephen Cox will be the charity's first supporter running in the London marathon on 13th April. Stephen has set up a JustGiving page - http://www.justgiving.com/Stephen-Cox4 For a small charity such as Invest in ME it has always been difficult having an entry in the London marathon as the event seems geared for those charities who can afford to buy places. So we are incredibly grateful to Stephen for breaking the mold on this. We would welcome any support in raising awareness of ME with these marathon events.   Arctic  Marathon Marathons are no mean feat to accomplish  - for anyone. An extreme way of raising awareness of ME  and much-needed funding for biomedical research into ME has now been set in motion by Mike Shepherd. Mike is taking on the North Pole Marathon.   As Mike writes on his web site -This is the challenge of a lifetime and it is the result of my daughter having ME since September 2008. I have seen firsthand how damaging ME can be to a person's life, their prospects and their family. http://www.shepherdfitness.co.uk Books on ME MY A-Z OF M.E. (Myalgic Encephalomyelitis)  by Ros Lemarchand  Do you feel that no one  understands you?  Do you feel alone with this illness?  Do you  find it hard to express how you feel?  Ros Lemarchand's  book of poems about life with M.E. is a must for you. MY  A-Z OF M.E. (Myalgic Encephalomyelitis) is available in both Kinfle and papaerback editions http://www.amazon.co.uk/.../dp/1492735116/ref=sr_1_6 Ros also has a YouTube video about the book  - click here     Can I Tell you about ME/Chronic Fatigue Syndrome? This  book by Jac Rayner. IiME chairman Kathleen McCall has reviewed the book for the publisher and included the following comments - "This book is very clear and easy to read.  It is a great  resource that can be used by ME patients and their carers to  explain and inform others what it is like to be affected by  ME/CFS.  Not only children but adult relatives, friends and  teachers would learn a great deal from this book." Available on Amazon at this link Jac's book is also to be translated into Norwegian. Rafi Brown and the Candy Floss Kid Sue Stern has raised over £1000 by taking a  MATRIX slot and donating proceeds to IiME from sales of her  children's novel last year - just a year ago. One of Sue's sons has been severely affected  by M.E. and other related conditions for many years. Her book has ISBN code 978-0-9574948-0-0. Sue was interviewed by Kath, at Wythenshawe local radio, on her programme, 'Disability Matters'.  As a result of her suggestion, I contacted the Royal National Institute for the Blind, who are now making a large-print version of the book, and when funds allow, a Braille version! Sue's MATRIX slot is here - click here APPG for ME ME patients are continuously denied benefits as the training  given to healthcare professionals and medical assessors is  not based on the biomedical basis of ME. So Invest in ME used the opportunity  presented by the recent APPG for ME in UK parliament where  the minister for disability Mike Pennington attended the  meeting. One of Invest in ME's questions to the  minister did get through and received a response. This, and the other questions posed by  IiME which were not asked are available - click here We encourage as many people as possible to make their views  known to the minister - stating that the main barrier to work and  living life to the full with ME patients is poor health and  lack of proper medical care. The lack of proper medical care  is due to lack of funding given to biomedical research to  look into the underlying causes of ME and finding a  diagnostic test. The DWP co-funded the flawed PACE trial which  sought to look into management of ME using CBT, GET or  pacing without the cause of ME being known and which have  shown to be a disastrous waste of money with no worthwhile  result. All ministers carrying any responsibility for  patients has to be made aware of these realities. FILMS  on ME Finally noteworthy is a new film about ME which promises to raise awareness about ME at an international level in a way that may help us all change things. With  impressive funding from a KickStarter campaign Canary in a Coal Mine follows the lives of several remarkable people living with a Myalgic Encephalomyelitis. They are forced to leave careers they loved, abandon the dream of having children, or face the prospect of being locked away forever in their homes and bedrooms. Worse still, most doctors, and sometimes those closest to them, don't even believe they're really ill.  The film is sure to make an impact.  http://www.canaryinacoalminefilm.com/#!about/c2414xxyy Best wishes to all Invest in  ME Return to Newsletter Home  Page Contacts: Inquiries All inquiries to Invest  in ME -  info@investinme.org     Subscribe To subscribe to receive this free newsletter by email, click here.  Invest in ME UK Registered Charity  Nr. 1114035 PO BOX 561, Eastleigh  SO50 0GQ, UK