M.E.
AWARENESS WEEK 9th TO 13th MAY 2005
CHROME is a signatory to The ME Alliance’s statement:
Primary Objective
- To heighten awareness among professionals of the importance
of early diagnosis (within 6 months adults, 3 months children)
- To convey public messages highlighting viral factors in the
cause of M.E.
Secondary Objectives
- To press government to provide funds and MRC to proactively
commission research into the diagnosis of M.E.
- Actively involve Groups and Alliance members in a unified
campaign
- Heighten awareness of the patient organisations and support
they provide
A report highlighting the importance of early diagnosis will be
launched at an event in London on May 12th. We will support this
with media activity and a call on local groups and individual members
to support our campaign.
PRIME
CHROME is also supporting the new PRIME project (see www.prime-cfs.org ) is a
collaboration
between patients, carers, researchers and service providers commited to
improving our understanding of ME/CFS. With the help of the Royal
College of Nursing, PRIME is collecting information from people living
with, or recovered from, ME/CFS, and is also involving clinicians who
provide specialist services and researchers interested in causes and
effective treatments.
PRIME is also supported by many of the other ME charities. We have
provided to them some detailed samples of our data (without names and
addresses) and research results and look forward to further
collaboration.
“Any other
comments?”
It is clear from references in the media and from cries for help CHROME
still receives from people who cannot get the help they need that the
public is still ill-informed about ME. You provide much
information under the above heading. How best can we bring it
into the public domain – without breaking confidentiality of
course? There is a wealth of detail about the progress of this
condition but it is a complex task to bring it into a coherent enough
form to be acceptable to providers of the various services that need to
understand.
- Have you any ideas about how, where or to whom you would like
it presented?
- Do you know anyone who would be able and willing to do some
analysis and write ups of more ‘Stories from Below’?
You are doing so much already but we would welcome your comments on
where to go next with this particular data.
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 e-mail: secretary@chromesw6.co.uk
