--- In IMEGA-e@yahoogroups.com, "Charles Shepherd"
<charles.c.shepherd@...> wrote:
MAY BE REPOSTED
Dear Professor Borysiewicz
Five years ago on this day BBC News reported on the MRC research
strategy for ME/CFS. The news item - 'ME research action plan
revealed' - can still be accessed at:
http://news.bbc.co.uk/go/em/fr/-/1/hi/health/2581153.stm
The MRC announcement brought real hope to thousands of people with
ME/CFS, along with the expectation that MRC funding would now be
directed towards the underlying cause of this illness as well as
investigating forms of treatment that are not based on the deeply
flawed psychosocial model of causation.
Instead, all that has happened for the past 5 years is the
allocation of MRC funding to yet more studies into behavioural
treatments (ie the FINE and PACE Trials) that are largely based on
the idea that ME/CFS is maintained by abnormal illness
beliefs/behaviour and deconditioning.
Not surprisingly, people with ME/CFS feel badly let down and angry -
especially when a succession of proposals looking at causation have
been turned down by the MRC and promising new research initiatives,
such as the studies into gene expression being carried out by
Professor John Gow and Dr Jonathan Kerr, are having to be funded by
the medical charities, including the ME Association.
We presume you are aware that MPs are now so concerned about the
current situation that a House of Commons Adjournment Debate is
being sought for the New Year.
We appreciate that you have only recently taken over as Chief
Executive at the MRC. Could we therefore ask that you take this
opportunity to look again at the way in which current systems are
not resulting in research initiatives into causation and non
behavioural forms of treatment being funded by the MRC. One very
simple and cheap way to start 2008 would be for the MRC to place
announcements in the Lancet and other medical journals making it
clear that the MRC would very much welcome good quality research
proposals in the areas that we refer to. We know from our own
experience as a medical charity which funds research that this can
be a very effective way of encouraging new research applications.
We would also be grateful if you would agree to meet with ME
Association representatives in the New Year to discuss our concerns.
Yours sincerely
Neil Riley
Chair
Dr Charles Shepherd
Hon Medical Adviser
ME Association
4 Top Angel
Buckingham MK18 1TH
Website: www.meassociation.org.uk
[Non-text portions of this message have been removed]
--- End forwarded message ---
<charles.c.shepherd@...> wrote:
MAY BE REPOSTED
Dear Professor Borysiewicz
Five years ago on this day BBC News reported on the MRC research
strategy for ME/CFS. The news item - 'ME research action plan
revealed' - can still be accessed at:
http://news.bbc.co.uk/go/em/fr/-/1/hi/health/2581153.stm
The MRC announcement brought real hope to thousands of people with
ME/CFS, along with the expectation that MRC funding would now be
directed towards the underlying cause of this illness as well as
investigating forms of treatment that are not based on the deeply
flawed psychosocial model of causation.
Instead, all that has happened for the past 5 years is the
allocation of MRC funding to yet more studies into behavioural
treatments (ie the FINE and PACE Trials) that are largely based on
the idea that ME/CFS is maintained by abnormal illness
beliefs/behaviour and deconditioning.
Not surprisingly, people with ME/CFS feel badly let down and angry -
especially when a succession of proposals looking at causation have
been turned down by the MRC and promising new research initiatives,
such as the studies into gene expression being carried out by
Professor John Gow and Dr Jonathan Kerr, are having to be funded by
the medical charities, including the ME Association.
We presume you are aware that MPs are now so concerned about the
current situation that a House of Commons Adjournment Debate is
being sought for the New Year.
We appreciate that you have only recently taken over as Chief
Executive at the MRC. Could we therefore ask that you take this
opportunity to look again at the way in which current systems are
not resulting in research initiatives into causation and non
behavioural forms of treatment being funded by the MRC. One very
simple and cheap way to start 2008 would be for the MRC to place
announcements in the Lancet and other medical journals making it
clear that the MRC would very much welcome good quality research
proposals in the areas that we refer to. We know from our own
experience as a medical charity which funds research that this can
be a very effective way of encouraging new research applications.
We would also be grateful if you would agree to meet with ME
Association representatives in the New Year to discuss our concerns.
Yours sincerely
Neil Riley
Chair
Dr Charles Shepherd
Hon Medical Adviser
ME Association
4 Top Angel
Buckingham MK18 1TH
Website: www.meassociation.org.uk
[Non-text portions of this message have been removed]
--- End forwarded message ---
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