Bulletin 22

March 2006

We reported in earlier bulletins that CHROME has been in discussion with the PRIME project over ways that we could co-operate, and in particular how our data could be of value to PRIME’s objectives and how PRIME could further CHROME’s aim of giving access to researchers to information about the progress of the condition over years in some of the most severely affected patients,

 

The main PRIME aim is to develop an accessible ‘patient experience database’ for researchers and clinicians to use in their research in ME/CFS.  They have conducted 40 interviews with people with ME/CFS and this provides the starting point of this database. More detail about PRIME’s methods can be found on their web page (www.prime-cfs.org ) and in the enclosed leaflet.

CHROME has collected a remarkable bank of data provided, at no small cost - both physical and mental, by our participants over many years detailing the experiences of people severely affected by ME/CFS and we have always believed that this unique information about the progress of symptoms and disabilities would allow researchers to see more of the roots of the condition than has been possible before.

The principal medium by which PRIME will communicate with clinicians and researchers will be the Internet. We have therefore provisionally agreed with PRIME that a substantial amount of CHROME’s data (with all identifying information removed) plus various analyses of it will be made available via their web site, which will also hold data obtained from other sources.  This will mean that now at last the data you have all so laboriously provided over the years for the CHROME database can be made easily available for reference to those who are looking for the causes and cures of this distressing condition.   The CHROME data on the PRIME web page will comprise both quantitative data – primarily the severity values given by participants against the many symptoms and disabilities in the questionnaires – and qualitative data – the text answers given in answer to some other questions, especially the final “Any other comments” page. Here, many of you have generously provided considerable background information on the illness and how it has affected you. Analyses, from earlier research, will include a variety of charts and reports relating to many or all participants.

 

The reason Chris decided to set about getting all this information together in the first place was in the belief that if it was studied it might provide some clues to causes and cures.  We are sure, therefore, that you will be as pleased as the trustees with the plans to make it more accessible to researchers.  A set of information about levels of symptoms and disabilities could not possibly indicate the identity of the participant  and we shall be asking you to give your permission for a carefully anonymised version of your other written data – in particular your response to Section 12 -   to appear on the PRIME web site.  Please don’t hesitate to contact us with your questions if you need more explanations about how your anonymity will be preserved.

 

CHROME Trustees

Ray Gibbons BSc, Inge Heinrich PhD MSc, Geoffrey Jackson PhD, Ken Manley, Colin Parratt BSc,

Chris Richards PhD, Mary Simmonds, Rev Ken Street MA

Advisors

Professor Peter O Behan MD DSc FACP FRCP,  Dr E G Dowsett  MB ChB Dip Bact,  Dr Derek Pheby BSc MBBS MPhil LL.M MFPHM,

 Dr Layinka Swinburne BSc MB ChB FRCP FRCPath