Bulletin 11

August 2000

First an apology. This Bulletin was compiled in August, but unfortunately at some stage of the processing the disk containing it got lost in the post. We are sorry to have kept you waiting, and hope that you have had other sources of entertainment and enlightenment in the meantime!

It is good to report that CHROME has been very active this year. We are specially grateful to our trustees Colin Parratt, who in spite of ME somehow manages to attend numerous meetings on our behalf, and Ken Manley, who co-ordinates the activities of the Research Team and has provided much of the information for the present Bulletin.

Research Team

Some of you may have seen the paper produced by CHROME in 1998 entitled 'Severe CFS/ME of Juvenile Onset,' published in the Journal of Chronic Fatigue. A similar paper has been drafted covering this time all people in the CHROME database, adults and children, and using the data provided in all questionnaires in recent years. It is too early to say when or where this might be published but consideration will be given to making some or all of the paper available on the Internet in due course.

The prose commentaries and descriptions, often extensive, provided in response to question 12 of the CHROME questionnaire are being studied to see what information can be learned or whether there are features of this illness that merit more detailed study.

Chief Medical Officer's Working Group on CFS/ME

As you may know, the Chief Medical Officer expects to receive and consider the final report in 2001. There is an official web site at www.doh.gov.uk/cfs-me.htm which gives copies of some papers etc from the Group.

CHROME and other ME charities were represented at the 'sounding board' event on June 7. Colin Parratt attended on our behalf, along with forty or fifty other ME sufferers who had been invited to establish how they were affected and how they had been treated. This was the first time such a meeting had taken place, and the proceedings will form part of the CMO's final report. It was a very worthwhile occasion, allowing many sufferers to relate their experiences and views to medical and other representatives from the DoH, NHS and elsewhere.

'The Course of Severe Chronic Fatigue in Childhood'

Some of you may have seen references to a report with this title in the Journal of the Royal Society of Medicine earlier this year, as the press apparently made much of a suggestion that the onset of CFS/ME in children often coincided with the transfer in autumn at age 11 from primary to secondary education. While this suggestion is a distortion of the report's findings, it interesting to note that among the 60+ young people included in CHROME's database there is no evidence to support this view. People, young or adult, experiencing acute onset of ME are as likely to have this in spring or winter as in autumn, though it is less common in summer, and this appears less likely at age 11 than at many other ages. Of course, the sample of people included in CHROME's database may be very different from the sample on which the report was based.

Reclaiming Tax on Donations to CHROME

A new system for reclaiming tax on donations from UK tax payers will soon be in hand. It will involve donors in filling in a very short form, so that we can then fill in our own forms.

Bequests for Medical Research

In some previous Bulletins we have drawn attention to procedures for bequeathing body parts for research into ME. As a result of current changes in this field of investigation, such bequests can no longer be accepted for the time being. We will report any developments in this situation.

Stop Press

AfME are consulting with us over their plans to concentrate on the severely affected next year - two trustees have had preliminary discussions with AFME's chief executive

secretary@chromesw6.co.uk

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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