Possibly the 2 Most Important Research Projects for ME in the UK

Within this project we have also been able to sponsor an intercalating 4th year medical student at UEA to perform a one year MsC degree within this project and to work alongside the PhD student.

This allows us to increase the base of experience and research opportunity, as was envisaged with our original proposal for a centre of excellence for ME.

Another complementary project is going to look further at Autoimmunity and ME/CFS with the ME consultant who is working with UEA, Dr Amolak Bansal, to perform a detailed analysis of antibodies binding the hypothalamus. To enable this project to go ahead an additional funding has been pledged by our European ME Alliance partners the Irish ME Trust).

This is not the end of the story at all though. We continue to fund for more gut microbiota-related research which will follow on. Our JustGiving page is at http://www.justgiving.com/investinm-e and we welcome help in distributing knowledge of these crucial projects.

You can read more of the rituximab research at our dedicated web site at this link - www.ukrituximabtrial.com

See also - The Matrix - http://www.ukrituximabtrial.org/IIMEUKRT%20Matrix.htm

The idea of the Matrix is an idea to encourage individuals, organisations, teams and companies to take a slot to aim to raise up to £1000 each. 100x £1000 events would raise £100,000 and we are pleased to see a many slots reaching their target - but many more are needed.

If you have an idea which can encourage a group, a community a business or a wealthy philanthropist and wish to take a slot then please contact us at info@investinme.org.

FAQs on the rituximab clinical trial

We receive questions from patients wishing to take part in the trial which is understandable as ME patients have so few options for treatments and they are generally willing to be part of any research initiatives. 

However, the charity, as funders, can have no influence on the selection process. This will be the responsibility of the research team and consultants. 

The trial will be aiming to find likely responders based on the initial B cell study. The clinical trial protocol will not be designed until results from the preliminary B cell study start to come in and the patients will be selected from a cohort of patients who took part in the initial B cell study. The consultants in charge of patient selection for both parts of this trial will be those working at the Epsom and St Helier and UCLH NHS CFS clinics. More details and answers are available on the IiME web site which has been created for the project - http://www.ukrituximabtrial.org/IIMEUKRT%20FAQ.htm 

News of the project is available in the news page at http://www.ukrituximabtrial.org/IIMEUKRT%20News.htm

World Events 

The Institute of Medicine (IOM) contract -a new ME/CFS definition 

One of the most talked about topics recently has been the US government health services contacting the Institute of Medicine (IOM) to produce a new definition for ME/CFS. 

The cost of this contract is in the region of $1million! 

Over 50 ME/CFS researchers and clinicians wrote against this contract asking for adoption of the Canadian Consensus Criteria. 

Invest in ME wrote to Secretary Sebelius in support of the many researchers/clinicians and patients advocates who signed up to support these professionals  [http://www.investinme.org/IIME%20Statement%202013-11-01.htm].  

Recordings of the public comments made by many notable and well spoken US advocates can be viewed here http://www.youtube.com/user/instituteofmedicine/videos. 

Everyone's message was more or less the same asking for the contract to be cancelled.  A British lawyer Valerie Eliot- Smith also blogs about the importance of this debate and other topical issues here - http://tinyurl.com/l9lwvl5   

FDA "The Voice of the Patient ' document 

This document, produced by the FDA from the meetings held on 25th April 2013, is well worth reading and keeping for future reference. 

It is a series of reports from the U.S. Food and Drug Administration's (FDA's) Patient-Focused Drug Development Initiative "The April 25 Patient-Focused Drug Development meeting gave FDA the opportunity to hear directly from patients, patient caretakers, and other patient representatives about their experiences with this debilitating condition. 

The discussion focused on two key topics: 

(1) disease symptoms and daily impacts that matter most to patients 

and 

(2) patients' perspectives on current approaches to treating CFS and ME. The questions for discussion (Appendix 1) were published in a Federal Register notice that announced the meeting."  http://www.fda.gov/downloads/ForIndustry/UserFees/PrescriptionDrugUserFee/UCM368806.pdf 

IACFS/ME Conference 

The IACFS/ME 11th Biennial International Research and Clinical Conference to be held in San Francisco, California, USA, March 20-23, 2014. More information here - http://www.iacfsme.org

An extreme way of raising awareness of ME  and much-needed funding for biomedical research into ME has now been set in motion by Mike Shepherd. Mike is taking on the North Pole Marathon.