Matchstick Campaign

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Great news this week for the Invest in ME Matchstick Campaign for Awareness of ME (Myalgic Encephalomyelitis). Joan McParland, founder of the charity Hope 4 ME & Fibro Northern Ireland, wrote:

“Thank you to Invest in ME for supplying Matchstick leaflets which are being included in each of our info packs being distributed to all 73 branches of Boots Pharmacies in Northern Ireland this week. All content in the packs had to be pre-checked by the area manager who has kindly arranged that Boots own delivery vans will distribute from our local store, saving us a fortune on postage.”

This resulted from one phone call from a pharmacist at Boots asking Joan for information to help a parent of a child with ME. She added, “We may not have educated the NI GPs yet but this project will go a long way in educating the pharmacists!”

Art has the power to inspire, to evoke reflection, to see things differently, to force change. An image can capture a thousand words and express views and feelings and convey a sentiment often far better than several pages of words.

12373318_1690040084540736_4805306631824709276_n Wolfgang Stiller, an award-winning German artist who currently lives and works in Berlin, kindly allowed Invest in ME (Research) to use his images for the Matchstick ME Awareness campaign, which was launched in May 2015.

Janet Smart and the Let’s Do It for ME team designed the posters, adding a slogan for each image and, in turn, Invest in ME developed a brochure featuring these images and describing what the charity and supporters are doing.

So far, hundreds of Matchstick brochures have been distributed across the UK to GPs, hospitals, universities, patients and carers.

The brochures have been included in the Invest in ME information packs, Christmas card and wristband postings.

They are displayed in many GP practices and healthcare outlets in UK and Europe.

A lovely story from a family that ordered some Matchstick brochures is typical of the many responses Invest in ME have had regarding the impact of the brochures –

“Hi just thought I would share with you, my daughter, who has M.E lost her footing on the stairs on Saturday and landed awkwardly at the bottom.

She was in soo much pain and her ankle looked broken.

We rang for an ambulance, when the paramedics came – they were concerned about the amount of pain she was in I told them she had M.E and my daughter said “give her an Invest in M.E Matchstick brochure”, which I did together with your other leaflet.

As they worked on my daughter they read the leaflets and said “we need some of these for our ambulance depot – have you any more?”

So I gave them some to take.

It was one of the first times we have been to hospital with out silly comments being made e.g. you don’t look like a person with M.E was one of the many comments in the past!

The paramedics really made sure all the staff attending knew she had M.E and about all the intolerances etc. she suffers.

So a Big thanks for your literature it certainly made a difference.”

We are all very grateful for Wolfgang Stiller’s support and to everyone supporting the Matchstick Campaign by distributing and displaying the posters and brochures, which are available from Invest in ME at http://www.investinme.org/matchsticks.htm

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A Bloke Called Skopje

“It’s not every day you get to interview a bloke called Skopje…………” wrote Stacy Hart in her weekly column at the Watford Observer. She went on ..

This week I’ve brought my M.E and local section together for one M.E-tastic Supersection because I had the absolute pleasure of interviewing the local multi-talented human being that is Skopje , Accoustic folk artist & photographer who like me also suffers with Myalgic Encephalomyelitis (M.E). I usually find there’s a story behind how people adopt their names, and I enjoy hearing them so that’s the question I started with……and he didn’t disappoint :

SKOPJE: At 17 all my mates were buying cars so the hopes of a lads holiday went out of the window. I was working as an assistant film editor at Filmfair at the time, the childrens animation company that bought us gems like The Wombles & Paddinton etc….

A new girl offered me to go inter- railing with her and her friend and I agreed but within an hour of arriving in Rome the girls went off leaving me by myself and then hooked up with two Canadian guys who they bought back to the room we all shared. It was an uncomfortable situation and the next morning we literally tore the Map and guide book in half and went our separate ways.

I had always wanted to go to the Greek islands, so I set off, terrified, shy, young, it was my first holiday, but there was no way I was going back to the Uk with my tail between my legs. I got down to the very bottom of Italy close to midnight, and the boat was going in ten minutes….. There were two dotted lines on the map that left Italy, I presumed they both went to Greece, but the girls had that part of the map….so I just got on the boat, and hoped for the best.

However the boat ended up arriving in a desolate mining town in communist Yugoslavia, on a bank holiday and I was left mightily fearful, I only had Italian lira on me so I hitchhiked for a day and a half, living only on a crust of bread and some off yoghurt drink that someone gave me. Eventually I arrived at a huge city where I was able to catch the train to Greece. But the lone journey changed me mentally, all of my worst fears of travelling had happened on day three, but I’d got through it, and so I ended up losing all of my fear…The name of that town was Skopje.

STACY: So how did you get into Music?

SKOPJE: I started writing and recording songs at 13 on a boombox with dual tape decks, I would get albums out of the Library by chance based purely on their picture covers, knowing nothing of the music, and the two albums that shaped me were Brian eno, “Ambient 4 on land” and Sparks “No 1 in heaven” synth album.

I was also into Thin Lizzy, Fleetwood mac and Suzi quarto via my dad’s vinyl collection and heavily into Abba which I still love to this day.

STACY: And the best thing you’ve achieved musically?

SKOPJE: It was five years after getting M.E, I hadn’t been playing due to poor health. I just happened to leave a comment on Slaughtered Lambs Myspace site. It was one of the most prestigious acoustic venues at the time. They seemingly checked out my music and offered me a gig. I was so ill, but it became my focus. M.E robs you of everything and leaves you clinging onto any chance of tasting normality even if it’s for a short while. I did the gig and got back into music again which changed my life. It just means I suffer the consequences afterwards, as others who suffer it will know.

STACY: I’m absolutely loving your photography, Your photos have life & depth to them, so what’s with Skoptagraph?

SKOPJE: Thanks, I’ve always done photography since childhood. I was accepted on a film or photography placement youth training scheme back in the 80’s….and I chose film. So it kind of feels like I’m going back to the start of my life again, kind of a re-boot. I still have a huge amount to learn which I’m doing by watching youtube videos at the moment.

I want to do something special with photography. Same as music, I share the view that technical perfection is unimportant, but I want to move people somehow. Ideas are always better than the immaculate. But I have a long way to go.

STACY: I know this next question is extremely difficult for you because you don’t like talking about it, so firstly thank-you for agreeing to answer it….M.E?

SKOPJE: M.E  is something I do my best to ignore even though that’s physically impossible, it is something of a huge frustration. I intended on spending the festive period learning flash photography/portraits and also building a website. Instead all I was able to do was lay flat on my back on the floor in a house on my own for seven days.  To say it’s tough having to live with a chronic physical illness that blights every decision is an understatement. I often have ideas but not the physical energy to get the camera out…..Yes, the word I would use is frustration.

To check out skopje’s music : https://soundcloud.com/skopjemusic

Photography: https://www.facebook.com/skoptagraph/

Stacy added ..

Last but certainly not least I’d like to give a  big shout out of thanks to local company Galderma in Clarendon road.   I was contacted by Vyvyan Weltiner to say that during the year the company often replace bits of office equipment, they sell the old equipment on and at the end of the year they donate  the money made to charity and having followed my Watford Observer column and read about the M.E Charity I support , this year they have chosen to split it between Invest In ME for those suffering with Myagic Encephalomelitis  (M.E)  &  also The MS Society for those suffering with Multiple Sclerosis each receiving £750 .

I’m so thankful & absolutely thrilled, as I’ve stated in past columns I’m so extremely proud of Invest In ME, because as a charity run by a small number of volunteers that has no salaries they really are leading the way. They believe every penny should go where it’s meant to go & that’s not in individuals pockets. This, I believe is how all charities should run, but that’s a whole other column. £750 is a huge amount and every penny donated really does help to make e a difference, you can see for yourselves just what this small unsalaried charity have achieved and are achieving.

(The above was originally posted at http://www.watfordobserver.co.uk/news/columnist/14191335.Runnin_On_Empty__A_Bloke_Called_Skopje/?ref=fbshr
and is reprinted here with kind permission from Stacy Hart and Skopje.
)

Skopje
Skopje

Ash and Rob’s Triathlon for Invest in ME

Ashley Curtis wrote, “Rob and I are going to be taking part in a Triathlon (1500M Swim, 40KM Bike and 10KM Run) for a terrible illness that affects millions. I have seen severe M.E firsthand and can only imagine how difficult and frustrating it must be to not be able to do basic tasks many of us take for granted. Talking to Kelly (Sister in Law) who suffers from severe M.E, I know she would love to take part in this event and would most likely be dragging me around! If everyone could just donate what they can and share this page with family and friends, then this dreadful illness could be cured much sooner!”

See more at https://www.justgiving.com/ashley-curtis-94/

To donate to Ash and Rob’s Triathlon by text ..
Text Code: ARTR90 + amount to 70070
Text example: ARTR90 £5 to 70070

 
Ash and Rob Triathlon

Thank you for your support!

Walk for ME 2016

Walk for ME 2016 has launched in preparation for ME Awareness Week, which runs from 9th to 15th May. Sarah-Louise Jordan has created the event page on Facebook and Luke Remnant has a Team Page for Invest in ME on JustGiving. Tania Brown has set up the event page on Facebook for Team Walk for ME Isle of Man 2016. Walk for ME is in aid of two charities so please be sure to select Invest in ME (here on JustGiving) if you want to create your own Walk for ME page to support our cause here at Let’s Do It for ME.
 
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If you’re new to our site, Let’s Do It for ME is a community campaign run by patients in support of the work of the charity Invest in ME (Research), and raising funds for their biomedical research strategy for myalgic encephalomyelitis (ME). Please browse our site for various ways to help raise awareness and funds. Our summary of 2015 is here. We begin the year at £634k raised so far for the Invest in ME Research on the role of infection and the immune system (currently gut microbiome and B-cells/ rituximab). In June 2016, Invest in ME hold their 11th (now world-renowned) international biomedical research conference events since they set up as a charity in 2006, forging a path for progress in research for tests and treatments for this disease. Invest in ME is run entirely by dedicated volunteers, with no funds spent on salaries or unnecessary overheads. You can sign up to receive the free Invest in ME e-newsletter and the Let’s Do It for ME blog for updates on the research projects and ways to help throughout the year.

If you would like to join Invest in ME supporters with a walk, run, swim, wheelchair push, walkies with your four-legged friends, through Walk for ME 2016, then click here for more information and please share the link widely. Thank you for your support and to everyone at Team Walk for ME. Please also browse our site for more ways to help raise awareness.

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15% OFF Our Awareness Shops

Let’s Do It for ME team members run several online shops with all seller profit direct to Invest in ME Research Funds. Some of these shops are on Spreadshirt and the range includes clothes, mugs, totes, badges, and our Let’s Do It for ME Bear. Spreadshirt is offering 15% off their entire range in their first promotion of the year.

* 15% off your entire order
* From 8th to 12th January 2016
* Coupon Code: ALLNEW15

To get in gear to support our cause for Invest in ME Charity with 15% off, please visit the following shops on Spreadshirt …

Let’s Do It for ME (run by Jan Laverick)

Let’s Do It for ME – Design Your Own (run by Jan Laverick)

ME Awareness (run by Carmel Cunningham)

Make ME (run by Jon Watson)

The Big Sleep for ME (run by Julia Cottam)

 

Rachel Monkman pictured before her 2015 Head Shave for Invest in ME
Rachel Monkman pictured before her 2015 Head Shave for Invest in ME