Invest in ME Research Centre of Excellence for Myalgic Encephalomyelitis Description
UK charity Invest in ME Research has been working towards establishing an examination and research facility for ME in Norwich, Norfolk, UK, utilising the knowledge, expertise and facilities within and around the Norwich Research Park – which includes University of East Anglia, Quadram Institute Bioscience (formerly Institute of Food Research), Earlham Institute (formerly The Genome Analysis Centre) and the Norfolk and Norwich University Hospital.
The charity published its proposal for a UK Centre of Excellence for ME in 2010. Supporters launched the Let’s Do It for ME campaign in 2011 to help raise funds for the research. The translational biomedical research strategy got underway in 2013. Funded research projects here: investinme.org/ce-projoverview
June 2018 status update: investinme.org/ce-cofeforme.shtml#exsu
June 2019 announcements: investinme.org/IIMER-Newslet-190603CentreNews.shtml
People with ME need early and correct diagnosis, proper treatment and advice. The status of services for people with ME and their families in the UK has been poor with little knowledge of current biomedical research being applied and possible treatments not being made available to patients or healthcare staff.
This has resulted in ME patients having no service and there being little progress in attracting new researchers or clinicians to study the disease.
The dangers for people with ME having no proper clinical examination and no access to possible treatments is that the disease can develop into more severe forms with significant loss of functioning. There is also the danger of mis- or missed diagnosis – a common problem with people thought to suffer from ME.
AIMS & OBJECTIVES
With the objective of improving and promoting education about ME amongst healthcare staff and raising awareness of the disease the charity Invest in ME Research feels that the best way to make progress is to establish a national centre of excellence for ME.
The charity believes that a change needs to be made in the way service provision for ME patients is carried out and is suggesting a simple but effective structure for providing services and instituting major biomedical research into this disease which will have profound effects on the way ME/CFS is treated in the UK and establish a hub of scientific and clinical excellence for ME within Europe.
To this end the charity has established momentum by implementing research projects and synergising resources to build the foundations of a research base which can develop into a UK Centre of Excellence for Biomedical Research into ME.
The Centre of Excellence is now a distinct and attainable objective – harnessing the benefits of collaborative biomedical research in modern facilities with worldclass researchers. Our aim is to establish a world-class, sustainable examination and research centre which would form the hub of European research and treatment for this disease and produce a pathway to produce huge benefits for the nation and across the world.
The charity’s’ proposal for a Centre of Excellence for ME will require key elements to be put in place or developed to enable the aetiology of the disease to be understood and advances to be made in finding the cause of this disease by developing treatments for patients.
These would consist of – full examinations, clinical diagnosis, translational biomedical research, a research database (including biobank(s) to allow for more research opportunities and support) and improved education and training of healthcare staff with standard and up-to-date protocols being used.
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), 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.
REFERRALS & CLINICAL EXAMINATIONS
This proposal would make use of the existing infrastructure where patients are initially seen by GPs and referred to a consultant. It is assumed that the local primary care would initially filter ME patients via GPs using appropriate guidelines and having performed necessary tests, as normally happens to exclude other conditions.
GPs in the area with a special interest in ME would be used to assist and be trained in diagnosis and treatment of ME. Once having ensured that a patient is a likely candidate for referral to an ME consultant then that referral would be made. The service would require early and correct examination and referral to the consultant
The examinations of people with ME would be performed by the ME consultant at the Centre – in the hospital. 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 consultant would perform a full clinical examination of the patient using a standard clinical protocols. For home-bound patients who are unable to visit the hospital then home visits would be built into the model.
DIAGNOSIS & TREATMENT
The diagnosis would be confirmed by the ME consultant (using the international standard Canadian Consensus Guidelines or its evolutionary replacement), and, once patients have been formally diagnosed as having ME, administer possible treatments. If consent is obtained the patient may then also be entered for inclusion and participation in biomedical research into the disease at the centre.
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 faculty.
TRANSLATIONAL BIOMEDICAL RESEARCH
It is important that the consultant is linked with the research taking place in the Research Park.
A parallel but complementary element will be for translational biomedical research to be started by the university in association with other complementary research organisations.
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.
Allied to this would be biomedical research projects – the first of which would examine the possible link between ME and gut inflammation.
The Centre of Excellence is intended to establish the cause(s) of ME and develop treatments. Research would also be focused on international collaboration in biomedical research.
RESEARCH DATABASE REPOSITORY
These initial and ongoing projects would enable a research repository to be established for use in further research. This research repository will assist epidemiological studies, enhance research potential and provide patients with proper records of treatment. Similarly a bio/tissuebank would be established/augmented using a registry and standard up-to-date protocols for collection.
A research protocol will be established to outline all the study procedures, including data collection and planned data analysis.
The need for training in ME is one of the main areas of interest for the charity. The proposed model would allow the GP network to have access to up to date information about ME including data on treatments and prognosis.
Specialist advice for more complex cases across the country could be provided based on referrals from other clinical commissioning groups. This in turn would complement the research database thus increasing knowledge and awareness of treatments.
Models of care and appropriate care could be developed with packages for people with severe presentations.
Medical students would be encouraged to intercalate in the later years of their training and participate in the research – thus gaining more knowledge about the disease and passing back and sharing this experience to their peers.
Opportunities for holding working groups or seminars would facilitate the spread of knowledge amongst the community as well as healthcare professionals.
Invest in ME Research has been facilitating and supporting a strategy of international collaboration in research into ME which the charity believes is the most effective and quickest route to finding solutions to this disease.
The charity joined with the Alison Hunter Memorial Foundation of Australia, and with Bond University and University of East Anglia, in convening 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.
Invest in ME Research has organised international ME conferences and biomedical research colloquiums since 2006 and is a founding member of European ME Alliance.
European ME Alliance joined the European Federation of Neurological Associations in 2015.
The foundations are therefore 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.
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 disenfranchised patients.
We would seek to establish additional biomedical research projects to be undertaken by the university and its partners in Europe 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.
For an initial five year period a strategy of building a team would be implemented which would supervise the work of at least three PhDs each year in the Centre performing biomedical research.
This would provide the solid foundation of research at the hub.
Potentially other partners would interact and collaborate with the research being undertaken at the hub.
We would aim to maintain this momentum of research by continuing at least this level as the Centre continues.
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 encephalomyelitis.
It is hoped that an epidemiological study can be performed alongside the research.