15 February 2013

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:-
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.


10 February 2013

80,000 and Counting

Invest in ME wrote....

80,000 and Counting

Let's Do It For Me

Since its inception Invest in ME have campaigned for biomedical research into ME. With the Let’s do it for ME team we are, together with wonderful supporters, turning this into a reality.

Now the research fund for biomedical research into ME has reached £80,000, thanks to the great ideas, efforts and commitment of so many great people. We have also had a truly generous donation of £3000 from one donor, who wishes to remain anonymous. We thank you all.

LDIFME is a patient-driven campaign to raise awareness and vital funds for the  proposal for an examination and research facility that can lead to a centre of excellence for translational biomedical research into Myalgic Encephalomyelitis (ME). The centre would clinically assess, diagnose and treat patients. Working in a  collaborative way with international researchers and providing training and information for healthcare staff such a facility to drastically change the rate of progress in finding treatments or cures for ME. 

The campaign is run by patients and carers who want the findings of high quality research to result in the development of appropriate treatments and who will not give up that hope for the future, despite the huge personal cost to their health that a lot of the campaigning has caused. 

We began arranging our biomedical research conferences in our first year and have continued them ever since – recognising that the need for biomedical research into ME also needs a platform to show that research. At our IIMEC8 conference we focus on ME now becoming a mainstream research area and we have representatives from most of the main biomedical research initiatives now occurring throughout the world. 

And thanks to supporters the UK will now be able to claim a promising project to add to the research base.

We thank the LDIFME team and supporters and all the supporters of IiME and the research proposal.

In stark contrast to the myths portrayed by some elements in the media, and by some establishment figures, the LDIFME campaign shows the true nature of people with ME and their families - looking to make progress and regain their health, using forward thinking and a can-do approach to raising awareness and making ME a mainstream illness.

The campaign by ME patients and their families may not receive much publicity but, as we have said before, actions speak louder than awards.

1 February 2013

Campaign Updates

Latest Total Raised - £76k .... and rising!

* What an incredible start to the new year for the campaign with so many new initiatives and more supporters coming on board, as well as benefits from all the fundraising efforts during the festive season, such as the £139.66 raised from Jon Watson's Make ME Crafts stall and the wonderful response to young Harrison Honey's JustGiving appeal.  Please feel free to email us at:
fundraising4me@gmail.com or post a comment on the blog or our Facebook page if you would like your ideas or events to be highlighted. Your amazing efforts at raising ME awareness and funds for this vital biomedical ME research are really making a difference and are more greatly appreciated than we can adequately express and here are just some examples ...

* One sponsor helped us to see the New Year in with a celebratory matching £100+Gift Aid donation to the One Day – One Pound event on 1st January! Many thanks to all who support this monthly event inspired by Ruth Gilchrist, by donating or spreading the word among family and friends that every £1 Invest in ME receives will be spent on biomedical research to help take us forward to our goal of proper medical treatment of this disease, myalgic encephalomyelitis (ME). 

 * New for 2013 is a great idea by Sue Page that she calls “small change to change M.E.” Are you or someone you know in the habit of setting your loose change aside until it mounts up, or is it something you feel inspired to do during 2013 in aid of our cause?  As with all the fundraising ideas, please don't worry if you can't afford to donate yourself, we value all efforts to raise awareness of the reality of myalgic encephalomyelitis and the need for high quality biomedical research aimed at making proper medical treatments available asap.

 * Several new JustGiving pages were created during January in support of Invest in ME ...

 Vivien Leanne Saunders wrote on her page, “I've never been particularly sporty! Well, this year I have decided to enter every running race I can, and I will have a fundraiser for Invest in ME for each one. I'm starting with the Alexandra Lap at Lancaster University, which will be the first race I've ever run! Thanks for your interest! Even if you can't donate for whatever reason, please take five minutes to visit http://investinme.org/ and read a little of what Myalgic Encephalomyelitis really means, and how it affects people's lives”.

Victoria Shorthouse running in the Worcester Marathon for Louise who has ME; Samantha Brown gave up her mobile phone for a whole week in January; Michelle Nix is doing a sponsored weight loss; Adam Werth wants to increase awareness of the disease; Amy Christian's idea is for people to be sponsored to read as many books as they can within a given time-frame. Jackie Robinson, Catherine Bligh and Dawn Guarnieri are among those joining Lesley Innes' in a PJ Day on ME Awareness Day 12th May in aid of Invest in ME. Luke Remnant is organising a Walk for ME event with a little help from his friends and signed up to join him in supporting Invest in ME so far are Tanya Mawer, Lesley Innes, Lianne Simon, and Rory the Dog on behalf of Tony Bradstock. The idea is for people who are fit and well to do a sponsored walk – anywhere for any length some time during May ME Awareness Week - on behalf of someone who is ill with ME or for their chosen charity in general.  Click here to see the full list of all supporters raising funds for Invest in ME on JustGiving.

* Keela Too was delighted to announce that her daughters' school is going to put up a teacher's team and a pupil team to run the Belfast Marathon and that Invest in ME has been put forward as the chosen charity for this year.

 * Many thanks to Stacy Hart and those of you who bid on eBay and bought her blinged up Hosung soft toy monkeys. Stacy has paid the full proceeds of £120 to Invest In ME and said, “So give yourselves a pat on the back, thanx again its mega appreciated :) xxx"

 * Sue Head Evans' superb range of scarves has raised £350 for Invest in ME so far and she'd really appreciate your help to raise even more!

 * Jane Hurst was pleased to announce that the total raised for Invest in ME from April to December 2012 from sales of her greetings cards and Nature photocards was a whopping £620 (this includes £55 in Collection tins at Morrisons). Jane said, “Thanks as always to Mum (Christine Hurst), Dad and Paul for all their help, and for selling so many cards at the Supermarket sales. It's really appreciated. xx" Jane's cards are here: Pack 1http://www.facebook.com/media/set/?set=a.156767279186.145229.639834186&type=3
Pack 2 http://www.facebook.com/media/set/?set=a.156759794186.145225.639834186&type=3

* Becky at Beansprouts was among the new people to join the wonderful Make ME Crafts Team. You can see the really lovely range of items they provide in aid of Invest in ME on the Make ME Crafts Facebook page and website. We also plan to add a full directory of sellers to the Let's do it for ME website as we go through the year, so please email us at
fundraising4me@gmail.com with your seller contact details and any photos you'd like us to highlight. 

* The Big Sleep for ME launched with great success in 2012 for ME Awareness Week and promises to be even bigger and better in 2013. Organiser Julia Cottam is currently updating the website with plans and ideas for all sorts of activities to suit supporters of all ages and levels of illness severity. 
 *  There is also the SOBAFF charity walk which ends in London in time for the 8th Invest in ME conference on 31st May - wow, what a busy year ahead and how wonderful to have such support!

* The remaining calendars made by Let's do it for ME supporters for Invest in ME are reduced to £3. With 12 beautiful landscape photos, introductory info, and a different fact about ME at the foot of each page to help keep awareness going throughout the year, they are ideal if you'd like to buy one as a free gift for display where people will see them for your local GP surgery or health centre, waiting rooms, library, local shop etc.

Don't forget to browse through the pages on our main website for other ways and resources to help raise awareness and funds throughout the year and make 2013 lucky for some – Let's do it for ME!

More news to follow soon - meanwhile, thank you so much for your support!