Bulletin 8
February 1999
Greetings from CHROME trustees to our participants and friends. Once
again we have a number of matters to report to you, as well as some
requests.
First of all we are delighted to report a number of generous
contributions to our funds.
Rest-a-thon
CHROME participant Siobhan Pritchard of Burton upon Trent organised a
"Rest-a-thon", in which the following sums were raised:
C Dyson £115.00 - M Gobbett 154.80 - K Howard 40.50 - J
Kimbling 52.00 - S Pritchard 42.50 - R Proctor 30.00 - A Simon 156.00 -
J Taylor 117.50 - N Watters 27.50 - Z Williams 30.00
TOTAL £765.80
Well done, and thanks to Siobhan, all those who took part, and
their sponsors.
Charity ball
In another magnificent effort, Carol Cameron and a group of friends of
Jackie Crocker, a young participant in Devon, organised a fund-raising
ball. This produced no less than £3,035 for CHROME!
Donations in Lieu of flowers
On the death of Miss Elsie Jewell, great aunt of Jackie Crocker,
donations for CHROME were requested instead of flowers. CHROME received
£228.50--
Birthday presents
-- And yet another participant, who asked for donations to CHROME in
lieu of birthday and Christmas presents, was able to add around
£200 to our funds.
CHROME's first academic paper
Mention was made in the last bulletin of the first write-up of the data
for an academic journal. The paper, "CFS/ME of Juvenile Onset – A
Report of the CHROME Database" appeared in the autumn in the Journal of
Chronic Fatigue Syndrome, Vol. 4 (4) 1998.
Annual accounts
The audited accounts for the period 1.9.97 to 31.8.98 show income of
£2,860 and expenditure of £3,111. The good news is that all
the donations reported above were received since August.
Donations
In most cases, people making donations will naturally require a
receipt. Please make sure that they provide an address we can send it
to. In the context of donations and bequests from participants and
friends, we would like to stress that our reason for publishing
information about these is not to make others uneasy if unable or
unwilling to contribute, but as a record of our gratitude on everyone's
behalf. We would also like to take this opportunity of mentioning a
rather delicate matter, again with no thought of exerting pressure on
anyone. Sometimes people ask what steps should be taken if they wish to
leave body-parts for medical research into ME. We can provide this
information for anyone interested.
Phone messages
Our Secretary and Treasurer have both asked that phone messages should
be spoken very clearly, with important details like telephone numbers
repeated. Thank you.
Families of children
If any families of the children participating in the project would find
it helpful to be put in touch with each other, they are invited to
complete the slip sent out with this Bulletin so that their addresses
can be circulated.
Statisticians and computer-literate volunteers
We are in urgent need of a statistician (ideally but not necessarily a
medical statistician) or other volunteer familiar with the mysteries of
computers to help with processing the confidential information held on
our database.
Chief Medical Officer's working groups on ME
The last Bulletin mentioned that a working group on ME (actually three
groups with distinct functions) was being set up by the Health Service
Directorate. We are pleased to announce that CHROME has been given
official representation on the Reference Group in the person of our
Chair, Chris Richards. This group is made up of about forty members,
some individuals and some organisations (including patients'
organisations). Its role will be to comment on papers concerning the
illness, and its first meeting will be in June.
