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.

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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.

Rosa's Wristbands

Fancy Design

These lovely blue ME Awareness wristbands are made of blue baby wool tied with ribbon and were crocheted by Rosalind Amor and donated by her to Invest in ME charity to raise funds for the UK Centre. Rosa says:

"I am now a year older than the age Alison Hunter was when she died of ME in 1996. I am 20 years old. Alison Hunter had suffered, horrendously, from ME for 10 years prior to her death. Her symptoms included seizures, paralysis, gastrointestinal paresis, heart damage, massive ulceration to her throat, horrendous neurological problems and overwhelming infection.

I have had ME for 12 years though fortunately not as badly as Alison Hunter. My ME seemed to be triggered by a virus of the gut when I was 8 years old. However, the exact cause of my many unpleasant symptoms (pain, nausea, partial paralysis, *brain fog*, extreme tiredness and lack of stamina, hypersensitivity) was unknown to me and my family until last year when some Mitochondria tests gave a glimpse of at least part of what is going wrong. You can find out more about me via my blog.

Simple Design

I have been crocheting wristbands to raise awareness and funds for the new centre proposed by Invest in ME Charity. There are 2 different designs and they are £2:50 each. I think this new centre is crucial if the ME community wants to move forward, towards better understanding and care for people like Alison Hunter and myself.  You can find out more about Alison Hunter here.

So please buy my wristbands to raise awareness of the suffering endured by teenagers with ME and funds to found a centre to provide a better future for them.

Please order by emailing info@investinme.org

Thank you for buying them."

Many thanks and very best wishes to Rosa.

You can visit Rosa's Facebook group - Let's do it for ME wristbands brigade - to post any photos of you wearing your wristband.  UPDATE: You can now also find Rosa's wristbands on the Make ME Crafts Facebook page.

The Alison Hunter Memorial Foundation kindly sponsored two of the annual Invest in ME International Conferences on biomedical research by donating toward production costs of the DVD of the 4th conference in 2009 and contributing toward the cost of the 5th Invest in ME conference in 2010.

UPDATE: The 7th IIMEC was held in London on 1st June 2012 and was titled: Building a Future for Research into ME Clinical and Research Updates in Myalgic Encephalomyelitis.  A new Clinical Autoimmunity Working Group, initiated by collaboration between Invest in ME, The Alison Hunter Memorial Foundation, and researchers from the University of East Anglia and Bond University, met for the first time at the end of May.  We, as ME patients, are very appreciative of the dedication and hard work of all involved in this exciting new development and hopeful of the progress that these collaborative working arrangements will achieve.

On 9th July Rosa said,

"We raised £104.72 during ME awareness month with collecting tins. In spite of being bedridden with repeated vomiting:) 

Haven't made any wristbands though, hands too weak.

Have to buy Jon Watson's (Make ME Crafts) for time being.

I so wish we could get this centre running, I need it!"

So come on everyone - let's do it for Rosa and others like her - Let's do it for ME!

(for options to simply donate to the research now)