28 October 2011

LDIFME Shop Now Open – with free delivery 29th - 30th October!

We declare the LDIFME Shop is now open! The LDIFME shop provides a range of products for both awareness and fundraising. All proceeds go to Invest in ME.

For each accessory (mugs, badges etc) and every item of kid's clothing purchased, £1 goes to Invest in ME. For each item of adult clothing purchased £2 goes to Invest in ME. If you wish to donate more than this amount, you can do so here – we have added these details to the product description for every item. 




We plan to add further items to the shop to include the Invest in ME logo, but are waiting for the use of the logo to be approved by Spreadshirt (as it is Copyrighted). You may wish to wait until these items are available to place your order. Unfortunately we cannot give a date by which they will be made available, as this is out of our hands. 

If you place your order 29th - 30th October you will qualify for free shipping. Use the voucher code WITCHINGHOUR at check out to apply this discount.

The best way to find out more is to visit the shop.



*The Let's do it for ME! awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME and towards the UK research centre. See this campaign highlighted on the Invest in ME website here.

26 October 2011

Amy's Sponsored Screen-Free Weekend!!

Last year, Amy kindly raised funds for Invest in ME with a sponsored silence. This year, she is going screen-free for a whole weekend – very valiant for someone who largely relies on screen technology for contact with the world outside her home. 




Amy says:

Hiya, my name's Amy, I'm 29 years old and I have been ill for 8 years will a severe illness called 'Myalgic Encephalomyelitis' or M.E. for short. M.E. has robbed me of so much of my life and affected me so greatly that I am now housebound and often bedbound with severe symptoms.

UK charity Invest in ME are planning to set up a specialist treatment and research centre for M.E. suffers here in the U.K. which could treat patients and offers us real hope, so myself and many of my friends are trying to help them raise as much money as possible to make this happen.

Because I'm so ill, I'm limited by what I can do to raise money, no marathons or bungee jumps for me sadly!! So instead I have decided to do a screen free weekend from the 11th to the 13th of November. That will be 48 hours with no TV, no pc and no internet!! Which for an internet addict like me, who lives alone, will be really hard, but totally worth it!

It would be really appreciated if you could sponsor me, and also let your friends know too.”

Amy also bravely shared the full account of her life since contracting myalgic encephalomyelitis for October's Monthly Story on Becoming Visible 4ME - click here to read more about Amy.

Amy's fundraising page is here on Everyclick.


Thank you so much Amy and her sponsors for your support!


Let's do it for ME!

UPDATE:  Amy raised £764 on her Everyclick page - 153% of her target! 
                    Thanks so much to Amy and all her generous sponsors!!

Click here to read about Annabel Schleutker's Screen-Free Weekend.




*This awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME towards the UK Centre. See this campaign highlighted on the Invest in ME website here.

10 October 2011

Carole and Clive's Morrisons Collection - 30/9/11

Clive Carrick, Richard Hutton (Berwick Upon Tweed Store Manager), and Carole Carrick.


On the 30th of September Carole and Clive Carrick kindly organised a Morrisons collection in support of Invest in ME and Let's do it for ME! They raised £265.94 on the day for the biomedical research centre, and have another collection planned for the 17th of December. 

We are also pleased they have shared this photo of the event with us, which has been entered into our Show Us Your Best Side photo competition - an initiative aimed to generate photos for our website, which we hope will increase awareness of ME, the need for biomedical research, and our campaign for a centre. 

Carole has also kindly done the following write-up of the days events.

"Clive and I arranged to do our first collection for Invest in ME today at Morrisons Supermarket in Berwick Upon Tweed, Northumberland.

We arrived at 10am at the Morrison's store and set up the stall fairly quickly with a wonderful array of posters, leaflets and information provided to us by Invest in ME.

No sooner were the collection boxes in our hands, we were pounced on by folk wanting to pop their hard earned cash in and it never stopped for the five and a half hours we were there. Everyone was extremely friendly and generous...resulting in a great total of £265.94 towards Invest in ME's Biomedical Centre as part of the Let's Do It For ME campaign.

During our collection the Store Manager Richard Hutton kindly joined us for a photograph and was only too happy to hold one of the 'I Support Let's Do It For ME' posters. Throughout the day we had over twenty people comment on the fact they either had ME themselves, had a relative or close friend with ME or knew a neighbour, work colleague or student with ME. We handed out a great deal of information to not only these people but several others who had a genuine interest in learning something about ME.

Clive and I used to do charity collections for our local ME group sometimes once a week, but more often once a month. This was around two years ago but for other health reasons I had to stop. I mention this because we would regularly have around 3 people approach us on each collection stating that they had ME or knew someone who did.

Now something has definately shifted in this equation...either folk are a lot less reluctant to talk about ME and feel more comfortable telling a complete stranger about this misunderstood illness that they suffer from or know a friend has or there are a lot more people with ME out there two years on! As I said there were over twenty people...that told us...who knows how many more remained silent!

I actually made a list of these people.

There was one young girl who said her mother had contracted ME 9 years ago after the birth of her second child. She had a pulmonary embolism on her lung and was very ill and never really recovered. The girl said that she can still remember how bad her mum was as she, as a child, had to help with the care of her baby brother as her mother was very sick and couldn't manage.

There was a man in his late fifties who said he'd had ME 'a very long time' and couldn't 'imagine ever being well again'.

There was a gentleman in his 90's who has had ME for over 45 years and he manages to control it with supplements, although he had just recovered from a major relapse which lasted over a year six weeks ago. he had been bedbound all that time.

There was an elderly couple who were elated to see us collecting for ME and said they had never seen anyone collecting before. Her daughter has had ME for 16 years and the lady got quite emotional right there in the store and set me off with a few tears to be honest!

There was a woman who's sister had been diagnosed with ME five years ago but just in the past six months had been found to have MS.

There was a lady whose sister has ME and lives in New Zealand...she said she get's quite good medical care out there and it seems to be much better understood.

There was a woman in her thirties who said her father has had ME for many years.

There were several people who had 'worked with' and been support workers or teachers to adults and children with ME.

There was a woman who'd had ME for 8 years but felt that she was much better now and able to manage the illness.

There was a woman who had a friend who'd had ME for many years.

There was a woman whose daughter had just been diagnosed with ME six months ago at the clinic in Edinburgh...I asked if they had offered her any good advice or care and she stated that they told her push herself and not to give in to ME...I advised her that this was completely the wrong thing to do and urged her to visit the Invest in ME website to get more acurate advice on how to manage ME.

There was woman who's friend has had ME for over twenty years and is very severely affected.

There was a man who said his sister had ME.

There were numerous people who stated that a neighbour or a person where they work had ME.

There were too many of these people, this really opened my eyes to the fact that ME is becoming more prevalent...it actually scared me more than ever before!

But...All in all...today was a good day and the first of several collections we have planned.

Our next one is 17th December in Asda Store Berwick...I think I'll have to dress Clive as a Santa and maybe I can be his little (well large) helper! haha!

Carole x"



A big thank you to Carole, Clive, and the the manager of the Berwick Upon Tweed branch of Morrisons, Richard Hutton.

Carol has now produced an easy guide to doing a collection for Invest in ME in supermarkets or other stores.   

If you would like to plan a collection in your local supermarket, or have other fund-raising ideas you would like to organise contact us at fundraising4me@gmail.com


 

8 October 2011

World Premiere of Voices from the Shadows

Today, Saturday 8th October 2011, sees the world premiere of Voices from the Shadows - a ground-breaking documentary film about ME at Mill Valley Film Festival in California.

By special arrangement with Mill Valley and in cooperation with MUBA, those in North America can watch the film on-line, free of charge, until 30th October, but you will not be able to download it for later viewing. Two UK screenings in Norwich and London in December have been arranged by Invest in ME. Please click here for details.

We believe that viewers may find this film intensely moving, compelling and also informative, but please be warned that it may be tough to watch if you have severe ME yourself as it brings home the heart-rending reality of the illness.

Please also note that it is not suitable for viewing by children with ME.

The film has been made by the brother and mother of a severe ME sufferer. Josh Biggs is a professional freelance editor and cameraman. Natalie Boulton was an artist/teacher and is a full time carer for her daughter who has been ill for over 20 years. Both are first-time directors and producers. The music for the film was written and kindly donated by Emmy-nominated composer David Poore. 


"Voices from the Shadows is the most important and significant film on pediatric ME that has ever been produced" – Prof. Leonard Jason.

The film foregrounds the riveting stories of several British families confronting what must be everyone's worst nightmare: a loved one suffering a life-altering illness that leaves him or her bedridden and in constant pain, with no apparent cure.

But what if the medical establishment made the situation worse instead of better? Such are the heartbreaking circumstances of the under-reported controversy surrounding ME (myalgic encephalomyelitis), aka chronic fatigue syndrome.

First-hand accounts from patients, caretakers, and medical experts paint a shockingly confused state of affairs—and underscore the urgency and frustration around this issue. A call to action for anyone who cares about the health and well-being of their community, this powerful film is equally a tribute to those whose voices must be heard
.”
—Atissa Manshouri

Presented in association with UN Association Film Festival

There will be a panel discussion following the screening with invited guests:

David Tuller, lecturer, Graduate School of Journalism at UC Berkeley, frequent contributor to The New York Times.

Natalie Boulton, filmmaker, Voices from the Shadows
Dr. Jose Montoya, associate professor Stanford School of Medicine

Screening: Sat. Oct 8th, 2011 @ 2:00 PM - Smith Rafael Film Center, San Rafael, CA.

Running time: 63
Country: UK
Category: DOCS
Directed by: Natalie Boulton and Josh Biggs
Directors/Producers/Editors: Natalie Boulton, Josh Biggs
Cinematographer: Josh Biggs

From film festival website.


UPDATE

Voices from the Shadows is now available for those in USA and Canada to view online on MUBI and for those in UK/Europe, Australia and New Zealand to buy on DVD.  You can watch the trailer here.

To raise awareness, you could send these links to your MP or political representatives, your doctors and medical team, any other professionals you have personal contact with in education or social services, as well as local and national media.

Voices from Shadows is a development from the highly-recommended book Lost Voices.

7 October 2011

Photo Competition Update

Thank you to all those who have sent us photos to be included in the LDIFME album, as part of our Show Us Your Best Side awareness event and photo competition, so far.

We now have signs available for use in groups and at fund-raising events, and which include the Invest in ME logo - highlighting that all funds raised go directly to the charity.

We have received some lovely photos, but need many more - so please don't be shy!

Send your photos in to us at fundraising4me@gmail.com, along with your name, age (if under 16) and any other details you are happy for us to share publicly.

If you are under 16 please seek permission from a parent or guardian before you send in your photo(s) and provide us with their contact details (Name, Address, Telephone No. and Email Address) as we cannot use your photo(s) without this permission.

And don't forget there's a prize in it for the most inspired photo! For the full details of our competition, see our previous post here.











*The Let's do it for ME! awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME towards the UK Centre. See this campaign highlighted on the Invest in ME website here.

6 October 2011

Joyce's 50th Birthday Gift for ME!

 Joyce says ..

"I hit my half century this October 7th! The big 5-0!

Scented hankies? Bubble bath? Not this time please! Here's why: I'm celebrating my big milestone birthday by asking people to donate whatever they're able to 'Invest in ME', an independent UK charity raising funds for real bio-medical research into this devastating illness.

M.E. has robbed me of huge chunks of my life. M.E. affects the lives of 250,000 others in the UK alone. 'Invest in ME' hopes to open a UK Biomedical Research and Examination Centre for M.E. in Norwich, UK.

This will mean hope for effective treatment and an eventual cure for this disease. This is my dream and my prayer for all my fellow sufferers.

I was diagnosed with M.E. in 2006 after becoming very ill after the flu jab the previous year. Since becoming severely ill with giardiasis while working in Bolivia in the early 90s, I'd been ill in a 'boom and bust' pattern for more than a decade. I always tried to push myself beyond my limits working as a Methodist Minister. I'd wrongly put my exhaustion, pain and sickness down to my type 1 diabetes, constant viral infections and three bouts of shingles!

My collapse on 24th October 2005, on my way to lead family worship at one church where I was minister, finally convinced doctors that something much more serious was happening in my body. Over 6 months later after endless tests, M.E. was diagnosed: basically, a chronic neurological and immune illness that is relapsing-remitting like MS. After nearly four decades as an internationally recognized and categorized disabling neurological disorder, ME/CFS is still one of the most underfunded, maligned, miscategorized life-altering illnesses of our time.

I was largely bedbound at that time and now still housebound at times. I'm thankful that I have "better" days along with the really bad days now. Strict pacing of energy can help, sometimes, but not cure. M.E. means my body can't recharge its batteries after the least effort of muscles or concentration. This leads to disabling symptoms that make it terribly difficult to function a lot of the time. Made worse by my dodgy immune system imploding at any passing virus that shows its face!

But M.E. can never destroy my wacky sense of humour! It can't have who I am inside! I've so very much to be thankful for, to laugh about and to share. Can we make the big £5-0-0 to celebrate my big 5-0? Let's do it for ME!

Thanks so much to all my lovely friends, family, followers and well-wishers everywhere! I love you! XXX
"


Happy 50th Birthday Joyce!  Many thanks for your wonderful birthday gift and to all those who are so generously helping you to celebrate in style!

Joyce also has a blog and you can follow her on Twitter - for links and to help Joyce achieve her birthday wish, see her fundraising page here on Everyclick.


 


*The Let's do it for ME! awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME towards the UK Centre. See this campaign highlighted on the Invest in ME website here.