GALAXY HOT CHOCOLATE FUND – Let’s Do It Again!

UPDATE: You did it! Well done and big thanks. Invest in ME posted:
“We are proud to announce that Invest in ME is among the winners of the Galaxy Hot Chocolate voting competition. Thank you to all our supporters who voted and promoted this fundraising.”

Every week, until February 28 2016, Galaxy Hot Chocolate is looking to help local community groups and charities across the UK and Ireland by awarding five £300 cash awards a week. (click here to vote for Invest in ME Research).

Four of these will be awarded by their judges’ panel. There will also be a People’s Choice Award every week which will be awarded to the entry with the most votes in any given week.

Invest in ME Research was a winner of the People’s Choice Award last year thanks to a week of concerted voting inspired by Anne Örtegren.

The winners are selected on Monday each week.

Entries and votes are taken up to 11:59pm each Sunday, and voting for the next week starts at midnight. One vote per email address per week so no daily voting.

As Russell Logan says on his great site ‘Shout About ME’, it doesn’t cost anything so it’s a great way to support the little charity we all love.

It would be great to win again this year, so on our marks from midnight Sunday 6th December and please share widely through the week. Thank you!

Vote here – https://www.galaxyhotchocolate.com/fund/profiles/invest-in-me

DOUBLE DONATIONS – BIG GIVE – BIG CAUSE

UPDATE: We’re off! Be quick to have your donations to Invest in ME matched by the Big Give Christmas Challenge. Ends 5pm Monday 14th December.

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Your donations will be doubled by the ‘matching pot’ – a combination of Big Give Champion funds and pledges made by supporters in October. Donations (minimum £5 per donor) may be made from any country but must be made online using one of these debit/credit cards: Mastercard / Visa / Maestro / Switch / Solo / Delta / American Express.

UK tax-payers may also add Gift Aid to their donations.

Match funding is available on a first-come first served basis until 5pm on 14th December unless the matching amount is reached before then.

The Invest in ME Project to be funded by the Big Give Christmas Challenge 2015 is called ‘Intercalating Medical Students in ME Research’.

This project will attract and fund two fourth year medical students to participate in biomedical research into the neurological disease myalgic encephalomyelitis (ME) in research projects being funded by the charity.

Invest in ME have long held the view that education is a key part of the eventual discovery of the cause(s) of myalgic encephalomyelitis and have supported students over the years in many ways (see Invest in ME research and students).

The charity has had great success with their two recent intercalating fourth year medical students – Navena Navaneetharaja and Bharat Harbham. Navena spent over three months at Cornell University in New York with Professor Maureen Hanson and Bharat has been working under the guidance of Professor Angela Vincent in Oxford University.

Navena and Bharat have been of great help to the IIME-funded PhD student Daniel Vipond and all this work underpins the next phases of the charity’s strategy. So Invest in ME were pleased to announce that their Big Give project to fund two more intercalating medical students from UEA Medical School to participate in ME related research had been accepted for the Big Give Christmas Challenge.

Donate here: https://secure.thebiggive.org.uk/donation/to/6239/24084/

More about the project: https://secure.thebiggive.org.uk/projects/view/24084

Medical & PhD Students at IIMEC10 May 2015
Medical & PhD Students at IIMEC10 May 2015

Big thanks to ..

* Big Give Champion – Candis Magazine/Candis Foundation

* Big Give Pledgers – see October blog.

* Invest in ME for their vision and hard work on their Big Cause.

* Big Give Matching Donors.

* Big thanks everyone supporting this innovative and important project – please share widely to help spread the word. Let’s Do It for ME!

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1st December – Giving Tuesday

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Giving Tuesday is a growing worldwide movement. Please support our cause on this International Day of Giving. You can give your voice, your time, or a donation to Invest in ME Research. Donations to the charity may be made online, by text, by PayPal, Bank Transfer, Cheque. You can donate to a specific project or to the general Biomedical Research Fund. Every £1 counts at Invest in ME Research – the small charity run entirely by volunteers making great progress.

Gift Aid is an extra 25% of your donation from the government if you are a UK tax-payer, so please tick the Gift Aid box when you donate if this applies to you.

WAYS TO DONATE ON GIVING TUESDAY

JustTextGiving (UK)

Text APFR99

£1-£5 or £10

to 70070

You can add your name and Gift Aid if eligible by text.

JustGiving
(any country, any amount from £2)

One Day – One Pound
(text donations add to the total raised on this page).

PayPal

To: paypal@investinme.org

Bank Transfer

Bank: Lloyds TSB Eastleigh

Sorting code: 30-92-94

Account number: 02252685

Bank Transfer from outside the UK

IBAN: GB63 Loyd 3092 9402 2526 85

BIC/SWIFT: LOYDGB21209

Cheque

Send cheques payable to ‘Invest in ME’ to:

Invest in ME
PO Box 561,
Eastleigh,
Hampshire,
SO50 0GQ

(add Gift Aid to your donation with Invest in ME’s Gift Aid form)



Please help spread the word ..

Let’s Do it for ME is a patient-driven campaign launched in 2011 in support of the proposal by independent UK charity Invest in ME (Research) to establish a centre of excellence for translational research and patient care based around Norwich Research Park in East Anglia; the first of its kind in UK/Europe and in collaboration with other leading UK and international biomedical researchers.

We help to raise funds for the biomedical research into myalgic encephalomyelitis that the charity is organising and/or funding in their development of the centre of excellence. Our crowdfunding for specific ME research is the first of its kind in UK and has inspired similar projects in Europe and USA. We have now helped to raise over £600,000 for the IIME Research strategy to develop and are aiming for £1,000,000.

The current focus of the research is on the role of the immune system, including infection and autoimmunity. Two major research projects are on the role of the gut microbiome and research on B-cells leading to a UK clinical treatment trial of rituximab.

Invest in ME Research is run entirely by volunteers who either have ME or are parents and carers of ME patients. They are driving the agenda of scientific research into diagnostic tests and treatments for myalgic encephalomyelitis in UK in collaboration with international researchers of world renown.

Thank you for your support.

Let’s Do It for ME!
ldifme.org

in support of Invest in ME (Research)
investinme.org

Invest in ME International Conference & Biomedical Researchers Colloquium
investinme.eu

IIME B-cell / Rituximab Research
ukrituximabtrial.org

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One Day

A Day with a Son with M.E.

“I helped my 10 year old son to the bathroom as the crippling pain rippled through his leaded body. His lips were dry and cracked even though he had drank an ocean of water that day. His complexion had that grey alabaster look, with those deep panda markings that have become my nemesis.

As I helped him back to his room, he explains how embarrassed he feels about it all and I gently chastise him that things could be a lot worse. I quickly think of some comic element to lighten the load, and tell him of anecdotes of times I have helped his big brother and sister out. We have to take every movement real slow as he is dizzy and feeling sick. He sits at the end of the bed while I arrange the special pillow so that his head is elevated, and his sore neck is supported. I put eardrops in, to sooth his sore ears and Olbas Oil to clear his congested sinuses. There is nothing I have found that will help with his sore throat.

He would normally ask me to leave, but he is too weak and in too much pain to do so. I lay next to my son until the temperature in his legs has warmed. His body rigid with pain, I try not to think of the future because no one can say what will happen to my 10 year old son. There has been very little research done on the pathway of this disease, even though 25,000 children suffer in this way every day in England.

He has not been to school for months and he is desperately missing every aspect of life. He is jailed in our home by a dysfunctional body, crippled by M.E. Disbelieved by most medical staff not taught how to treat this long standing illness and portrayed as malingerer by politicians, with the threat of the Education Services and Social Services never very far away from my thoughts. This worry stagnates my concerns into despair. As a mother you are blamed from every angle, even by your own self. I haven’t slept properly for a couple of years now, and everyone keeps telling me to look after myself, but how do you do that, when you don’t feel safe and uncertain about the future? Which part of my life is on solid ground?

I try not to think back to the life we had, the fun of movement the joy of being a family so rudely taken from us. Just to jump in the car and go visit, have friends and family around, have a life. I have to pull from the here and now to gain the strength to make a buoyant life. There are many people out there with all sorts of illnesses and disabilities. I turn on the shower and cry it out.

I dress before he wakes and organise a day where he does not have to think. I worry about which foods his tummy will accept. I don’t put on the perfume I love to wear or deodorant because this will set off the migraine like headache, which will add to his already painful head. I cut out the Christmas decorations in the hope he will feel well enough to help. If not, I will quietly get on with it while we watch a film. I will pick a film we have seen a thousand times before, because this is all he will be able to do today. Watching a well viewed film is classed as an activity, unbelievable isn’t it?

He wants to go shopping and we have a month before Christmas. He wants to buy me two presents at the shops. Apparently I’m worth two! We have looked on line but he is determined to go out and he has even relented to using a wheelchair. We don’t have a blue badge to make our lives easier which is a shame, but we will manage. In my mind I think of taking him to eat somewhere special, of the music they put on for Christmas, the decorations, the lights, and life. For just a little while we could live. The payback of Post Exertional Malaise will be worth it? Wish us luck x”

To donate to our Movember Awareness please text MFME77 £1-£5 or £10 to 70070 or via www.justgiving.com/movember4me/

Thank you for your support.

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There is a section on paediatric myalgic encephalomyelitis in the International Consensus Primer for Medical Practitioners. Hard copies are available from Invest in ME charity as official UK distributors and it may be read online herehttp://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf

Hard Copies available from Invest in ME Charity
Hard Copies available from Invest in ME Charity

About Let’s Do It for ME Movember Awareness of men’s health – http://ldifme.org/nomenbar-for-m-e/

Prince Among Men for Invest in ME Research

Glen Prince Does Movember for  Invest in ME Research
Glen Prince Does Movember for
Invest in ME Research

Glen Prince wrote:

“I decided to do Movember properly this year, for charity rather than just for fun. I’m asking my lovely friends to please donate to research into ME, a condition much overlooked and in some countries denied….but the tide is turning little by little. Please text a donation using the code MFME77 followed by the amount
(£1-£5…or £10) to 70070. Thank you.”

The text donations add to the total raised on this JustGiving – www.justgiving.com/movember4me

Big thanks to Glen and everyone supporting Invest in ME Research!

See our Movember intro here – http://ldifme.org/nomenbar-for-m-e/