Bulletin 21
October 2005
Greetings again! A short Bulletin this time, but it
contains important information supplied by Ken Manley, the trustee who
runs our research group. The CHROME database continues to be enlarged
and updated, and these notes will show that good use is being made of
it. Otherwise there is nothing to report.
ME Alliance
The ME Alliance campaign for early diagnosis, launched in ME Awareness
week in May and supported by CHROME, went very well, receiving good
publicity and an opportunity to raise the awareness of many problems
with the medical community and with government. We still have a few
copies of the Alliance report for any who would like to see it.
CHROME has chosen to become an Associate member of the Alliance as we
are keen to continue to support the Alliance but do not have resources
comparable to other member charities to become actively involved in
campaigning.
PRIME
CHROME is continuing productive discussions with the PRIME (Partnership
for Research in CFS and ME) project to explore how the copious and
unique data provided by our participants might be exploited by PRIME.
Analyses of CHROME data
We have received the first, very thorough and original, draft of a
report by Vladimir Koliadin, a Ukrainian statistician who is a friend
of a CHROME trustee. The report provides, inter alia, novel ways of
visualising our very complex data with graphical techniques. We are
discussing with Mr Koliadin how the report might be developed further.
We also have the report of an MSc student, now resident in South Africa
and a “distant student” of the London School of Hygiene and Tropical
Medicine, analysing the effect of exercise on people severely affected
by ME. The report is, of course, not for publication but could
stimulate further investigation of this controversial area of treatment.
“Any other comments”
Following the item in Bulletin 20 we are very grateful that we have a
volunteer (a doctor with ME) to produce an article, developed
from some of the detailed and often very moving information provided by
participants and their carers in the “any other comments” section of
questionnaires. This article will be aimed at the medical profession.
Comments and additional offers to help work on our data are still
welcome!
