I swam the length of Coniston, all 5.25 miles of it!

On Saturday the 6^th September I swam the length of Coniston Water, all 5.25 miles of it, for Invest in M.E.

I’m what you would call a ‘wellie’ but I have friends with M.E.  Over the past year, my eyes have been opened to what a debilitating illness it is. I read stories of individual challenges to raise funds, such as one persons walk to the garden gate. This inspired me greatly. When I set my swimming challenge, I decided that if courageous people with M.E could challenge themselves to raise funds, I could swim the length of the lake for them.  I’m not a particularly sporty person. By trade I’m a photographer  at Sarah Loveland Photography and this is only my second year of open water swimming. Last year when I started I wasn’t very good and I could only do half a length of the pool front crawl. I built that up to complete several one mile events. At the start of this year 5.25 miles seemed impossible but I was determined. Stubborn, determined and perhaps a little but crazy!

So last Saturday at 0835, I found myself at one end of Coniston, ready to start the swim. It was a big organised event with 500 people swimming.  There were safety kayaks and support boats in the water.  I was both nervous and excited.  At the start, the water was so calm, it looked like glass.  On the swim route there were a number of feed station boats that had water and various energy drinks, gels and jelly babies on board. The first one was at 1.5 miles and then they were at one mile intervals. I told myself that all I needed to do was swim from one boat to the next, and not think of it as one huge swim.

During the swim I thought about all the lovely messages of support I had received on my Just Giving page and in all the M.E Facebook groups. I have been blown away by all the support and encouragement. This made such a difference when I was in the water. 

I’m proud to say that I completed the swim in 4 hours and 19 minutes.  I felt a bit stunned when I got out of the water. I couldn't believe I had actually done it! It was a beautiful place to swim and an amazing thing to have done. Many people have shown their support and sponsored me. I am so grateful for this.  If you would like to sponsor me,  you still can. Sponsor me here!

I’m already thinking and planning an even bigger swim for Invest in M.E next year. I’m not going to tell you what it is just yet, not until the date has been confirmed. Once again, I would like to say a massive thank you to everyone that has supported and sponsored me, I have appreciated it so much. It has made the world of difference.

 Thank you!

Sarah x

p.s. from the team at Let's do it for for ME! We would like say huge thanks to Sarah for her incredible efforts to raise awareness of myalgic encephalomyelitis and funds for Invest in ME charity, and how excited are we to hear that she is planning her next challenge for this amazing charity?!

THANK YOU Sarah and sponsors and everyone for your support!

Sponsor Sarah's Chill Swim on JustGiving

See Sarah's award winning photography and more at sarahloveland.com

100 Cares = 4 Chances to Win £1000!

JustGiving is giving away £1,000 each week until the end of August! 

If 100 cares are hit in the first week, the charity has 4 chances to win, 

so the faster the better.  Hit 100 cares quickly = More chances to win.

So let's show we care - Let's get #100cares for IiME!

Click on this link, then the Care button - you'll need to log in to JustGiving.

https://www.justgiving.com/investinm-e/

Here's the short link to copy and paste - http://bit.ly/1kcDHUS

Let's Show We Care for Invest in ME

Thank you for your support.

Let's do it for ME!

ldifme.org in support of investinme.org 

Summary of recent achievements and work in progress:  Good Things Come in 3s!

Remembering Rob

Our thoughts are with the loving family of Robert Doyle, who sadly passed away on 6th July 2013. We first published this blog in memory of Rob on 4th May 2014, when his mother Diane had said, “Sunday is going to be hard as it is the first time we have spent his birthday without him. He would have been 31”. 

Robert Doyle 4.5.1983 - 6.7.2013

Rob fell ill with myalgic encephalomyelitis (ME) around 10 years ago and became well known by the name of “Knackered”in the online ME patient community. He helped to establish and run an internet forum called People with ME. This announcement on the forum was posted on Invest in ME Facebook group last year:

It is with great sorrow that we announce the loss of one of our own. Knackered, who was instrumental in establishing and running the People with ME forum, passed away on the 6th of July 2013.

A large gathering of family and friends including three members of the forum attended his funeral on July 17th. For most of the over 200 standing room only guests his passing came as a shock. For those of us who became his close friends with daily contact, we knew he had suffered severe complications over many months and had great difficulty in receiving proper medical care.

For the family and friends who knew him, Robert Doyle was bright and funny, thoughtful and intelligent, with a mischievous sense of humour, a ‘wind-up-merchant.’ Often wise beyond his 30 years, Rob was far too young to be lost to his family and friends who miss him terribly.

Rob’s sister has set up a page for charitable donations in his name at:

https://www.justgiving.com/Rachael-Smith154/

We miss our dear friend Robert Doyle

Tino, Joy Scobby, Beorc, Polly, Snow, Stuart, Flex, Hatshepsut

Rob at a family wedding

Rob's mother Diane knew that the forum had members from all over the world and that Rob made some lovely friends, not all with ME. Her response to the tributes from his online friends:

“First of all I would like to thank you all for being good friends with Rob, I don't think he realised how well thought of he was. Rob started with ME when he was about 21. At the beginning he coped going part time to uni and part time work. As time went on Rob's life changed, as you all know what it's like, never going to family parties and get-togethers. Most of his life was four square walls. He described his illness as having flu all the time. Last year he heard about a doctor in the Netherlands who was doing good things with ME sufferers. He was looking forward to going with his dad to see if anything could be done. Then at the beginning of this year things changed, he was in terrible pain he tried A&E, local doctors and even went private. He would have done anything for relief but none came. His own doctor more or less threw him out and said there was nothing wrong with him. He tried everything to no avail. No-one deserved to be treated this way. Just before he passed, he read about Lyme and wished he had known about it earlier. It's a shame he found no peace. Rob never lost his sense of humour. He was funny, generous, would do anything for anyone, and was looking forward to coming to the coast to live, but the NHS took everything away from him. All I can say is fight the NHS and the doctors try and stand up for your rights, and now and then think of Rob.” 

Rob with sister Rachael

Diane said that Rob had “asked that he didn't die in vain”. His sister Rachael created a JustGiving fundraising page and Facebook group and Rob's wonderful family, including sister Jo Ann, niece Lucy, and their friends set about a number of ways to raise funds for Invest in ME. This included selling the Christmas cards and calendars produced by our campaign in support of Invest in ME, wristbands, running raffles and collections at family events and, “anything else I can think of to make money for such a deserving cause, we just want to do something for others who suffer just like Rob”. She wrote:

In July I lost my younger brother Robert who suffered from ME. We're trying to raise money for a great charity that doesn't get the publicity it needs to raise the fund that so many deserving people in this country, and others, need.

ME stands for Myalgic Encephalomyelitis, And there are over 250,000 sufferers of ME in the UK alone, with around 25% of them being severely affected, in other words they're bed or house bound. with your help, we can help these people, and the their families.

Your donations will be a BIG help for such an unknown cause, no matter how small.

People who suffer from Myalgic Encephalomyelitis (ME) are forced to live in a bubble. Invest in ME campaign to burst that bubble by raising awareness and funding high quality biomedical research into ME. To those donating, “ I cant thank everyone enough, this is a charity that is so close to us as a family”. 

Our team members join Invest in ME in expressing our thanks to Rob's family for allowing Robert's memory to be used to raise awareness of ME and help others. Our hearts go out to them. Rob is also remembered in the Spring 2014 Journal of Invest in ME and the 2014 Invest in ME Conference DVD (IIMEC9) is dedicated to his memory.

Robert Doyle - forever in our thoughts.

Robert Doyle 4.5.1983 - 6.7.2013

New Year Matching Donation Offer!

What a great way to help us see in the New Year - all donations to two of our JustGiving fundraising pages for Invest in ME charity - including donations by text - will be matched £1 for £1 up to a combined amount of £1250 until 6th January! 

We have received the wonderful offer of £1250 (£1000 + £250 Gift Aid) as a matching donation by an incredibly generous friend of Team Let's do it for ME! This is in support of the UK rituximab clinical treatment trial being organised at University College London by Invest in ME.. The matching period runs from New Year's Eve to Twelfth Night on 6th January. It will apply to two of our JustGiving pages.

1. Ruth Gilchrist's 1st of each month One Day – One Pound (1 Day - £1) - minimum donation is £1 by JustTextGiving by texting this code - APFR99 - and the amount - £1 (or £2, £3, £4, £5, £10) - to 70070 - or from £2 via the JustGiving page:
http://www.justgiving.com/onedayonepound

2. Sue Page's small change to change M.E., which she launched on 1st January last year, so if you've been collecting your small change over the year, time to add it up and be counted in! http://www.justgiving.com/Sue-Page1

The £1250 includes Gift Aid (25% extra from the government on donations made by UK tax-payers so don't forget to tick the Gift Aid box when you donate if it applies to you) but all donations will count towards the total matched amount, whether or not you live in UK or are a UK tax-payer.

The combined total of the two pages at the time of the announcement was £6505 (inc. Gift Aid) so all donations from this amount will be counted and matched £1 for £1 until a combined total of £7755 (inc. Gift Aid) is reached or until 6th January if we haven't reached the full matched amount.

So don't delay – donate today and let's get the New Year off to a flying start!

Links to more info ..

IiME/UCL/UK rituximab trial microsite
http://ukrituximabtrial.org/
Invest in ME (Research)
www.investinme.org
Let's do it for ME!
http://ldifme.org/

*Let's do it for ME! is a patient-driven campaign in support of the 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*

Thank you for your support throughout the year - Happy New Year to one and all!

Happy 22nd Birthday Rosa!

Happy 22nd Birthday Rosa and may all your wishes come true!

Can it really be a year since Rosalind Amor launched her 21st Birthday Appeal?  

With the help of her family, and with support from the staff of the nursing home, where she was being fed by naso-jejunum tube,  Rosa's 21st Birthday Appeal raised a staggering £3881.69 plus £645.75 gift aid.  

This helped to achieve our initial fundraising target of £100,000 to fully fund the foundation research project on gut microbiota in patients with myalgic encephalomyelitis at the University of East Anglia. 

What a difference a year has made thanks to Rosa, her family, supporters, sponsors and all those they represent in our community, who should feel very proud indeed of what has been achieved and continues to be achieved by all the amazing, courageous and determined efforts to make the progress in research and treatment proposed by Invest in ME happen. 

Thankfully, Rosa is doing a little better this birthday and is still an undercover operative in the planning group for Let's do it for ME!  Earlier this year, Rosa posted that she'd had a dream that someone had given her £250,000 for LDIFME.  We have shown that we can make our dreams come true, as we have since received a donation of £25,000 to enable the study on B cells to go ahead at University College London, and a further pledge of £200,000 for the clinical treatment trial of rituximab, bringing the total raised so far since we launched our campaign in July 2011 to a whopping £368,000 and rising!  

Happy Birthday Rosa and may all your hopes and dreams come true! 

Rosa's 21st Birthday

9th November 2012

All I want is to be like other 20 year olds; to travel and go to uni; to socialise and be independent; to walk, swim, dance and ride. I've already lost a decade of my life to this wretched illness. Please don't let me lose another.

I've had ME for 12 years. Before that, I was a healthy child. I was always playing; I loved Puppy and Kitty in my pocket sets; I went to ballet and modern dance lessons, swimming, watch club, was learning the violin and was a junior member of the RSPCA.

When I was eight my grandma and hamster died in quick succession, followed by a unknown virus of the gut. I had a terribly high temperature and was sick on everything, even water. Unfortunately, I didn't recover. I was diagnosed with ME quite quickly but sadly, this didn't make my treatment any better. I was admitted to hospital and given physio, then sent home and relapsed terribly.

I don't remember the following year. I know I lived on Complan all that time until we finally persuaded our doctors to give me a tube. I was admitted to hospital again for a few months - a painful experience.

I was paralysed and bed-ridden for 7 years and was tube-fed for 5 and a half. I remained at home, cared for by my parents. My symptoms included; paralysis especially my legs and swallow, hypersensitivity, headaches, muscle pain, 'brain fog', muteness, orthostatic intolerance, insomnia, spasms, severe nausea with a period of vomiting and extreme tiredness.

At 15 my health dramatically improved. I was able to stand and use a wheelchair. Briefly, I was even able to walk independently around the house though still needed a wheelchair outside. I became involved with my local wildlife trusts, visiting their reserves, attending 'wild learning' courses and part of a youth group.

However, from the end of 2009 my health slowly worsened again until last year, when I had a tooth infection and a bad back, I had a major crash. My worst problem this year is vomiting which worsened my tiredness, hypersensitivity, cognitive functioning and insomnia.

I always believed that one day my body would naturally heal itself and I'd return to my previous levels of health. Now I'm less confident of recovering unless someone finds a treatment.

Click here to read more from our 2012 December update on Rosa's Appeal.

.......................................................

This editorial accompanied advertisements placed by Invest in ME.

We reached our initial £100,000 in May 2013.

Our campaign fully funded the foundation research project now underway 

at the University of East Anglia.

Click here to see the current research projects which Invest in ME is funding, is intending to fund or would like to fund.

Click here to read about the 

Invest in ME proposal for a centre of excellence for ME.

Our campaign website - Let's do it for ME!

Thank you for your support.

The Big Sleep for M.E. is back for 2013!

Following the great success of last year’s event, The Big Sleep for M.E. is back for 2013. And this year with your help, it’s going to be even bigger and better! This fun and inclusive awareness and fundraising event for the UK Centre of Excellence for ME, includes a mass sleepathon that runs throughout ME Awareness Week 6 – May, as well as an opportunity to hold your own ‘sleep inspired’ event, such as PJ parties, PJ Pride Days and Sleepwalks, Sleep-cycles and more, so that even more people can get involved.

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 are holding your own ‘sleep inspired’ event.

Whilst the Sleepathon takes part during ME Awareness week this doesn’t mean you can’t have your own sleepathon or ‘sleep inspired’ event at other times of the year. We need to keep up the pace if we’re going to beat ME!

The Big Sleep for ME has expanded massively since last year, and to get in the party mood it will be running a number of competitions and special events, including ones for children. There’s even a special Kids’ Den webpage for children with activities and competitions. It’s a fun way for them to get involved and keep them busy.

The event now also has its own online shop where you can buy Big Sleep merchandise such as sleepwear, tops and, the very popular Big Sleep Bear, that comes complete with his very own nightcap. For those on a budget, there are free stickers and transfer downloads.

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 the Centre, but also to increase awareness of ME generally.

There are so many ways to get involved and the fantastic thing about The Big Sleep for ME is that everyone, from sufferers to healthy supporters, can unite together to do something positive for ME.

If you want to find out more, the event’s website is a good place to start. The event also has its own Facebook page and is on Twitter, you can also email them. If you fancy taking part, the team has set up a group JustGiving page which you can join to make it even easier for you, and there are extensive online tools and information to help as well. You need to register to take part, but as thank you, you’ll be entered into a Free Prize Draw. The team have introduced this 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 via its JustGiving page or by texting BSME99 to 70070 with the amount you would like to give (for example BSME99 £5 to 70070).

With special thanks to Julia Cottam from our ‘Let’s do it for ME’ team for thinking this up, and for all the hard work she’s put into developing and launching this inclusive and positive venture, as well as to everyone taking part.

We can all make a difference to ME!

Harrison Honey

Alison and Phil wrote:

This picture (right) was taken of our son Harrison Honey, 6 months before he got sick with CFS/ME.

He was just turning 11 years old and it was his last day at Junior School, Year 6.

This was taken at his leaving concert. The theme was :-

 ‘Reunion 2020 – what you had become’.

Harri has always wanted to become an Airline Pilot ever since we can remember.

A week after the above photo was taken, we flew out to Grenada in the West Indies, for a wonderful two week holiday.  My brother was getting married out there and what a wonderful day it was!  

Harri had such fun celebrating with his little sister, Lydia, (then aged 2)

and his younger brother Jayden, then (aged 8).

On the return flight home, he was fortunate to be able to visit the pilot who showed him around the cockpit.  

He was so excited. 






In the September of 2010, he started his new Secondary School and all was going well, he had settled in well.   Everything was normal.

Sadly in January 2011, six months after our wonderful holiday to Grenada, he became very sick. 

Little did we know then how it would change our lives as we knew it.
Three months later he was diagnosed with CFS (Chronic Fatigue Syndrome)/ME (Myalgic Encephalomyelitis) which is a serious neurological condition.

His symptoms can fluctuate daily, the symptoms can come and go, or they can ease or get worse. Symptoms he has suffered include, apart from the on-going obvious debilitating fatigue, problems with his brain and central nervous system, resulting in loss of memory, concentration, balance, coordination and fine motor skills.

Experiences difficulty with sequencing words and numbers, speaking, thinking and absorbing information.

Muscular weakness and can often be seen twitching or having muscle spasms.

Exhaustion up to 72 hours after effort. Even minimal exertion (cognitive or physical) can trigger exhaustion.

He has abnormalities in sleep rhythm (i.e. insomnia), appetite, temperature control, digestion, blood pressure, circulation, dizziness & nausea, bouts of racing pulse (tachycardia), particularly upon standing.

Development of sensitivities (e.g. to light, sound, touch), mood swings, panic, anxiety or depression which is a result from brain dysfunction and the distress of this misunderstood illness. 

He has spent about seven weeks, on two separate occasions, in hospital as an in-patient where he was receiving regular monitoring, play therapy, hospital school, and physio, to help him regain the strength to walk, as his legs were like jelly and he didn’t have the energy to be able to stand. He has also spent at least six months at hospital as an out-patient. He has endured various hospital tests, including many blood tests, MRI brains scans, EEG’s, ECG’s, blood pressure monitoring and Tilt Table testing.

He will be 14 years old this July and although his illness is not life-threatening, during these last two years his young life has been completely put on hold in every way and he has been pretty much housebound. The impact upon the family has been devastating, especially for his siblings, which then becomes another issue you have to face. Life is far from normal, but we do our utmost to try to make it as smooth as possible.  

Harri was always a bright child, extremely academic and very sporty – there are not many sports he has not tried. I think ‘Free Running’ is one of the few yet still to try and this is something he would love to try out one day.

He has sadly now missed out almost three school years and misses all his friends that he had made – and all the activities he used to do, just being an ordinary boy. He just wants his life back as he knew it. He can now barely walk 100 yards without feeling awful and has to rely on his wheelchair.  Even standing up proves difficult as he begins to feel dizzy & sick. We can't rewind time, and as precious as it is, it keeps passing him by.  He gets particularly upset around special events such as Birthdays and Christmas understandably as it sparks yet another reminder of time passing him by.

It is still such a misunderstood illness and continues to baffle the medical world.

So in an attempt to feel that he is at least doing something to fight his illness he decided to raise money for a charity called IiME and by doing this helps to raise awareness and ultimately find a cure.

He has been completely overwhelmed so far by everyone's generosity and this has helped give him a boost and lifted his spirits.

We would like to say thank you for your time in reading this – and extra special thanks to anyone spending an extra two minutes of your time by clicking on the Just Giving link below:-

http://www.justgiving.com/Harrison-Honey

Love Ali & Phil Honey

Many thanks and very best wishes to the Honey family and all Harri's sponsors from the Team at Let's do it for ME in support of Invest in ME.