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.

Great News - £200k Pledge to IiME for UK Rituximab Trial!

                             Thanks so much to Invest in ME and all who support their wonderful work.

The following statement is on Invest in ME website (click here)

IiME/UCL Rituximab Clinical Trial Status Update  One Event Can Change Everything September 2013 When Invest in ME announced in June that we were planning a UK trial of rituximab for ME there was a great deal of interest raised. The rituximab trial follows the exciting work which has been, and is being performed in Norway by the Haukeland University hospital researchers Professor Olav Mella and Dr Oystein Fluge. Since these excellent Norwegian researchers came to present at the Invest in ME conferences in 2011 we have followed their progress, and invited them back every year for our BRMEC researchers meetings and IIMEC* conferences. The research work has been backed up by impressive and dedicated patient advocacy by the Norwegian ME Forening which has raised the profile of ME in Norway and throughout the world. Their tireless work has encouraged IiME. The more recent success of the ME and You campaign to raise funds for the Norwegian research has created real hope amongst patients. At the IIMEC7 conference IiME announced our intention to work toward establishing a clinical trial of rituximab in UK [1]. In updates published through July and August IiME has stated that all that is required for the trial to proceed is the funding. In the spirit of cooperation we have stated that support for the trial was welcome and that IiME would acknowledge all such support. Our supporters have risen to the occasion and valiantly supported the IiME/UCL trial with wonderful enthusiasm. The imaginative Let’s Do It For ME campaign has continued to produce ideas to raise funds and awareness and The MATRIX is an example of a unique method of achieving both. We have had donations from around the world, ranging from £1 to £3,000. We have had a very generous donation of £25,000 from a foundation and this has allowed the funds raised to grow to £59,000 in a very short space of time. We have also had fantastic moral support from a great many. As such, IiME and our supporters have managed to initiate and organise something which many thought was not possible. IiME made it clear from the beginning that we welcomed support for the IiME/UCL clinical trial from other organisations. Our objective is to ensure that a clinical trial of rituximab is allowed to be performed by the best researchers possible and to ensure that this trial makes a valuable contribution to the collective research pool. This is why we have been keen from the beginning, and since our inception as a charity, to initiate collaboration with other like-minded international charities and organisations, and build collaborations between ME researchers across continents. We believe in achieving results by the most direct method, where possible. For IiME the issue of making rapid progress in ME research is important, it is personal. The need is here - the need is now. We arranged a specific web site which has been set up to inform on all aspects of the UK rituximab trial. This is at - www.ukrituximabtrial.org and we reiterated the current status [2] We have the facilities available. We have the researchers available. We have the best expertise possible available. We have the means of fundraising for this trial available (see The MATRIX [3] ) and we have a campaign to raise funds We have emphasised that the only remaining element required was funding We have reached this position thanks to the vision, efforts and help from Professor Edwards, Dr Cambridge, UCL and our supporters. Thanks to the amazing efforts of our supporters we have been able to agree already to initiate a preliminary study on B-cells at UCL. Professor Edwards will shortly visit Bergen – a trip arranged by IiME as part of our collaborative attempts to unite researchers and build on experience. We can now announce that IiME have been given a pledge of £200,000 from a foundation to supplement the amount we have raised already. This would bring our rituximab fund to almost £260,000 – that is over two-thirds of the requirement for the clinical trial to proceed. The foundation has two conditions to this pledge That IiME continue to be the lead patient organisation steering this trial That IiME continue to raise funds for the remaining £90,000 that is required for the full trial to proceed  The trustees of IiME have accepted these conditions willingly. We are thankful and grateful for this extraordinarily generous offer from the donating foundation. It is an amazing gesture from compassionate and caring people who want to make a difference. It allows the hopes of many patients to become a reality – allows a vision to be maintained that there is a future for ME patients and that we, patients and families, can make a difference. We have communicated this to the UCL team with whom we are working to make this trial a reality. We are now distributing this information to our supporters. There were many who doubted that IiME and our supporters could achieve this. Though we knew this would be a daunting task we have never doubted it was possible. We continue our efforts to raise the remaining funds. To our supporters who have been with us since the beginning and everyone who has contributed in so many ways to this trial we want you to know this is your result. It is what you have achieved. It is what we have achieved together. We thank all those who are supporting this trial and we will continue to provide information on the status of the trial as we progress. We continue to welcome support. Please contact IiME directly if you or your organisation would like to assist or contribute.  If anyone would like to ask any questions about the UK rituximab trial then please use the Contact form on the rituximab web site [4]. A status is available [5]. With this trial we can take a huge leap forward in ME research. If you are also interested in the other research projects that Invest in ME is  organising and/or funding please see our main website and free newsletter [6]. Let’s Do Research! Let’s Do It For ME!Thank You. References: 1 http://www.investinme.org/Rituximab%20news-Aug13%2001.htm 2 http://www.ukrituximabtrial.org/IIMEUKRT%20Summary.htm 3 http://www.ukrituximabtrial.org/IIMEUKRT%20Matrix.htm 4 http://www.ukrituximabtrial.org/IIMEUKRT%20Contact.htm 5 http://www.ukrituximabtrial.org/IIMEUKRT%20Summary.htm 6 http://bit.ly/1f7k9y7  Invest in ME                                            September 2013 Further Reading 1. Invest in ME Research 2. http://www.investinme.org/IIME-Newslet-1309-01%20BRMEC4.htm Support ME Awareness - Invest in ME

September 2013