Bulletin 10

February 2000

It seems that everyone is in a hurry, celebrating the new millennium when strictly speaking we are still in the final year of the twentieth century. Defying the trend, this Bulletin is appearing a little late. Sorry!

CHROME research team

The most exciting development to report since our last Bulletin is the setting up last September of a group of researchers who will collaborate in the task of analysing and interpreting the data we have been collecting over the years. Most of this Bulletin will be devoted to this subject. The team consists of seven people (most of them with ME themselves) with research experience and qualifications in a range of disciplines, as well as three of our Trustees.

Perhaps the most important element of this project is to assess the material our participants have provided in Section 12 of their completed questionnaires. Because this information exists in written and anecdotal form, it was realised at the outset that it would be difficult to extract usable statistical data from it. This problem is now being tackled, and progress has already been made. It should be emphasised that members of the team are working from copies of this part of the CHROME database from which all personal details have been removed, to protect the anonymity of participants. (In addition they sign confidentiality statements before being trusted with any data.)

Different areas of concern have been allotted to different sub-groups of the team. One of these sub-groups is working on the attitudes of professionals in the field. A striking feature of the response to questionnaires has been the large number of very negative accounts of the way those diagnosed with ME have been treated by medical personnel at all levels. This is not, of course, a matter of deliberate callousness. The problem is that too little is known about ME, and that what reliable knowledge exists is not yet widely enough diffused among professionals. Clearly, where professionally qualified practitioners have two opposing attitudes to the correct treatment of the illness, at least one of these attitudes must be in need of revision! It is hoped that the information gleaned through painstaking analysis of the material on our database will make a substantial contribution to the understanding of the long-term development of ME and of the best ways of treating it.

Although this is probably the area of research that will arouse the strongest emotional response in our readers, other lines of investigation are no less important. Some members of the team are planning to look for any demographic patterns, and to consider whether changes in the level of illness might be in any way related to the services provided in different geographical areas. These are known to vary widely in quality. It is also hoped that the possible influence of organo-phosphates will be investigated.

In fact, one of the main challenges will be to recognise whatever patterns appear to be present in the very considerable body of data assembled by the CHROME project, and to establish the significance of such patterns. Work is already in progress in this area.

Chief Medical Officer's working groups

As already reported in Bulletin 9, CHROME is actively involved in the deliberations of these all-party groups. Trustee Colin Parratt, who is also a member of our research team, has been very busy attending meetings and reporting back on what has been happening. It is an encouraging fact that both the general public and the government, as represented by the activities of the Chief Medical Officer, are now far more aware of the issues surrounding ME than they were when CHROME was first established. We will try to keep readers informed on progress in this area in the next Bulletin.

Change in CHROME e-mail address

We have a new e-mail address, effective immediately:
secretary@chromesw6.co.uk

Also our phone number has been updated, along with all other London numbers, to 0207 736 3511

Founder and Chair: Dr Chris Richards
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

CHROME,
3 Britannia Road, London SW6 2HJ
phone & fax: 0207 736 3511
email: secretary@chromesw6.co.uk

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