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Monthly Archives: January 2017

Catherine’s Sponsored Haircut

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Catherine Milsom is raising funds for Invest in ME Research
and donating her hair to The Little Princess Trust – www.justgiving.com/fundraising/catherine-sponsoredhaircut
Catherine's hair cut

By Catherine Milsom –

Thanks for taking the time to visit my JustGiving page. I was diagnosed with Myalgic Encephalomyelitis (ME) in 2004 at the age of 19. A year later I became bedbound due to my symptoms becoming so severe and this situation continued for about 7 years. During this time I was unable to do anything for myself independently and had to rely heavily on my parents for care – even down to them feeding me liquidised meals. I was in too much pain and too fatigued to be able to eat solids or to feed myself. I lay in a darkened/silent room 24 hours a day, as light and noise made my many symptoms worse. Thankfully with rest, supplements and TLC from family, close friends and Carers my health has improved over the years. I am now housebound/bedbound and have a better quality of life although I still have a long way to go.

I really want to play my part in raising funds for research into this horrible illness, in the hope that one day they will find a cure so that others will not have to go through what we and many others have and still do endure.

So a while ago I decided to grow my hair and eventually be sponsored to have it cut and then donate it to The Little Princess Trust for them to use for a wig.

Yippee, my hair is finally long enough for me to achieve my goal! I will be able to donate about 14″.

With your help I would like to raise a £1,000 for Invest in ME Research.

Thank you very much for your support it means a great deal to me. Xx

Share Catherine’s story or donate at www.justgiving.com/fundraising/catherine-sponsoredhaircut

Elizabeth’s 8″ Hair Cut for Invest in ME Research

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Elizabeth Moon is raising funds for Invest in ME Research and donating her hair to The Princess Trust – www.justgiving.com/fundraising/Elizabeth-moon

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By Elizabeth Moon –

Thanks for taking the time to visit my JustGiving page.

I had Glandular Fever when I was 12 and never recovered. Over the following years it morphed into ME via repeated viral infections, each one acting like a nail in my coffin until I became severely fatigued, plagued by a myriad of symptoms, including body-wide pain with migraines 80% of the time, causing me to be mostly housebound and unable to work or socialise.

ME stands for Myalgic Encephalomyelitis.

Myalgic Encephalomyelitis is a multisystem, complex, acquired illness with symptoms related mainly to the dysfunction of the brain and nervous system, gastro-intestinal, immune, endocrine and cardiac systems. ME has been classified as a neurological disorder in the World Health Organisation’s International Classification of Diseases since 1969 (ICD 10 G93.3).

There is no cure, biomedical treatment or biomedical management for ME on the NHS. This is due to the lack of biomedical research on which NICE can base its guidelines. However, worldwide, research has begun to identify the pathological workings involved in ME, has identified possible biomarkers which would enable a definitive diagnosis, begun to understand mitochondrial dysfunction in the production of energy and begun investigating the use of particular drugs in order to treat the disease.

Invest in ME are raising funds to replicate the Norwegian research into the use of Rituximab to treat ME. They are also setting up a Centre of Excellence for ME ‘which would exist to bring discovery, knowledge, and effective treatments to patients with ME’ and they hold yearly conferences and colloquiums to bring researchers, patient groups, patients and carers together to discuss the latest biomedical research.

Until 2 years ago when I came across this wonderful charity, I had resigned myself to a future where there would be no cure, treatment or understanding of my illness. But this charity, by redirecting research in a biomedical direction, has given me hope for the first time.

I will be sending the hair to the Princess Trust so they can use it to make wigs for children going through chemotherapy. This is why I will be having at least 8″ cut off 😱. I’ve always had long hair, being a hippy at heart, but this is the one thing I’m still able to do to raise money for this great charity. And it will be great knowing that somewhere out there, somebody has hair and feels better about themselves while going through a tough time.

Thank you for your support 💜

Share Elizabeth’s story or donate at www.justgiving.com/fundraising/Elizabeth-moon

Welcome to Walk for ME 2017!

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To celebrate the fifth anniversary of Walk for ME annual event for May ME Awareness, the team will donate £5 to the first 5 people who set up fundraising pages and join the Walk for ME 2017 team on JustGiving.

They wrote –

We’ll also donate £50 to the first page to reach £50!

Hope you’ll come and join the team.

Happy 2017 from Ian, Sarah-Louise and Luke x

To support our fundraising for Invest in ME through Walk for ME 2017, follow the instructions below on how to set up your page on JustGiving and join the Walk for ME 2017 team below. You can also follow the Walk for ME 2017 event on Facebook for all their news and updates!

1. Go to www.justgiving.com and click on “make your page”
2. Select ‘Personal challenge’
2. Either log in to your justgiving account or click “No – I’m new” to set one up
3. Search for the ME charity you wish to support (please select Invest in ME to support our cause – https://www.justgiving.com/investinm-e)
4. Click on personal challenge and follow the online steps
5. Choose your justgiving web address
6. Click on “create your page”
7. Personalise your page. You can say who you are walking for and why you are walking
8. Then go to www.justgiving.com/teams/walkforme2017 scroll down and click on “Join the team”
9. Select your fundraising page to add it to the team!
10. You can then send your own justgiving address to friends to raise sponsorship. Any target you set on your own page will automatically add to the team target.

If you have any difficulties you can contact the justgiving support team on 0845 078 2063 or email the Walk for ME team at theteam@walkforme.co.uk
or find Walk for ME on Facebook.

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If you have a pet and would like to join George and Graham by doing a Walkies for ME 2017 for Invest in ME Research then you are welcome to use this link to the page they have set up, which is already part of Team Walk for ME 2017 – https://www.justgiving.com/fundraising/Walkies-for-ME1

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Click here for our page about Walk for ME.

A huge thank you to Team Walk for ME for 5 amazing years!

11th international IiME conference 2016 DVDs now available!

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The DVDs from the 11th international Invest in ME conference 2016 are now available to order via PayPal or postal cheque.  Starting at  £14 for Uk purchases, £15 Europe, £17 rest of the world, the DVDs show full presentations from conference plus pre-conference dinner speech. Click here to be the first to buy!

www.investinme.eu/IIMEC11.shtml#dvd

Registration for the 12th international Invest in ME Conference (#IIMEC12) 2nd June 2017 now open –
http://www.investinme.eu/IIMEC12.shtml#register

Amy Tooley’s 500km of running in 2017

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Amy Tooley has set up the first JustGiving page for Invest in ME Research of 2017! She explains why in her story on JustGiving ….

I have the best big brother that you could hope for. He is kind, caring and very funny (annoying sometimes too like an older brothers usually are)!

I have spent my life looking up to him, his opinion of me and my life choices matter greatly to me.

I have watched him go through life having fun and being successful in everything he has put his mind to which is why it is so hard to now see him struggling daily all because of him having ME.

I have seen this cruel illness, that very little is known about, take so many things from Luke. I have seen it wear him down to some scary places but I have also witnessed my amazing brother fight back everytime. I knew he was tough but I never realised how tough until he got ill. Those of you who know me well know how much ME has affected Luke and all his family.

I cannot even imagine half of what he goes through every day due to this illness and what makes it all even worse is that unlike other illnesses there is no medication to cure it or lessen the symptoms.

Luke is reading and researching everything he can on ME and is trying to raise money for research charities such as liME by setting up an annual “Walk for ME” event with his friends which has raised over £70,000 to date to fund this vital research.

I have not run 10k since August 2015 when I found out I was pregnant with Josh so the thought of running an average of 10k each and every week for a year is pretty daunting but if I can raise £500 for ME research then every km and shin splint will be worth it.

Fitting running into my days with two little ones to look after and returning to work in May is a bit of a daunting task so even if you can only spare a couple of quid to help me get to my target I would greatly appreciate the support and motivation.

Thanks!

Amy x

Thanks for taking the time to visit my JustGiving page. www.justgiving.com/fundraising/AmyTooley

Proud big brother Luke Remnant sent us the photos above of Amy with him as children and with her husband Rich. Luke plans to write a guest blog later, when he is feeling a little better, as and when his health allows. He has been busy, along with Sarah-Louise Jordan and Ian McPhee, launching Walk for ME 2017, the 5th year of this successful month of May ME Awareness fundraiser for biomedical research into ME (Myalgic Encephalomyelitis). Here is our page with further information and all the links for anyone wishing to support Invest in ME Research by taking part in Walk for ME 2017 – https://ldifme.org/teams/walk-for-me/