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March 2014
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31 March 2014
Invest in ME March 2014 Newsletter
14 March 2014
The Big Sleep for ME is back!
The Big Sleep for ME is back for its third successive year. With your help, and that of its business sponsor Vintage Wedding and Home, it’s going to be even bigger and better. This fun and inclusive awareness and fundraising event for biomedical research, includes a mass sleepathon that runs throughout ME Awareness Week 11 – 17 May, as well as an opportunity to hold your own ‘sleep inspired’ event, such as PJ parties, PJ Pride Days, Sleepwalks, Sleep-cycles and more.
The Sleepathon is extremely easy and flexible to take part in and means that anyone, even those with severe ME, can do their bit. All you need to do is lie back, make yourself comfortable, and, if you really want to, sleep! Do it at home or anywhere that takes your fancy, either on your own or as a group. And if you feel like it, dress up for the occasion. If fundraising, just get people to sponsor you, and for awareness, just let others know you’re taking part. The same applies if you’re holding your own ‘sleep inspired’ event.
The Big Sleep for ME likes to celebrate ME Awareness month in style, and will be getting in the party mood by running competitions and even having a Facebook disco. Anyone is welcome to join in the competitions and disco, so keep an eye out for updates on Facebook and Twitter. You can now also buy all sorts of fab Big Sleep merchandise in their online shop, from tops and sleepwear to their very popular Snugzie bear. All purchases help to raise even more money for biomedical research as all shop profits are donated. There are also rumours that badges and balloons will be available shortly to make your Big Sleep really go with a swing! It’s all happening at The Big Sleep for ME.
It’s great to have such an inclusive event that means everyone, from sufferers to healthy supporters, can unite together to do something positive for ME. The event is already shaping up nicely and participants have been coming up with lots of fun ways they’ll be taking part, such as a PJ coffee morning and The Princess and ME, a group of ME sufferers who will be dressing as princesses and turning into real-life Sleeping Beauties to coincide with ME Awareness Day. So, why not join in the fun and do something for ME?
The Big Sleep for ME was set up to fill the need for a completely inclusive ME event that anyone, including those with severe ME, could take part in. Given the limitations severe ME imposes, a great deal of thought went into what kind of event could take place. In the end, the solution was so obvious. Since, many with ME have to spend a lot of time lying down either on a sofa or in bed and some sufferers are completely bedbound, why not turn this into something positive and have a mass Sleepathon. The Big Sleep for ME was born! Whilst the event now encompasses all manner of ‘sleep inspired’ events and is about having fun, it also has a serious side which is to not only raise much needed awareness and fundraising for biomedical ME research, but also to increase awareness of ME generally.
Find out more about the event on their website. The event also has its own Facebook page and is on Twitter, you can email them too. To make things easier, the team has set up a group JustGiving page which you can join and there’s a downloadable Fundraising and Awareness pack and School Leaflet, should you wish to get a school involved, in their online toolkit. You need to register to take part, but as thank you you’ll be entered into a Free Prize Draw. This helps them to keep track of everyone and plan for future years.
If you can’t take part, but would like to support the event you can always sponsor someone you know, or make a donation to The Big Sleep for ME fundraising group on JustGiving.
With special thanks to Julia Cottam from our ‘Let’s do it for ME’ team for thinking this up this event, and for all the hard work she puts into this inclusive and positive venture, as well as to everyone taking part.
We can all make a difference to ME!
12 March 2014
The Zzz....Factor
For those who are unaware, we are creating a MEEPs version of youtube, based on ME humour, as part of IiME's ME Awareness 2014 activities.
Mhahaha !! Another diabolical scheme to relieve you of your money to help fund IiME medical research and awareness programs. You'll need the password to see the "acts", which you'll only get with your JustGiving donation receipt.
Thank you to all who have contributed to the Zzz...Factor already. I know there are some of you who are working on your own Zzz...Factor entries - no pressure, Linda C and Jeffrey J. :D The more the merrier - literally. Please keep them coming.
I bet loads of you have funny videos of pets and childrens antics. Send them in (No, not the pets, and DEFINITELY not the children !!!!!) to IiMEcomedyclub@gmail.com and we'll put together a "You've been framed" section. May be worth emailing details first, as file size can be a problem.
All together now : Always look on the bright side of life ........
Tony Bradstock
11 March 2014
Letters for Louise- March update
Hello again!
I'll briefly talk about what the Letters for Louise project is if you haven't heard of it already, but here are the links to the two previous blog posts for more information, in case I miss something!
September blog post
January update
(I hope they work...!)
Back in September, I was completely at my wits end about the way ME seemed to be shaping my life (I'd just had to give up the job I loved and had worked so hard for), and the worst thing was that there seemed to be so many people I came across who just didn't 'get' ME. We've all come across them I'm sure- those who think ME is glorified tiredness, a way of attracting attention or sympathy, or an excuse to go through life, having fun by doing the bare minimum. I was talking (more like ranting) to a friend one afternoon and said something like 'it's just a shame there isn't anything with loads of ME sufferers saying it how it really is'. And I can remember thinking that maybe I could get something together. Something where there were loads of us sharing our stories, and where we could all say 'it's not just me'. And that's where the Letters for Louise project came from.
Since September, I've been putting together a book where lots of lovely people have been writing letters. Initially the idea was for people to write letters addressed to anyone in their life who has shown them a lack of understanding, disbelief or neglect about ME. But actually, I've had some lovely, really touching letters addressed to people who DO get it. Those very special people who are always there and are just amazing. And actually they have just as much of an impact as the ones to people who haven't been so good... it's been amazing to have both types of letters.
I want to take this opportunity now to thank every single person who has sent me something SOOOOOO much. I'm very humbled by the fact that I now have around 80 letters- that is staggering and something that I never had thought would happen. You are all just the best and if there is one good thing about ME, I think it can really show community spirit at its best and this just proves it. I wish I could personally come and give you all a massive hug (or a big smiley wave if you are touch sensitive!!).
There's still time to get involved! I'm hoping (and am on track) to get the book published for the start of ME Awareness Week. Therefore I am asking for all letters to be with me by Monday 31st March. It was be absolutely wonderful if we could get to 100 letters- this is really shaping up to be a very powerful (and hopefully very helpful) book thanks to all of your fantastic contributions. If you want to be involved, you can choose to have your name included or to remain anonymous. You don't have to write an essay- you can write as much or as little as you want, and you can write as many letters as you want, all addressed to whoever you want. You can either email letters to me at looby_louness@hotmail.co.uk (awful email address I know, but I've had it since I was about 14...!) or you can join the closed Facebook group Letters for Louise! where there's a lovely supportive atmosphere building as people share their letters. This is your chance to get your voice heard!
I turned 25 just over a week ago, and it made me think a lot about my personal journey over the years with ME. At one time I was bed bound for around six months, and I'd never have thought then that any good could come out of having ME. But as I said in my last blog post, the lovely people at IiME and 'Let's Do It for ME!' have inspired me by always being so positive and upbeat and really making the most of the cards they've been dealt... I've met so many brilliant people through this project (and never thought I'd be publishing a book...) All the profits from the book (and lots of virtual hugs) will be going to IiME!
We're so close to getting the book out there now. I've started the whole proof-reading/ organising process (the spell checker constantly tries to change 'myalgic' to 'magical'... if only!) and I've got someone completely fantastic and very talented designing the cover. All it needs now are more of your amazing letters.
I'm so excited about this and can't wait to share it with you! x
I'll briefly talk about what the Letters for Louise project is if you haven't heard of it already, but here are the links to the two previous blog posts for more information, in case I miss something!
September blog post
January update
(I hope they work...!)
Back in September, I was completely at my wits end about the way ME seemed to be shaping my life (I'd just had to give up the job I loved and had worked so hard for), and the worst thing was that there seemed to be so many people I came across who just didn't 'get' ME. We've all come across them I'm sure- those who think ME is glorified tiredness, a way of attracting attention or sympathy, or an excuse to go through life, having fun by doing the bare minimum. I was talking (more like ranting) to a friend one afternoon and said something like 'it's just a shame there isn't anything with loads of ME sufferers saying it how it really is'. And I can remember thinking that maybe I could get something together. Something where there were loads of us sharing our stories, and where we could all say 'it's not just me'. And that's where the Letters for Louise project came from.
Since September, I've been putting together a book where lots of lovely people have been writing letters. Initially the idea was for people to write letters addressed to anyone in their life who has shown them a lack of understanding, disbelief or neglect about ME. But actually, I've had some lovely, really touching letters addressed to people who DO get it. Those very special people who are always there and are just amazing. And actually they have just as much of an impact as the ones to people who haven't been so good... it's been amazing to have both types of letters.
I want to take this opportunity now to thank every single person who has sent me something SOOOOOO much. I'm very humbled by the fact that I now have around 80 letters- that is staggering and something that I never had thought would happen. You are all just the best and if there is one good thing about ME, I think it can really show community spirit at its best and this just proves it. I wish I could personally come and give you all a massive hug (or a big smiley wave if you are touch sensitive!!).
There's still time to get involved! I'm hoping (and am on track) to get the book published for the start of ME Awareness Week. Therefore I am asking for all letters to be with me by Monday 31st March. It was be absolutely wonderful if we could get to 100 letters- this is really shaping up to be a very powerful (and hopefully very helpful) book thanks to all of your fantastic contributions. If you want to be involved, you can choose to have your name included or to remain anonymous. You don't have to write an essay- you can write as much or as little as you want, and you can write as many letters as you want, all addressed to whoever you want. You can either email letters to me at looby_louness@hotmail.co.uk (awful email address I know, but I've had it since I was about 14...!) or you can join the closed Facebook group Letters for Louise! where there's a lovely supportive atmosphere building as people share their letters. This is your chance to get your voice heard!
I turned 25 just over a week ago, and it made me think a lot about my personal journey over the years with ME. At one time I was bed bound for around six months, and I'd never have thought then that any good could come out of having ME. But as I said in my last blog post, the lovely people at IiME and 'Let's Do It for ME!' have inspired me by always being so positive and upbeat and really making the most of the cards they've been dealt... I've met so many brilliant people through this project (and never thought I'd be publishing a book...) All the profits from the book (and lots of virtual hugs) will be going to IiME!
We're so close to getting the book out there now. I've started the whole proof-reading/ organising process (the spell checker constantly tries to change 'myalgic' to 'magical'... if only!) and I've got someone completely fantastic and very talented designing the cover. All it needs now are more of your amazing letters.
I'm so excited about this and can't wait to share it with you! x
28 February 2014
Zzz....Factor call for material
Have you got the Zzz.....Factor ?
Solihull and South Birmingham ME Support Group have.
For ME Awareness Week 2014, one of the many ways we are raising funds for Invest in ME is through the medium of humour.
We know there is a rich resource of humour within the ME Community and would like to tap into it to Help us Help Ourselves.
As you are able to read this, you will almost certainly be using a Device that will record Voice, Pictures and Video.
Send us a Recording of a few Jokes, some funny Stories, or a "You've been framed" Video.
And best of all, you can do this from your Bed in PJ's and without Makeup for that authentic MEEP look.
Lets show the world that We're Down but not Out and that
MEEPs Rock !!!!!
Please contact us with ideas or material at :
27 February 2014
Are you looking for a Charity to Adopt?
from Tanya: I know many social clubs or company's like to support a different charity each year and wonder - is your workplace, local social club or school looking for a charity to support?
If so, I urge you to consider supporting Invest in ME and helping us to raise money to fund research into causes and treatments, whilst also raising awareness for all the adults and children currently suffering from this illness.
For further information about the Charity please take a look at these websites where you can also contact them for further information if you require it;
and their supporting campaign
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
There are so many different ways you can raise funds and get involved, here are just a few;
Help us Perform Biomedical Research into ME
Take a slot in the Matrix to raise funds for the UK Rituximab Trial.
This is inspired by a £1000 donation to the UK Rituximab Treatment Trial JustGiving page and the Let's Do It for ME team have come up with an idea to help raise awareness and funds for this important biomedical research into understanding and finding effective treatments for ME. The aim of the Matrix project is to help raise as much as possible of the £350,000 required to fund this trial by inviting 100 pledges to raise or donate £1000 each.
Invest in ME will coordinate the fundraising for this trial.
The charity has already invited other charities and organisations to support in funding this trial. Everyone is invited to participate.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
- Head Shaving
- Sleepathon
- Coffee Morning/Afternoon
- Collect everyones small change
- Sponsored events - such as sponsored silence, dog-walking/sitting, not using electrical devices for a weekend (no tv, laptop, mobile phone etc), marathons etc
- A supermarket or Store Collection
- A Group Sponsored Walk (can be any distance)
- Holding a craft stall or car boot sale
Invest in Me will help promote your fundraising event if you contact them;
Alternatively you could raise funds for free;
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
You can download sponsorship forms for any of your events here
AND
There are badges, mugs, t-shirts, wrist bands and bracelets, car bumper stickers, information videos and various posters available.
To enquire about receiving printed copies of any Invest in M.E.'s leaflets (or any other information for your fundraiser) contact them - click here
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Whatever you can do - no matter how big or small, will help us to make a difference.
Thank you
x~X~x
21 February 2014
& THE TOTALS IN....
I want to start with a Big
thanks to all those of you who've purchased “Runnin On Empty” & “ Can You See
ME” items so far, where all profit made has
just been donated online to
Invest In ME, 30 t-shirts, 9 hoodies, 7 tote bags & 2
mugs later plus a £20 donation thrown in
from a very kind friend, & You lot have raised £202.08 HORAAAAAAY J
Also a big thankyou to
everyone’s whose shared the store link and pictures. Don’t forget to upload
your own pictures to the site with your purchases. For those not sure how to do
this: Just click on the store link, http://wwwmamachill.dizzyjam.com/
click on any item and then scroll down and
at the bottom of the page you’ll see pictures of those who’ve already uploaded
including me & my ugly mug :o and
you’ll see an upload button…..but if you need help, i can always just nick your pic off facebook and do it for you, as I have for a few already, so just holla.
There is also a “comment”
button here where you can say what you think about the item..did you like
it?...was it good quality….did you like the design? Etc leaving comments can
help other people decide wether to purchase something or not so along with the
photos it’s a really big help.
DRUMROLL…….. On the 1st
March I will be adding a brand new M.E design I’ve been working on called “One
Stupid Dot” to go with the other three M.E ranges, so pencil that on your
calendar, write it on your forehead, or better still write it on your partners
forehead you’ll see it better, but remember to check it out on the 1st
March. All designs will be a permanent
feature in the store and all profit from all four ranges will be donated to
Invest In ME. So please continue to
purchase, share, tell ya friends etc…….
The idea is to change up
designs from time to time, so it keeps it fresh, gives you something new to
wear, something you hopefully enjoy wearing while knowing that you are helping
to raise funds and also awareness. I’ve already been stopped a couple of times
in the café where I live whilst wearing my “Runnin On Empty” T-shirt and asked
where they can be purchased, & getting into chatter I was also able to tell
them about M.E and why I used that design, but how it’s a design that’s open to
anyone.
So its been good all round
and I hope that if…please note I said “IF” we get a good summer....or any summer, wearing the items
out without a jacket might stir up even
more interest, so please keep your support rolling, its greatly appreciated.
And as always a special
thankyou goes to the “Lets Do It For ME” team
who have been awesome in promoting and supporting this project.
I will keep everyone posted.
Stay Blessed
Back Before Elvis
Stacy A.K.A Mama Chill :) XXX
17 February 2014
Mark Webster's Bath Half Marathon
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| Mark with mum Isabel Webster |
Both of them have a generosity of spirit that is not bounded at all by the challenges they face on a daily basis. If ever there were two reasons to put hard earned cash into biomedical research into the causes of ME, these two should stand up... But they would be the first to speak out for their many friends and thousands more who they have never met who have to struggle with the varied and cruel effects of this neurological condition as well as dealing with the ignorance and antipathy often shown by some health professionals and members of the public.
 | |
| Nadine and Issy at Mark & Beccy's Wedding in 2010 |
As for the run itself, if you are in Bath on the first Sunday in March you'll probably see me at the back running behind the bloke carrying a fridge and just in front of the lady running on her hands. I'm not the fittest person in the world and I'm carrying enough spare tyres to keep Kwik Fit in business so it will be a challenge to complete but what ever place I finish in, 'll be proudly wearing an 'Invest in ME' tshirt and thinking about my Mum, Nadine and the many others who run their own half marathon each day without even leaving the house.
Thanks for reading,
Mark x
Mark's Bath Half Marathon 2014 Fundraising Page on JustGiving
"Daddy is running for my Gran and Invest in M.E."
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| Mark's biggest supporter, his son Finn |
************
Let's do it for ME! is a community campaign in support of the work of independent UK charity Invest in ME (Research) and raises 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 people with ME. They are driving the agenda of scientific biomedical research into diagnostic tests and treatments for myalgic encephomyelitis in collaboration with international researchers of world renown - 2014 promises be an exciting year for progress in M.E. research and we can all help.
Click here for current and planned research projects. Thank-you for your support.
Let's do it for ME!
ldifme.org
Invest in ME (Research)ldifme.org
investinme.org
Invest in ME International Biomedical Research Conference (IIMEC)
investinme.eu
16 February 2014
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 *
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