Bulletin 9

August 1999

Once again we, the trustees of CHROME, send greetings and best wishes to our participants and friends. The aim of the Bulletin, which appears twice a year, is to keep you informed of our concerns and activities.

New trustee

We are very pleased to welcome Mr Ken C Manley, who was elected on March 1st.

CHROME website

If you have access to the Internet, please note that our address has changed, and is now:

http://ds.dial.pipex.com/comcare/chrome/. or http://www.comcare.dial.pipex.com/chrome/

We plan to make the Bulletin available in this way, are looking at other ways to improve this service. Any suggestions from you, as users, would be welcome. What would you like to see? Would you like to be able to supply your own contributions included to appear on it? (These questions apply to future Bulletins as well as to the website.)

NHS meeting with voluntary sector

You may remember that Bulletin 7 contained a report by trustee Colin Parratt on a meeting at the House of Commons last year. Colin has continued to participate in meetings concerned with ME, and has given an encouraging account of a day-long one he attended on April 9th. About sixty organisations had been represented. Colin's impression was that ME was being pushed up the agenda and receiving more attention now than in the past. One of the matters that came up concerned applications for grants. Colin has already been researching possible sources of funds for some time.

Chief Medical Officer's working groups on ME/CFS

This optimism is also reflected in the work of these groups, set up last year with CHROME representation. Here again, Colin is active, and will be going to a meeting on July 16. The Chief Medical Officer, Professor Liam Donaldson, has said: "This initiative will provide us with a real opportunity to review the practical care and support for patients, carers and healthcare professionals alike." We have already responded to a request for our views and suggestions, and will keep you in touch with developments. If you are an Internet user, you may like to look up

http://www.doh.gov.uk/cfs-me.htm

--although it is possible that nothing has yet been published on this site.

Help!

Again we are appealing for volunteers from among our friends. As well as people able to assist with humble administrative chores and more interesting tasks such as the analysis of data, it would be useful (and a relief to Colin!) to have helpers able to attend meetings on CHROME's behalf.

Donation

We gratefully acknowledge receipt of a donation sent to us from the proceeds of a recent concert given by the Hanham Ladies' Choir. Needless to say, such contributions are always extremely welcome!

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

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