| 1 |
We are constantly told by the
Department of Health that the Medical Research Council is an independent body
responsible for funding medical research. However, any independent review of the
MRC’s decisions over the last generation will have shown that next to nothing
has been provided for biomedical research yet a great deal of money has been
given to those who incorrectly portray ME to be a somatoform illness.
World-class research bids have been put forward and rejected by people who have
vested interests in treating ME as a somatoform illness. The MRC is proven not
to be independent.
In the light of the recent XMRV
research findings will you support calls to ensure that the DoH allocates
adequate, ring-fenced funding for dedicated biomedical research into ME which
uses cohorts diagnosed according to the Canadian Consensus Document?
|
| 2 |
In light
of the recent research into ME performed by the
Whittemore-Peterson Institute of
Nevada, the US National Cancer Institute and the US Cleveland Clinic, in which a
new human retrovirus was found to be present in a cohort of CFS (ME) patients
tested, we believe that ME should be made a
notifiable illness and a major
programme of biomedical research should
now be undertaken, something which the Medical Research Council (a supposedly
independent body) should have performed over the last decade.
We have previously invited the Chief Medical Officer
to consider making ME a
notifiable
illness as the recent findings from the WPI research make the potential
implications of this illness to the general public as serious as the H1N1 flu
virus. Due to the implications from
the new XMRV research and the prevalence of ME will you support calls to make ME
a
notifiable
illness? |
| 3 |
One of the biggest problems regarding ME is the ignorance of
healthcare staff and especially GPs with regard to the organic basis of ME.
Will you support
Invest in ME in its request to modify the training curriculum for all doctors
and nurses to ensure that they have an adequate understanding of the physiology
of ME, knowledge of the Canadian Guidelines for diagnosing ME and knowledge of
the latest biomedical research into ME?
|
| 4 |
There is a dearth of good doctors who understand ME and are
willing to learn more about the possible treatments available and the extensive
biomedical research which exists.
Will you provide
measures to encourage GPs to specialise in ME and apprise themselves of the
latest biomedical research and possible treatments available?
|
| 5 |
Invest in
ME wish to establish a national centre of excellence for ME based around
biomedical research
Will you support Invest in ME
in its attempts to set up a national centre of excellence for ME which will
perform translational research into ME as an organic illness and provide
treatments for all ME patients from the severe to the mildly affected?
|
| 6 |
The severely affected with ME often receive no medical attention
and are left to cope alone.
Will you support
Invest in ME in its call for ambulatory services to be made available for all
severely affected people with ME who are unable to visit hospitals or GPs so
that ME specialists would be able to visit their homes?
|
| 7 |
Another major problem is the
ignorance of ME of staff at the Department of Work and Pensions and the
continual
victimisation of
people with ME when they apply for benefits for this chronic illness.
Will you encourage the
Department of Work and Pensions to provide their assessors with adequate and
up-to-date knowledge of the physiology of ME as a chronic neurological illness
and also provide disability forms which contain questions which
recognise the
true nature of this illness? |
