22 April 2014

Hey everyone, hope you’re all well and truly stuffed with chocolate eggs whether they be vegetarian, gluten free, dairy free….just ,as long as they weren’t chocolate free? 
 
Thanx to all your purchases,  profit  this month totalled £126.19  & has just been donated to Invest In ME . Advertising and encouraging people to continue to purchase is ongoing and I hope you will continue to support  it and tell  others.     The “Runnin On Empty” range has far been the most popular , and I think this is due to the fact it can be worn by anyone and everyone regardless of illness and  yet it can still get the message across, although "One Stupid Dot" is doing well.

As some of you know My dad surprised me recently by showing up wearing one that he’d purchased from the store to show support.   Now, he doesn’t usually like wearing T-shirts , which made  me appreciate his efforts even more, plus my step-mum said that he’d been doing a sales job on  visitors they’d had to the house that week, go dad 

I also had an email from a lady just the other day who has M.E  and whose carer had taken them shopping, She was also were wearing her “Runnin On Empty”  T-shirt and said  a number of people commented on it, which made her feel good because she was able to say it was to do with M.E & the profit from sales went to an M.E charity.

She said  she usually found nobody wanted to hear about M.E & like most of us she felt invisible, but wearing the T-shirt  and getting the comments made her feel  more visible and it was almost as if the T-shirt  connected her with people again as  she found they actually seemed interested  to hear what she had to say, which in turn gave her a much needed  lift. I also pointed out to her that she’d done a great job of helping to raise awareness not only by purchasing in the first place but by wearing it out where it was going to be seen and takin every opportunity that arose to explain the reason behind it.

So please keep your emails and your stories coming I love reading them & lets keep sales Rolling. http://wwwmamachill.dizzyjam.com/
                                                 
                                                 Til next month..

                                                     Big Thanx 
                                                     Stacy XXX

20 April 2014

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!
Invest in ME (Research)
Invest in ME International Biomedical Research Conference (IIMEC)
IiME/UCL/UK rituximab trial 





19 April 2014

Stephen's Big Marathon

  Stephen’s Big Marathon
         Running the London Marathon 2014 for Invest in ME
                                               
                                            

Well the dust has settled so it’s time to reflect on my attempt to run the London Marathon for Invest in M.E.

I have been trying for a number of years to enter this event but I wouldn’t sign up to the bigger charities and that reduced my chances of being selected and so I had been unsuccessful in gaining an entry place for many years. That was until October 2013 when my acceptance letter dropped through the letter box at Chez-Cox.

After breaking the news to the current Mrs Cox (she’ll love that!) , she agreed that I would run in support of Invest in M.E. I say ‘agreed’ but really it was never going to be any other charity and ‘agree’ also implies that I had any say in it. The aim was to raise £1000 and a page was set up on the ‘Just-Giving’ website to do just that.  


Considering myself relatively fit (as in healthy) for someone the wrong side of 54, I was sure it would be no problem. I am used to endurance events having cycled John O’Groats to Lands End, Calais to the Med and the length of the Pyrenees and still play football regularly.  So with this in mind I started with a plan to go running twice a week from Christmas and build up by adding one extra mile  each week, that way I reckoned I would get up to over 20 by April.

My first run was 5 miles, and over the next month or so I managed to increase it to running 10 miles at each training session. However I wasn’t able to go out as often as I would have liked so I wasn’t sure if my plan was going to be enough. At this point I decided I needed to increase by 2 miles each week. This was during what was one of the wettest Jan/Feb in memory and it was a while until I actually ran when it wasn’t raining.

The other thing I found hard was the boredom. Running to me was really boring, even with a radio/headphones. My route by now was a loop that took me along the River Taff in Cardiff and down to the Barrage in Cardiff Bay and then back on the other side of the river. At least this way I didn’t run too much on the same, boring, bit of road.




A key milestone was getting over 13 miles (a half marathon) and then over 18 miles (over 2/3rds of a marathon). In the end the most I did was 22 miles and by the end of March this was twice a week.
At that point, the best advice I read was that you should ease off in the last few weeks. So that was what I did. My thinking was well I know I can do 22 so even if I have to walk the last bit, I will finish.

Throughout this time there had been a steady flow of people making donations to the just-giving webpage. Having booked my hotel, final details came through for the registration process, so all was set for the big day. The forecast at the start of the final week indicated that it was going to be a dry day so that was another thing in my favour.

So on Saturday 12th April I drove up to London and took the tube to the registration exhibition. Having picked up my number I realised that this was it, there wasn’t an option to back out. For a start the donations had gone well past the £1000 target but also no-one would go against Rosie now would they! I returned to the hotel and had an early meal.


 

There had been a real flurry of donations in the last few days so I was chuffed that it had now surpassed the £1600 mark. Mrs C was sure it could get up to  £2k and for some stupid reason I doubted her. (When will I learn!)

I awoke at 6.00 to get up and have breakfast. This didn’t quite go to plan as the chef had not turned up. I contemplated making my own breakfast when thankfully another kitchen employee arrived and soon I was able to tuck into my porridge. After getting my kit ready I walked the short distance to the tube and in what seemed like no time but was in fact an hour I was walking out of Blackheath Station towards the start area. It was about 9:15 but already it was really warm. There wasn’t a cloud in the sky and very little breeze. I dropped off my belongings to the lorry that would hopefully take them to the finish area and walked towards the start. It turned out that I would not be starting next to Mia Farrow et al (sorry Mo Farah) rather I was at the back of the blue start area. Most of the people around me were kitted out in running vest and shorts and I became aware that I was going to feel a little warm.



There were loads of charities represented, the usual biggies, but not one for M.E. that I saw. That did actually give me a bit of a lift as I like a challenge (I am married to Rosie after all!) so it was me against the rest of them, all 38,000!

I set my GPS watch ready for 10.00 and the countdown started 10,9……3,2,1 and that was it we were off.  Except we weren’t. We were actually going nowhere, such are the sheer numbers doing this. Eventually we started to walk then jog a little and finally after nearly 10 minutes we crossed the start line. The crowd in the grandstand gave everyone a huge cheer and so I set off with one thought in my mind – I must finish. Actually I had a few thoughts,  I want to get under 4 hours, I don’t want to walk and I don’t want to stop, I wonder if anyone is watching out for me on TV or the route.

The first few miles went slowly and I soon realised that I had little choice but to run at the pace of the pack. If I wanted to go faster I would have to do some weaving in and out of the other runners. Some people were doing this and it annoyed me a lot so I thought it better not to do it. Anyway I reckoned that this strategy probably meant I would do a more steady run.

After about 3-4 miles there was a converging of the other start groups so that we were all now running on the same road. I tried to imagine what this would look like from the sky as it snaked its way through Woolwich. The noise from the crowd was amazing and most of the pubs along the way had a live band or music pumping out. A lot of the crowd were singing the theme from Batman. Now in my younger days I quite enjoyed watching Bruce Wayne beat the crap out of the Riddler etc but this was a bit annoying. Then I saw running alongside me a guy dressed as Batman and another as Robin. The thought of listening to that tune for another 20 miles gave me a little impetus to move up a few places. So I found myself behind Wally (or Waldo as I think he is called in the States) so for the next few miles a lot of the shouts were “look at that Wally!”.

At the 6 miles point we reached the Cutty Sark and the noise was quite deafening. The crowd was huge. A wheelchair athlete was right in the middle of the pack and I looked at the way he was turning the wheels, amazing strength.



There were runners of every shape, size and age and of course those in costume too. As well as Batman, Robin and Wally I saw:

Superman, Mario, The Honey Monster, a man carrying a set of golf-clubs, someone dribbling a football (he looked annoyed when I tackled him), Freddie Mercury complete with hoover (as in I Want to Break Free), a bottle of beer, a Rhino, a phone box, someone with a tiger on their back, someone with a fridge on their back and loads of others in clown outfits etc,

Practically no-one was running without their charity name but no one had lettering as big as mine and plenty of people shouted out “Go Invest in M.E”.  Some people I passed were already walking, I think the heat was getting to them. I was regretting not wearing shorts and if I hadn’t been nearing half way I would gone back for them (not).

The route winded towards Tower Bridge and across towards the half-way point. A Beefeater was perched on top of the wall at the Tower of London and I all I could think of was Rosie saying “oh my gosh how can he stand at the edge like that, you wouldn’t catch me up there”. It also made me think about people being locked in the Tower but I don’t think the two thoughts were connected (necessarilyJ).

We were running along the right hand side of the road and on the other side there were the elite athletes nearing the final 4 miles. The looked ‘done in’ to be honest but they were about an hour ahead, amazing.

We started to wind our way out into the financial sector around Canary Wharf. Probably enough money made here in an hour to properly fund some research and find a cure for ME! Life isn’t fair.

Some runners were at the side of the road, stretching their leg muscles or even lying down exhausted. I was quite pleased that I was still tootling along. However, I was nearing 17 miles now and started to feel a pain in my left hip. I started to imagine that this was going to make me stop. I knew that Rosie’s sister was hoping to stand at the side of the road at about 22 miles so I told myself to keep going until then and see how it was. The next few miles took us back along the stretch of road we had been on from Tower Bridge and so there were people coming the other way. Many were walking but the crowd was just as big and just as supportive. 

We passed Tower Bridge again and I moved over to the left had side of the road in the hope of seeing Liz. In a mile or two I saw her and she saw me too. She gave a huge cheer and I gave the thumbs up. As I passed her I realised that my hip was no longer there, no sorry!, it was there but no longer hurting J. 




I was now running further than I had run before but I could see Big Ben up ahead. I hoped it was the real Big Ben and not someone dressed up as Big Ben! This part of the course follows a bend in the River Thames so it took a while to actually get close to Big Ben but just before I did I ran through the 40 kilometre point.
From my cycling on the continent I knew 40k was equivalent to 25 miles. Wow, it sank in: I was going to finish and I was going to do it without stopping or walking. As I rounded the corner by the Houses of Parliament one of the people in front of me had been reduced to walking. Clearly his legs had gone completely to jelly and he looked really white. Fortunately two people took hold of him and they started walking together. Good for you I thought, cos I wasn’t going to stop now.





The next sign said 600 metres to the finish and I realised that I had no idea what time I was doing. I headed towards the palace and turned onto the Mall.

I could see the finish and started sprinting. No one else was and people in the grandstand were shouting and cheering as I overtook a number of runners. At this point I could hear the loudspeakers and they were saying Liverpool were beating Manchester City, what a day:  I was finishing the London Marathon and Liverpool were still top of the Premier league, brilliant!



I crossed the line and stopped my watch, the time showed 3:57. I’d done it! I’d finished and inside 4hrs.
Then you are into the finish area and they remove the timing chip and you are given your medal. It was heavier than I expected and nicely engraved. A goodie bag is handed to you. This was intriguing in that it contained an apple, a drink and an energy bar. But also a spray can of deodorant!




After a photo with my medal, I phoned home and Rosie told me all about the on-line tracking and twitter and face-book activity and also the way the funding had gone. I was really taken aback by all the interest and support and shed a tear or two sitting eating my energy bar. Not because of what I had done but because I wished it wasn’t needed.



I walked out under Admiralty Arch towards Trafalgar Square and the Tube. There were a lot of runners around, some flat out on the floor, others barely walking but all proudly wearing their medal.
It took an hour or so to get back to the hotel and I was aware of the amount of sweat and salt on my running top and face. I kept it on though - more publicity for Invest in M.E. The drive home took a couple of hours and I was welcomed by Rosie, Lucy and Thomas and a glass of Champagne.


                                                                   
 An incredible 24 hours had concluded the last few months’ of effort. Donations were still coming in and it seemed we were going to get past £2k. Once again Rosie was right…… (isn’t she always ;) ? ).                          

Thank you everyone for your support both financially and by way of encouragement. In the whole scheme of things it seems a small thing to have done when compared to the impact of this dreadful illness on people’s lives. However it’s another step towards getting proper research, better understanding and ultimately a cure.



Stephen  & Rosie Cox  
Invest in ME: http://www.investinme.org/ 


11 April 2014

Stephen's London Marathon 2014


This picture of Rosie Cox was taken in 1969 in Aviemore, before she contracted myalgic encephalomyelitis over 40 years ago.  She wrote:

I'm fairly sure I was fresh out of the pool and look suitably dishevelled but equally full of beans as was my way back then. I would never sit still .. always on the go. 1969 is key, because that was the last year I was truly healthy.

Every day of every year since then this disease has impacted my life even if I had no name for the disease until 24 years ago. The impact has been variable, with a few nice remissions, but since 1994 I have been mainly housebound.  
Living each day with this disease which drains every ounce of oomph out of me whilst (now) living with considerable daily pain, and also my attempts to employ the black arts of maquillage to feign being healthier than I ever feel .. not entirely successfully, but top marks to blusher :-) 

I add this to bring further attention to Stephen's final countdown to the BIG DAY on Sunday: London Marathon Day! If you feel you can donate something to help this worthwhile cause and put a spring in the step of an old chap so he hits the Mall, not the Wall, in fine fettle then please follow this link: http://www.justgiving.com/Stephen-Cox4

Look out for runner number 6017 in the London Marathon Sunday 13th April!  
The view Mo Farah will have at the finishing line?
A big THANK YOU to Stephen and all his sponsors from the team at Let's do it for ME!

Stephen training for the London Marathon 2014

10 April 2014

Crochet marathon for Invest in ME

Design by Hook

If living with M.E. wasn't hard enough, Seren from Design By Hook is taking it up a notch by attempting to crochet for 12 solid hours on Thursday 8th May.

Having had M.E. since 2011 Seren wants to raise funds to go towards Invest in ME for bio medical research into M.E.

In her words " M.E. has had a massive impact on my life but because of M.E. I learned to crochet so I am going to attempt to crochet for 12 hours starting at 9am and finishing at 9pm on Thursday the 8th May. I will set up a page so that pictures can be posted throughout the 12 hours and everyone can see what I have been making. Items that I make during this time will be available for sale after the event and the profits will go to Invest in M.E. Anyone who knows someone with M.E. knows that this task wont be as easy as it sounds but since I cant run, swim or do anything athletic to raise money this is my personal endurance task. So please help me raise money for Invest in ME and lets get a bit closer to finding a cure for this illness"
Crochet marathon

It's a worthwhile cause, a cure for M.E. is desperately needed and more research is essential to finding it. Follow the links to the just giving page to give your support to the well deserved Seren and please 'like' the crochet marathon Facebook page for more information and updates.


written by Jenny from MEcuperate

7 April 2014

No Mean Feat

Marcus Gwilliam
From Emma-Louise Martin: As many of you know (and have kindly sponsored), my fiancé Marcus has been doing lots of running events (the Great South Run, the Bexhill 10k, the Battle 10k, Bognor 10k, Bexhill santa run, Hastings santa run and the Eastbourne Half Marathon) all for Invest in ME.

On the 6th April came his biggest challenge yet- the Brighton Marathon. This was his first full marathon and both of us were wondering what to expect. As an ME sufferer, climbing the stairs feels like a marathon, so I would not even know where to begin with a 26.2 mile run!

In the weeks prior to the marathon, Marcus also had some extra challenges. He had to travel to Hong Kong for business and suffered a rare allergic reaction to the injections he needed to travel, and on the Tuesday before race day he suffered a back injury at work. A worrying time on its own, without having the marathon to think about!

All of a sudden the day of the marathon crept up quickly. We spent the evening before getting everything needed ready. It really is amazing to discover how much is needed for a race- it was like packing for a holiday!

As Marcus' boss made the extremely generous offer of doubling our fundraising total (a big thankyou to Rob at Edward Baden in Uckfield, East Sussex!) Marcus came up with the great idea of adding their logo to his running shirt (kindly donated by the Invest in ME team). He also set up a text donation and added the information to the shirt to raise some more funds. 


And so to race day! We set off at 5am to take our two dogs down to Marcus' parents in Bognor Regis. This allowed us to get the train into Brighton instead of the added stress of trying to park in a busy city centre. The train was full of eager runners, all eating energy boosting breakfasts and chatting about the day ahead. Luckily the train made an additional stop at Preston Park, where the race was going to start- this meant I could save extra "spoons" for the day. 


Preston Park was full of people- lots were dressed in colours of their chosen charity and Marcus and I both felt proud to be wearing our Invest in ME tshirts. It wasn't long to wait until everyone headed towards their Start pens ready for the 9:15 start. The race was started by the famous runner Paula Radcliffe and she high fived people as they ran past. I watched Marcus set off, and slowly made my way in the crowd to another viewing spot. I had an App on my phone that showed the route and I was able to track Marcus' progress each step of the way.

At mile 8 I got a text from Marcus saying he had become injured- the back injury he suffered earlier in the week had come back. He was also suffering extreme pain in his legs and foot but was determined to keep going. I was so happy to see him coming down the hill and he stopped off for a quick kiss and hug before continuing on his way. 



Later on the sun came out and it was lovely to lean on the railing feeling the warmth on my face. Marcus' injuries were getting worse and he had to have a couple of pit stops at the ambulances for treatment. Despite the pain and discomfort he was going through, I was so proud to see his symbol on my phone app getting closer to me on the seafront. It was wonderful to see him ploughing on and to hear people cheering for him. He had gained a Burger King crown (he insists he didn't have a quick bite to eat and a rest haha) and a little boy shouted to him "burger king man you are the best thing I have seen all day!" 
The seafront became very crowded towards the finish line which was quite daunting- I was worried I wouldn't be able to get through if people were moving quickly (compared to my snail's pace) but luckily the sheer volume of people meant no-one was moving fast. I met Marcus at the Finish Line- wearing his medal (which he then presented to me and let me wear), carrying his finishers pack and wrapped in a heat blanket. I cannot truly put into words how proud I am of everything he has achieved and I am so lucky to have his love and support. He has already signed up for the Hastings Half Marathon and Brighton Marathon next year! 


We have been overwhelmed by the kindness of so many people. The amount of donations has been incredible so Marcus and I would like to thank everyone who has donated, wished him luck, shared our Just Giving link and retweeted messages. Thankyou to you all!!!

Special thankyou to Edward Baden, David Sherlock Home Improvements, Jo Best and Paul Kayes for all their support xx

If you would still like to make a donation for Invest in ME and create an even bigger total: http://www.justgiving.com/Emma-Martin84

Text EMME50 £1 to 70070
Emma-Louise Martin
Kindly Sponsored by Edward Baden




6 April 2014

Matched Donation Offer!

His boss at Edward Baden has generously offered to match the amount that Marcus Gwilliam raises for his Brighton Marathon run on Sunday 6th April, so don't miss out on this kind offer if you'd like to DOUBLE the value of your donation to Invest in ME here: http://www.justgiving.com/Emma-Martin84 or by text.
Text EMME50 (£1, £2, £3, £4, £5 or £10) to 70070

Emma kindly wrote this for our blog ..

I am writing this on behalf of my fiancé Marcus Gwilliam and myself (Emma Louise Martin).

Emma Louise Martin 
After many years of feeling unwell I was diagnosed with ME in June 2013. In a way I was glad to finally find out what was wrong with me, but on the other hand it was a total shock to discover how our lives were going to change. Simple tasks like getting up and down the stairs, going for long days out, remembering things- all became that much harder. My body suffers daily with the harsh aches and pains, my stomach churns with the constant nausea feeling and the daily drained feeling feels like I'm a car running on empty. I even had to leave my beloved job- a teacher- due to not being able to work full time. Some days I cry, and I'm never sure if it is through pain or sheer frustration. Why me? Why now! Why can't I do what I used to do!?

Through every dark day there has been a shining light- my fiancé Marcus. Although he hates seeing what the ME does to me, he is always there to help me, do things for me and keep check on how I am. He is such a star and I am so lucky to be his fiancée, he means the world to me.

Marcus Gwilliam
Just prior to me becoming ill, Marcus decided to take up running, and as well as running just for fun, he began signing up for running events. We were sitting together one day and he asked if there were any charities that support ME sufferers like myself. I told him about Invest in ME - my go to source of information for all things ME related and Marcus kindly offered to do the running events for Invest in ME to help raise awareness about this often misinformed illness. We got in touch with Invest in ME who kindly sent out a pack of leaflets, tshirts and wristbands to help us.

We set up a Just Giving page - http://www.justgiving.com/Emma-Martin84 and decided to focus on "The Big One" - the Brighton Marathon. However Marcus has already run in other events- the Great South Run, the Bexhill 10k, the Battle 10k, Bognor 10k, Bexhill santa run, Hastings santa run and the Eastbourne Half Marathon all for Invest in ME. He has also rescheduled his Hastings Half marathon entry for next year's race! Due to the kindness of family, friends and even strangers we have already beaten our initial target, and last week Marcus' boss at Edward Baden in Uckfield said that after the Brighton Marathon he will DOUBLE the total amount raised!

Generous Matching Sponsorship
ME is a cruel illness that affects so many people, yet is often dismissed as "just feeling a bit tired" or even worse "lazy". I hate having ME, and want the old me back, but without a cure this makes it hard to achieve. If I have to live with ME, then it is going to join me on a journey of raising awareness and money for Invest in ME, in the hope that one day a cure will be found to help myself, my amazing friends with ME that I have met through being ill (a positive of this illness!) and the millions of sufferers around the world.

Emma Louise and Marcus

Thankyou for taking the time to read this and a massive thankyou to all the wonderful people that look after family members/friends with ME. 

ME we are coming to get you!

Love and best wishes,

Emma and Marcus xxx





Big THANKS to Emma Louise, to Marcus for all his marvellous efforts to raise awareness and funds for the cause and to his boss at Edward Baden for such a kind and generous offer of matching sponsorship.

Let's do them proud and spread the word - http://www.justgiving.com/Emma-Martin84

Thank you for your support - Let's do it for ME!


*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!
Invest in ME (Research)
Invest in ME International Biomedical Research Conference (IIMEC)
IiME/UCL/UK rituximab trial 

3 April 2014

Invest in ME Wins Direct Debit BIG Break!

You did it - Invest in ME won! We did it for Invest in ME last year - now we have done it again.   Thanks to another round of incredible efforts by patients, families and friends to vote and spread the word, supporters once again secured over 3500 votes achieving 1st place for Invest in ME in The Big Break for the second year running, winning a donation of £2,000 from Direct Debit for much-needed biomedical research into ME.  Direct Debit tweeted confirmation yesterday: 

"Big congratulations to @Invest_in_ME after winning our March Big Break for Charity vote and scooping £2k #DDBigBreak4Charity"  

Invest in ME replied:

"Thanks so much to Direct Debit for doing this for charities & helping raise funds for much needed biomedical research for ME/CFS and thanks again to everyone who voted for us – many devoting great effort and resources to raising awareness of ME/CFS". 

They also wrote on Facebook: 

"It is thanks to unpaid and passionate patients, and their families and friends who have made a difference. Thanks again to all those who took part in promoting this despite difficult personal circumstances."

Sambat Trust were very worthy winners of 2nd place and exchanged congratulations and kind messages of support with Invest in ME. 

Direct Debit shared our Thank You graphic on Facebook, posting:

"Well done to Invest in ME after winning our March Big Break for Charity vote and landing £2k. We like this pic that's been created to celebrate, very good!"

Let´s do it for ME was also complimented by Penny Alexander, who tweeted us: 

"@Letsdoit4ME so well done, I am writing a post as DD'S blogger ambassador on how to gain votes, any tips for next month's charities?"

We think our top tip is summed up in this comment by Invest in ME - have the best supporters in the world! IiME had posted on 1st April:

"There is not doubt we have the best supporters in the world. Thank You!
We'll update the web site asap and our newsletter which is being prepared for April will recognise the wonderful, positive spirit of the supporters we have.

Patients, carers and friends are making a difference.

Let's Do Research! Let's Do It For ME."


Last year, Direct Direct raised a huge £150,000 for charity as part of the Big Break Campaign.  Thanks to over 3500 votes in the month in which they nominated, Invest in ME won the top prize of £2000 and also raised much-needed and most welcome awareness.  In a press release, Mike Hutchinson, head of marketing at Bacs, had said: 

“The work that Invest in ME carries out is not only crucial for the development of better treatments for the illness, it’s also carried out for free by volunteers so it’s great to be able to support the charity and announce it as the second winner in our Big Break initiative to help 100 good causes.” 

Kathleen McCall, Chairman at Invest in ME, added:

“We’re absolutely delighted to have won the £2,000 from the Big Break campaign. On behalf of all the volunteers at Invest in ME, I would like to thank everyone who voted for us.”


Each month from March until June Direct Debit will donate £5,000 to the causes that are decided to be the most deserving. The cause that receives the highest number of votes each month will receive £2,000; the cause with the second highest number of votes will receive £1,000; and the remaining £2,000 will be divided amongst the runners up.

All involved with Invest in ME give their time for free, and all donations go towards  raising awareness of ME, improving education about ME or facilitating and funding biomedical research into ME. Invest in ME have no salaries - all work is voluntary.  Your votes for the charity in this contest have helped them continue to progress research into this disease and bring hope to all who are affected by it.    A big THANK YOU to all involved in helping Invest in ME to help us from the team at Let´s do it for ME! 


We did it for Invest in ME!

************


*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!

Invest in ME (Research)

Invest in ME International Biomedical Research Conference (IIMEC)

IiME/UCL/UK rituximab trial 

1 April 2014

Success of Our Campaign Makes News!

Daniel Vipond & Prof. Simon Carding
The following press release was published today by the University of East Anglia (UEA) and the Institute of Food Research (IFR). The crowdsourcing refers to Let´s do it for ME! Our campaign was launched by three people with severe myalgic encephalomyelitis from our homes/beds in July 2011 to raise awareness of the proposal by the charity Invest in ME to establish a centre of excellence for ME in East Anglia and to raise funds for the research. Our initial fundraising target of £100,000 fully funds the foundation research project described below and Invest in ME is now aiming to double that to enable the research strategy to develop. We are also helping Invest in ME to raise funds for a UK clinical treatment trial of rituximab via a separate fund. See our website for the wide variety of ways to help us raise awareness and these vital funds. Meanwhile, can you spot Professor LDIME Bear in the picture below keeping an eye on the work?  Huge thanks to all involved - Let´s do it for ME!


Crowdsourcing raises vital funds for ME research

Patients living with myalgic encephalomyelitis (ME) have raised £100,000 to allow new research into the misunderstood condition to take place at the Institute of Food Research and the University of East Anglia.
Under the guidance of Invest in ME, a national charity pushing for better education and high-quality biomedical research into ME, sufferers and their supporters spent two years raising the money to fund a dedicated PhD studentship at the university, thought to be the first time a community of patients has directly funded research.
Affecting an estimated 250,000 people in Britain, ME – or chronic fatigue syndrome – causes persistent exhaustion which affects everyday life and doesn’t go away with sleep or rest.
However the cause of ME is still unknown and there is a lack of dedicated services for those with the condition. The partnership between UEA, IFR and Invest in ME has been established with the aim of making strides in understanding and treating ME.
Daniel Vipond & Prof. Simon Carding
Daniel Vipond & Prof. Simon Carding
Daniel Vipond, a former undergraduate student at UEA, won the three-year scholarship which started at the end of 2013. Based at the Institute of Food Research on the Norwich Research Park and working under the supervision of Prof Simon Carding at IFR and Prof Tom Wileman at UEA, Daniel will dedicate his time investigating the possible causes of ME, laying the foundations for further research into how to then treat the condition.
He will be researching the proposed condition ‘leaky gut syndrome’ – where the immune system reacts to germs and toxins which enter the bloodstream because of a porous or ‘leaky’ bowel – thought to be a possible cause of a number of conditions.
Daniel said: “Gut health is currently a popular area of research, but as yet no research has been done in to how it might cause ME. There is existing evidence suggesting that leaky gut syndrome is a very likely influence and if my research can show a significant proportion of ME patients do have this condition, it will pave the way for further research and even potential treatments.”
Leading scientists, including Dr Ian Lipkin from the Center for Infection and Immunity at Columbia University, have stated recently that they believe there is a strong link between leaky gut syndrome and ME. But while there are plans for other organisations to investigate this link in the future, UEA, IFR and TGAC are leading the international effort to further understand the causes.
As a collaboration between UEA, IFR and the Norwich Research Park, the project will benefit from the wealth of expertise and facilities available at the world-leading cluster of organisations which also includes The Genome Analysis Centre, John Innes Centre and the Norfolk and Norwich University Hospital.
Dr Ian Gibson, former Dean of Biological Sciences at UEA and the charity’s advisor on the project said: “The formation of a research programme on ME at UEA is a recognition of the campaign by the charity Invest in ME and the growing interest in the medical world to understand this complex illness which is quite frequent in Norfolk and across the world. The approach to tackling the problem in the portals of the Norwich Research Park is most welcome and we look forward to their work being presented at the coming Invest in ME International conference in London”.
Richard Simpson from Invest in ME said this flagship project is a first for the charity: “This research is absolutely essential as ME causes significant suffering for so many people. It is a world-leading project and the team across the Norwich Research Park has the facilities available to help resolve this disease, or at least begin to contribute to the understanding.
“The funds were raised by ME patients from across the UK and globally, which shows the huge demand for better understanding and proper research for this disease, and we look forward to working with Daniel and the team over the coming three years.”
The study is currently going through ethical approval stages and will soon be recruiting ME patients under the care of immunology consultant Dr Bansal at St Helier University Hospital in Surrey.
For more information about the study, visit www.investinme.org