The ISG propose for a
facility to be instigated with four main elements for diagnosis, treatment and
research into ME/CFS – service commissioning, service provision with clinical
diagnosis and examinations, translational biomedical research and a research
database to allow for more research and improved training of healthcare staff.
Figure 1 shows the elements of the model
with patient care and treatment at the centre of the model.
The proposal is located around the Norwich Research Park in
Norfolk. This area contains world-class facilities with a leading university (the University of East Anglia (UEA)),
leading research institutes and a modern flagship hospital (the Norfolk and
Norwich University Hospital) - all of which
complement the necessary biomedical research which would take place.
Service commissioning would be performed
by the local PCT. The service would require early and correct diagnosis, examination and
treatment of ME/CFS using a clinical biomedical lead consultant with GPs with
special interest being connected to the service.
examinations of people with ME/CFS would be commissioned by the PCT. Referrals
to the university hospital would be via existing methods from GPs. An important
issue is for early and correct diagnosis to be determined.
The service would include a clinical
biomedical lead consultant who would perform correct diagnosis (using the
international standard Canadian Consensus Guidelines), perform a full
examination using a standard clinical protocol and, once patients have been formally
diagnosed as having ME, administer possible treatments and participate in
biomedical research into the disease.
Using a standard diagnostic and clinical
protocol the service would allow a model of care and appropriate care packages
for people with severe presentations and to establish and co-ordinate a clinical
network and disseminate best practice across that network.
Follow-up examinations would be
scheduled so that patients are provided with a service and possible treatments
and results from any treatments are fed back into a database which is
administered between the university hospital and the university research
GPs in the area with a special interest
in ME would be used to assist and be trained in diagnosis and treatment of ME.
but complementary element will be for translational biomedical research to be
started by the university in association with other complementary research
The university would undertake
biomedical research into ME using cohorts of patients from those being examined
at the university hospital and provide possible recommendations for treatment.
The university research would be used
for more rapid provision of possible treatments for patients whilst at the same
time building up the research database for ME/CFS and allowing fostering of new
areas of cooperation with other biomedical research facilities.
The research being proposed by the
university would be of the most advanced possible – using virology and
immunology as the key for examining patients. An important aspect of the
biomedical research is that properly defined and distinct patient cohorts are
defined and maintained.
The research would be oriented toward
translational biomedical research, which allows results from research to be
applied toward treatments for ME patients.
Our initial proposal for research which
has been discussed with researchers at the UEA, would aim to initiate studies using TGAC
sequencing facility at the Norwich Research Park which would allow all known and
unknown viruses present to be identified in a cohort of well defined patients.
Allied to this would be biomedical
research projects – the first of which would examine the possible link between
ME and gut inflammation.
These initial and ongoing projects would
enable a database to be established for use in further research. This research
database will assist epidemiological studies, enhance research potential and
provide patients with proper records of treatment.
A research protocol will be established
to outline all the study procedures, including data collection and planned data
proposal would make use of the existing infrastructure where patients are
initially seen by GPs and referred to a consultant.
differs is that a specialist biomedical clinical lead would be used to perform
diagnosis and provide treatment and would be working with a translational
biomedical research facility at the university in order to deliver real
improvement in patient care from scientific discovery.
The proper examination and treatment
benefits patients, their families and the PCT by ensuring that adequate services
are provisioned for people suffering from this disease. The hospital and
associated staff will be able to be educated in the latest knowledge regarding
this disease and would therefore be able to make better decisions. The research
proposal would establish this as the most advanced facility in
Europe, thus bring more potential for investment and publicity.
The above proposal would lead to a
facility with the
following benefits –
Early and correct diagnosis of ME/CFS
the clinical lead consultant would assess and
plan the development of future services in conjunction with commissioning PCTs
it would provide access to specialist
assessment, diagnosis and advice on the clinical management, including symptom
control and specific interventions, for both patients and health professionals
eventual provision of an ambulatory service
and/or tele-medical services for those severely ill patients who cannot be moved
development of a network of local multi-agency
domiciliary services to support people who are more severely affected and who
are unable to access hospital and primary care services
allow ME/CFS patients (including those severely
affected) to participate in clinical trials, where novel research will be
conducted, and where medical students can learn about this disease
facilitate training and education
opportunities for healthcare staff to enhance their knowledge and skills in the
diagnosis and management of CFS/ME
lead the development of services within primary
and secondary care and support GPs and other health professionals in the care of
patients with ME.
Healthcare staff would feel more comfortable
with the diagnosis of ME/CFS being made
Savings on existing consultant referrals and
staff by concentrating ME/CFS examination in one area.
of HEALTHCARE STAFF
The need for training in ME/CFS is one
of the main areas of interest for the ISG. The proposed model would allow the GP
network to have access to up to date information about ME/CFS including data on
treatments and prognosis.
Specialist advice for more complex cases
across the country could be provided based on referrals from other PCTs. This in
turn would complement the research database thus increasing knowledge and
awareness of treatments.
of care and appropriate care could be developed with packages for people with
This model would be developed in the
future with an ambulatory service and/or tele-medical services being employed
for those who are too ill to attend the hospital examination. Phlebotomy
services would be provided for home visits to be made to allow the severely
affected to participate in the research and allow treatments for these
We would seek to establish additional biomedical research projects
to be undertaken by the university which would increase the knowledge about the disease and facilitate
development of treatments for patients.
In partnership with the charity more
training courses would be arranged with visiting experts (researchers and
clinicians) being able to share experiences and data and facilitate more
education about the disease.
Future developments would see the
potential of referrals from other areas (and other countries) to be created thus
generating income and helping to establish the translational research and
treatment facility as the foremost facility in Europe for treating myalgic
Invest in ME have been facilitating
research collaboration between individuals and organmisations and have funded UK research
by WPI. IiME joined with the Alison Hunter Memorial Foundation of Australia and,
with Bond University and University of East Anglia, convened the
Clinical Autoimmunity Working Group
in London in May 2012 to raise awareness of ME, and promote collaboration,
innovation and the foundations for a clearer strategy of
biomedical research into ME. IiME has European
connections and links to other researchers and institutes in Europe and
The foundations are therefore already
in place to advance science and provide the promise of better treatment and
possible restoration of function and lives back to a section of the community
who have received very little help in the past.
HOW TO LEARN
Contact Invest in ME
WAYS TO SUPPORT OUR PROPOSAL
We shall continue to update these pages as more progress is made
in our objective to establish a UK Centre of Excellence for Biomedical Research
into ME. We will continue to campaign for this facility to be established.
If you would like to support us then we welcome all support.
BIOMEDICAL RESEARCH FUND
Donations to the Invest in ME Biomedical Research Fund will be
used to support the establishment of this facility.
us by contributing to the Invest in ME Biomedical Research Fund
for ME -
Donate to the Invest in ME Biomedical
Let's Do It for ME Campaign
The Let's Do It For ME campaign aims to help IiME raise funds for biomedical research into ME within our proposal.
More details, including a goal thermometer,
are available here.
The Invest in ME Steering Group Proposal for a
ME Research Facility
MP Executive Summary September
FAQ September 2011
19 September 2012