29 January 2012

Weight loss challenge

Yesterday, Tanya and Dave started their weight loss challenge. Here, Tanya explains why…..

‘Our daughter Tara fell ill with M.E. in November 2010, when she was just 10 years old.  Since then she has been unable to attend mainstream or medical school.  This led us to make the difficult decision to de-register her and we will begin home-schooling ourselves when she is a little stronger and able to concentrate enough to take short lessons. 

As a family our lives have dramatically changed since this illness, Tara has two older sisters who find it very difficult to see her in pain and unable to join in with them.  They try not to go on about their social lives in front of her because they feel guilty being able to do all the things Tara should be able to do too.  However, Tara never complains and always sees the bright side of any situation, no matter how hurt she feels inside.  She suffers from chronic pain, headaches, dizziness (blacking out on occasions), regular sore throats and swollen glands, nausea, noise sensitivity and can’t manage large social gatherings due to the sensory overload and exhaustion it causes.   These are just a few of her symptoms – there are many more! She needs to take various medications to help her control her symptoms and misses life as it used to be. 

Tara used to be such an active child.  Always on the go, singing all the time and dancing her way around the house.  She attended tap and modern dance lessons, musical theatre and also dance groups at school.  Nowadays we use a wheelchair for when we go out as a family, as Tara can’t walk too far due to exhaustion and the pain it causes in her limbs and back.  She struggles to sing and if she does, it’s at a whisper as the strain of it hurts her throat.  Although at the moment her activities and social life are limited and have to be managed very carefully, she is able to maintain friendships.  Sadly the number of her friends has dwindled as it is difficult for her to participate with them as a “normal” child would, she can’t go roller skating, swimming or mess about in town with them.  BUT the friends she does have are extremely supportive and loyal and understand that she is limited in her activities and pop in after school for 10 minutes to say hi – or visit for a couple of hours at the weekend to dress up or watch films together.

We have no idea what the future holds for Tara but we are positive and pro-active in her care, always looking out for new treatments and medications which may help her.  We are currently following a regime with both the Children’s Hospital and an Osteopath/ME Specialist.  At the Hospital we utilise the skills of the Consultant, Physiotherapist, Occupational Therapist, Clinical Psychologist and Pain Clinic.  We attend Hydrotherapy for half an hour once a week with the Physiotherapist and Occupational Therapy Group meeting for an hour once a week.  We have regular review sessions with the Pain Clinic, Clinical Psychologist and Consultant too.  The Osteopath/M.E. Specialist has just started treating Tara using the Perrin Technique and is herself an M.E. sufferer.

As a family we’ve had to make a number of adjustments and it hasn’t been an easy ride so far. During this time Dave and I have both gained some padding and now we feel in the right frame of mind to address this BUT wanted to do something to help Tara and other sufferers at the same time.

Invest in M.E. is a fabulous charity with a great vision for M.E. patients.  We want to help raise funds for them to achieve this goal and help support not only Tara, but all the children and adults whose lives have been so drastically altered by this devastating illness.

I have a whopping 42lbs to lose and Dave has 35lbs to go – so in total we aim to lose a combined weight of 77lbs by August!  We are starting our diet today – Saturday 28 January we hope to lose pounds whilst raising pounds for Invest in M.E.

We are asking everyone to please help us on our journey, but if you can’t afford to donate then please spread the word about Invest in M.E. and 
help us raise its profile and the need for more research and funding into this area.

The link to our Justgiving page is: -

or if you prefer, donations can be given for as little as £1 via text message, all you have to do is text:-

XPDL 95 £1 (or whatever amount you wish to donate) to 70070

Thank you.

Tanya, Dave, Keisha, Tasha and Tara Mawer

21 January 2012

Paul and Susie March- Running the Paris Marathon April 2012

Running up a steep hill in Wimbledon at 9am last Sunday morning with my husband made me think about two things….

1.     Why did we go on a run in an area which feels like the most mountainous place in London if not the earth… and more importantly;
2.     Why was I training for a marathon when quite frankly running hurts and is quite boring?

Then I remembered….

Growing up, my Dad was like action man! He would play with my sister and I for hours, take us swimming, sledging, play rounders with us and all the other kids in our street…He used to play football, hockey, run and cycle regularly and was by far the fittest member of our family! His life was very active and then everything changed for him and our family when he got ME.

He can no longer work or do the hobbies he once loved. He can’t come and visit us in London where we now live. He can’t take my Mum on holidays or even go out most days. Some days he can’t even get out of bed.

Me and Dad
However despite this, there are things that he has done and continues to do that we are very proud of him for. He has made a lot of great friends with ME and has supported them in whatever way he can though he is limited by his illness. He has campaigned for ME awareness and has continued to fundraise and promote the ME cause over the last few years.

And this kind of puts the marathon in perspective! Yes, it is a few months training and it will be tough, but some people have it much tougher.

So we want to support these people and my Dad through the Let’s do it for ME campaign. We hope that this campaign will turn the tide for those with ME and that through the planned establishment of a Centre of Excellence at the University of East Anglia specialising in biomedical research into ME,
ME might finally be understood and a cure found.

Please support us in our race at –

Thanks for reading and we will keep you updated with our progress!


Susie and Paul's friend David Coleman is also running the Paris Marathon for us -
Paul and Susie

Paul, Susie and David in Paris on Saturday
UPDATE: Sunday 15th April - The Paris Marathon was televised live on Eurosport. 

Dave and Paul finished in under 4 hours and Susie under 5 hours.  It was tough going as it was cold and windy! 

Their Just Giving pages are still open for donations

Click here for Paul and Susie March's fundraising page.

Click here for David Coleman's fundraising page.

Please share and tweet - this biomedical research is aimed at finding treatment(s) for myalgic encephalomyelitis as rapidly as possible - thus helping many thousands of sufferers of all ages across UK and Europe and their families.

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

15 January 2012

£25,000 target passed!

Fundraising Thermometer
We are pleased to announce a new total of funds raised so far of £25,161. This takes us past the quarter way point on our way to raising the required £100,000.

Thank you to everyone who's helped us get this far, we'd love to raise the remaining £75,000 in time for the Seventh Annual Invest in ME International Biomedical Conference which will take place on 1st June - more details.

Can you help? Please take a look at the ways you can help on our How to Help page.

Are you able to donate? See the donation options here

Don't forget to sign up with Everyclick and Easyfundraising to raise funds for FREE while you shop online and search the web - more details can be found under RAISE FUNDS FOR FREE! here.

Please contact us at fundraising4me@gmail.com if you have any questions or suggestions for the campaign team.

Let's keep doing it for ME!

10 January 2012

LDIFME bear meets..

The Let's do it for ME! bear has been out and about making new friends and raising awareness thanks to North East born performer, Jessica Robinson, who kindly invited him backstage at Middlesbrough's Little Theatre during her recent stint as Snow White in Snow White and the Seven Dwarfs.

Backstage at Middlesbrough theatre with Jessica
Jessica, 20, from Normanby, came fifth in the BBC programme Over The Rainbow, losing out on the lead West End role as Dorothy in Wizard of Oz to the eventual winner Danielle Hope in a sing off during the eighth live show.

Jessica received great feedback from the judges with Andrew Lloyd Webber describing her as a "world class star". She described her involvement in the TV contest as
 “a brilliant experience” and remains dedicated to achieving her goal of performing in the West End. 

A big thank you to Jess for taking good care of LDIFME bear and helping to raise awareness with these great pictures.

Meeting Claire King the 'Wicked Queen'
Backstage he also got to meet Bad Girls and Emmerdale actress Claire King, who starred alongside Jessica as the Wicked Queen. Bear wasn't scared at meeting the Wicked Queen, as he's a very brave little bear, but it did help that she wasn't wearing her fearsome costume

Thank you Claire for helping to raise awareness of the need for biomedical ME research!

LDIFME bear was last seen at Middlesbrough station boarding a train to London with Jess, and her many bags of luggage, as she returns to London and to her 2nd year of studies at Arts Ed. He is hoping to meet up with some more famous faces soon.. 

If you'd like a visit from LDIFME bear contact us at fundraising4me@gmail.com

Let's do it for ME!

LDIFME Bears are also available for adoption from our online shop