Bulletin 24
February 2007
From Chris and Ray
To
those of you who are waiting patiently for your next questionnaire
Chris and
Ray must apologise. We have moved down
to Hove where Chris has a sea view.
This has meant that all our activities have had to be reorganised.
Ray still spends what time she can in London
and is gradually sorting everything out.
We hope that you will receive your next questionnaire shortly.
How much longer it will be sensible to go on
collecting data now that PRIME is providing new opportunities – see
below
- we are not sure. Your views would be
appreciated.
PRIME
Many thanks to
all of you who were able to
return the reply slip provided with Bulletin 23 last Autumn. We have so
far
received almost 180 replies and of these 168 participants have agreed
to have
their data, when anonymised, made available via the PRIME web site for
use by
researchers and clinicians. If you have not yet replied (a reply-paid
envelope
was provided with Bulletin 23) please do so or, if you are unsure how
to reply,
let us know why.
The work of anonymising and indexing the text
data for those who have agreed is progressing. It is hoped that this
will be
available for you to see on-line, if you have access to the Internet,
by May
this year before it is made generally available within the PRIME
Patient
Experience Database alongside the experiences provided by others with
ME.
The PRIME project includes providing a “diary”
facility which will enable patients to keep a record of their
experiences and
share them (anonymously) with users of the PRIME website. The functions
being
developed on the site contain a “tracking” process which enables site
administrators or researchers to anonymise and categorise the data
whilst
allowing the contributor to retain overall control of whether and when
to share
each diary entry. Much of the work of the next phase of PRIME will be
around
how to augment this function to provide a useful tool for helping
people with
ME/CFS to develop an understanding and insight into their condition.
This might
be particularly attractive to CHROME participants who have access,
perhaps via
carers, to the internet especially when we cease collecting data as
must happen
sometime.
A NOTE FROM OUR TREASURER
Copies of the audited
accounts for the year ended 31 August 2006 are available on request,
either by
sending an e-mail to ‘kenneth@20ash88.freeserve.co.uk’ or by ordinary
post for
a paper copy to Rev Ken Street at 20 Ashfield Road, Davenport,
Stockport SK3
8UD with your address.
In summary, during the year
expenses of £1918
had exceeded income of £690 and at the year end a total of
£9871 was available
for the work of the charity being a reduction of £1227 over the
year.
At their
meeting on 21 November 2006 the
Trustees agreed to set aside a substantial portion of the balance as a
donation, if requested, to assist in placing our research data on the
PRIME
site – details of which are in this Bulletin. Once that has been done
the
Trustees will be considering the use of the remaining funds and the
future
purposes of CHROME.
