8 December 2012

Rosa's 21st Birthday Appeal - December Update

Rosalind Amor has been an enthusiastic supporter of the Let's do it for ME campaign since its launch in the summer of 2011, as one of the first members of the online planning group and also of the Make ME Crafts team, as in spite of severe illness, Rosa crochets soft wool blue awareness wristbands when able to for Invest in ME. We wrote about Rosa's Wristbands in March 2012 and she raised over £100 for ME Awareness Month in May but by July her hands had become too weak to crochet. Following a decline in health, Rosa spent most of August and September in hospital, transferring to a Nursing Home where she is being fed by a naso-jejunum tube.

Rosa turned 21 on 9th November and, in her usual inimitable fashion, she had a very clear idea as to how she wanted to mark this significant birthday. She planned to use her 21st as an appeal for our campaign to raise funds for biomedical ME research at the centre of excellence in Norwich proposed by Invest in ME. Rather than sending her cards and presents, Rosa asked her family and friends if they would raise awareness and money for the cause which is so dear to her heart. She had said in July, “I so wish we could get this centre running, I need it!"

For the occasion, Rosa's mother Julia prepared party bags containing a blue balloon, a LDIFME badge, ME awareness poster, leaflets and a card in which Rosa tells her story.   The staff at the nursing home joined in with a pyjama day with all proceeds to Rosa's appeal and thanks to the support and generosity of a number of people, over £1600 was raised on the Just Giving page including Gift Aid. Goodwill messages were posted across the social networking sites and some people used Rosa's photo as their profile picture for the day.  Julia said, “Rosa's Appeal has surpassed all our expectations. Check out the link to see her amazing total and all the different people who have supported her. We are so grateful to everyone.”

Invest in ME is running an advertisement in London Business Matters (LBM) for December and January, reaching 18000 people in business in London in time for Christmas and New Year. The striking ad highlights one of the research projects outlined in the proposal for the patient examination and biomedical research centre, to determine whether changes in gut microbiota contribute to ME.  First placed in October, this time the ad is supplemented with an "editorial" piece about ME and severe ME, featuring Rosa.  Invest in ME wrote on their Facebook group:

"We would like to thank Rosa for her recent appeal and Julia for agreeing to let us use Rosa's story to raise awareness.

We wish to thank all of those making huge efforts to support us and enable biomedical research into ME and thereby increasing awareness of ME.

As we have seen from recent news in Norway (no public funding granted for a Phase III trial of the promising drug Rituximab in ME patients) we, the patients and carers, will have to take control of this state of affairs and make research happen.

This is the reasoning behind our Norwich proposal - see

We are nearing our target to initiate our first project.

We will continue to progress and facilitate collaborations between researchers.

With other members of the European ME Alliance we will work together to make ME a properly researched and treated disease.

Let's Do It For ME."

Please see links for the ad below*

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.

How you can help to celebrate Rosa's 21st:

• Put up an awareness poster where lots of people will see it
• Wear the Let's do it for ME badge

How to donate:

• Online to Rosa's Justgiving Page by visiting www.justgiving.com/Rosa21

• Send a cheque payable to Invest in ME to:
Invest in ME,
PO Box 561
SO50 0GQ
Please write 'Rosa's Appeal' on the back

• Make a direct payment to Invest in ME -
Bank: Lloyds TSB Eastleigh
Sort code 30-92-94
Account number: 02252685
Please mark your donation 'Rosa's Appeal'

To find out more about the Let's do it for ME campaign and other ways to help visit ldifme.org

To find out more about Invest in ME visit www.investinme.org

To read about Rosa's Wristbands http://blog.ldifme.org/2012/03/rosas-wristbands.html

You can read more of Rosa's experiences in her own words and including private lab tests that showed mitochondrial dysfunction on her blog  www.rosalindamorspaceofameguineapig.blogspot.com

Sending our love and every good wish to Rosa for her 21st birthday from the team at Let's do it for ME!

Thank-you for your support.

(click here for Rosa's 21st Birthday Appeal in pdf).

* Links for the ad on Invest in ME website here - :http://www.investinme.org/IIME-Newslet-Dec12-02.htm
* The Invest in ME ad is on page 51 here - http://www.londonbusinessmatters.co.uk/archive/2012-12/#/50/

* Please especially read the special supplement on page 40 here - http://www.londonbusinessmatters.co.uk/archive/2012-12/#/40/

* The jpeg of the article here - http://www.investinme.org/Documents/ME%20Awareness/LBM%20Dec2012/Invest-in-ME-Rosa-2a.jpg

* The latest ad spans December and January. The ad in Coventry & Warickshire covered November/December. The previous LBM ad was in October - so it will have had 4 months of coverage - http://www.investinme.org/medianewspapers-2012-10-01.htm

Let's do it for ME is a patient driven campaign in support of Invest in ME's proposal to establish the first UK centre of excellence dedicated to translational biomedical ME research and patient care.  All funds raised are for the research.  Please see our main website for full information and to see how you may become involved in helping to frame a future for proper recognition and treatment of this disease.

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

For other news of our campaign please see December Updates