IiME/UCL Rituximab Trial - News May 2014

Click here to read on IiME website - IiME/UCL Rituximab Trial - News May 2014

The Invest in ME/UCL Rituximab Clinical TrialResearch Fund

Invest in ME are pleased to announce that our research fund total has now reached £300,000.

May 2014

This has been an incredible endeavour achieved by Invest in ME's supporters.

It may be useful to go through some of the events which placed us in this current situation -

• The charity stated at our 2012 international conference in London that we wished to initiate a clinical trial of the rituximab drug for ME.

• We contacted many academic institutions and made our commitment known and invited researchers to the Biomedical Research into ME Colloquium (BRMEC3) in May 2013, organised by Invest in ME, in order to encourage requests to perform this work.
  At the colloquium Dr Jo Cambridge from UCL was invited by the charity to attend and present her research to the 40 researchers from nine countries who had gathered in London for the meeting. We felt it important to get the best advice possible to help with this area of ME research. Dr Cambridge added an enormous amount to the meeting – followed by a sincere and positive approach to progressing research.

• The following day Professor Jonathan Edwards of UCL attended the 8th Invest in ME International ME Conference. Professor Edwards agreed to become our advisor and issued this statement regarding the project 

• Early on the charity welcomed support from everyone. We invited everyone to get behind this UK rituximab study and support us. We welcomed contributions from other organisations and companies and individuals. We stated that those who felt they needed to review our proposal further may then organise their own peer review process as they deemed necessary. 
  Several organisations have supported us and some have contributed funds - see our supporters page  
   
  We have always made it clear that the charity is interested in the quickest, the best and the most efficient and cost-effective way to make progress. This need for high-quality biomedical research into ME is long overdue and the need is urgent, and it is personal. We have agreed with our advisors that any organisation wishing to support the trial will come to IiME and IiME will provide necessary information. We have agreed to providing information to any organisation supporting us at regular intervals. So it is a simple matter for any organisation or individual who wishes to support this trial can contact IiME (see below).

• IiME set up the innovative MATRIX - to generate more campaigns for funding a trial 

• The dedicated web site was created for this trial - www.ukrituximabtrial.org
• Frequently Asked Questions (FAQs) have been set up to answer questions  
• Posters were created to publicise the venture by IiME and UCL 
• A summary document was produced for the trial 
  
  
• We announced that IiME had been given a pledge of £200,000 from a foundation to supplement the amount we have raised already. This generous act astounded all of us. In March we were happy to be given permission to announce that the donation was made in memory of the late Roger Hendrie who sadly passed away in March 2013.
  The foundation had 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 funds 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.
  
  
• The charity has continued to have meetings with the UCL team during the course of the last nine months.
• The preliminary trial was set up and was peer reviewed by the charity's international reviewers 

• The study has passed the ethical approval stage recently and the internal UCL approval stage.

• IiME are signing a contract shortly for this.
  
  
  What Next?
  Thanks to an amazing effort across many countries by patients, carers, relatives and friends - and from who were previously unconnected to our cause but are now good friends - the Biomedical Research Fund for the IiME/UCL UK rituximab clinical trial has now reached £300,000.
  
  
  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 support us. 
  If anyone would like to ask any questions about the UK rituximab trial then please use the Contact form on the rituximab web site - click here.
  Our team, our advisors and an international group of biomedical researchers will be at the Invest in ME Biomedical Research into ME Colloquium in London in May 2014.
  We need to continue to raise funding for this study so we urge all our supporters, and others who wish to have a UK rituximab trial or wish to advance biomedical research into ME, to continue to raise awareness and interest from as many sources as possible and support us in this venture.
  
  
  The UK rituximab study has been initiated by IiME and UCL.
  The preliminary B-cell study will commence shortly.
  The best research team possible to undertake this trial is able to perform this.
  We need now simply to fund this.
  
  
  See tribute to our supporters - an international event.
  
  
  
  
  
  Let’s Do Research! Let’s Do It For ME!
  
   
  
  
  Click here to see/download our posters for the IIME/UCL rituximab trial.
   
  
  

Read this May 2014 Newsletter on Invest in ME Website

 

ME Awareness May 2014!

Quick one-stop shop post for links to the various events organised by Invest in ME or their supporters - spoilt for choice with something to suit all ages, tastes and abilities, so we hope you will join in and please let us know if there are any missing links or if you'd like a link added as we'll try to keep the post updated. 

9th Invest in ME conference events - IIMEC9 - are any of your health professionals going?  There is a discounted rate for medics referred by a local support group and a leaflet to download or print.

May 1st - 1 Day - £1 - 1st of the month is the day to donate just £1 to 1st class IiME research!

LIGHT UP THE NIGHT FOR ME on May 12th - can you help IiME have any public buildings in your country or area lit up blue for ME Awareness on May 12th?  Can you light your room or home blue?
International Event Page.

Turn your body blue for M.E - anyone can take part - post a photo of yourself or a body part in blue and donate to Julieann's JustGiving page. 

Selfie Facebook Fundraiser May 12th - based on the idea for cancer awareness and again, anyone can take part - post pictures of yourself on your social networking sites and donate to Clare's JustGiving page. 

Sewber Moments Online Fundraising Raffle - winners to be announced on May 12th

Sarah Mozer's Online Charity Fundraising Raffle - winners to be announced on 12th May. 

The Big Sleep for ME - now in its 3rd year and going global!  Including .. 

Where's Bear competition May 11th-17th

Poetry Competition - deadline for entries May 31st

T-shirt design competition - deadline for entries May 31st

The Princesses and M.E - their first year and what a team! Fancy being a princess for a day?

The Zzz...Factor for IiME Comedy Club - great entertainment in the comfort of your own home.

Walk for ME in its second year with the first walk for IiME already completed.

Walk for ME Isle of Man - wonderful team new on board for 2014 walking this coming weekend.

Mass Observation Diary on May 12th - for the general public in UK but an ideal opportunity to raise ME Awareness given the date. 

#May12BlogBomb - if you are a blogger or would like to write a guest blog for May 12th.

Light a Candle to Remember M.E. A poignant event created on behalf our lovely Rosa Amor.

A Vigil for International Awareness Day on May 12th in aid of Invest in ME Research, and Dr. Ian Lipkin's appeal (rituximab and microbiome research projects).

The above are group events that anyone may take part in. Items that Seren manages to crochet over 12 hours on the 8th May will be available for sale so you may wish to keep an eye on her Facebook page -Seren's 12hr Crochet Marathon for Invest in M.E. - She is hoping to reach her £1000 target for IiME.

Have we missed any?  Let us know!

Thank you for taking part or supporting the above.

To get in gear for May ME Awareness - visit our Shop for Biomedical ME Research - you can save £5 orders above £30 on the range of products in all the online Spreadshirt shops from 2nd to 8th May - ideal timing! Voucher code: MAY14 (cannot be used with other codes).  

Not forgetting Mama Chill's dizzyjam ME Awareness ranges with all proceeds to Invest in ME.

Click here for a variety of other ME Awareness materials.

Ready for May ME Awareness?  Let's do it for ME!

Thank you for your support. 

*Let's do it for ME! is a campaign to help raise awareness of the work of independent UK charity Invest in ME (Research) and funds for the biomedical research into myalgic encephalomyelitis that the charity is organising and/or funding. Invest in ME is run entirely by unpaid volunteers who either have ME or are parents and carers of ME patients. They are driving the agenda of scientific biomedical research into diagnostic tests and treatments for myalgic encephomyelitis in UK in collaboration with international researchers of world renown - 2014 will be an exciting year for progress in M.E. research - you can help*

Let's do it for ME!

ldifme.org 

Invest in ME (Research)

investinme.org

Invest in ME International Biomedical Research Conference (IIMEC)

investinme.eu

IiME/UCL/UK rituximab trial 

ukrituximabtrial.org

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