Project information

UK Centre for Biomedical Research into ME

To establish a facility for correct diagnosis, treatment and biomedical research into ME/CFS consisting of service commissioning, service provision with clinical diagnosis and examinations, translational biomedical research and a research database to allow for improved training of healthcare staff

January 2016 - December 2021

Charity information: Invest in ME Research

Invest in ME Research logo
  • Need

    Need

    People with ME/CFS need early and correct diagnosis, proper treatment and advice. The current status of services for people with ME and their families in the UK is poor with little knowledge or funding of current biomedical research and possible treatments being made available to patients or healthcare staff. This affects especially the young and severely affected, a group consisting of 25% of the ME patient population. The severely affected ME patients are mostly ignored by healthcare services

    Solution

    The Centre would perform correct examinations using modern diagnostic and clinical protocols. Follow-up examinations would provide all patients with a service/possible treatments. Results from treatments would be fed back into a database, to be administered by the university & hospital. The Centre would perform translational biomedical research into ME using state-of-the-art research techniques and apply results from research more swiftly to patients. The Centre would be the UK hub for research

  • Aims

    Aim 1

    To create a translational biomedical research lab to increase knowledge about the disease


    Activities

    » Create a post-doc position at the university to allow results of research to be analysed
    » Perform state-f-the-art research to detect viruses in a patient
    » Examine the possible link between ME and gut inflammation in cooperation with the Institute for Food Research (IFR).
    » A research database/biobank will be established to assist epidemiological studies and enhance research potential and collaboration

    What success will look like

    Success will be examination of at least 50 patients in the first project to create a cohort of well-defined patients and publication of a research paper leading to treatment(s)


    Aim 2

    Perform early and correct diagnosis of ME


    Activities

    » Establish a clinical lead consultant postion to assess and plan the development of future services in conjunction with commissioning CCGs
    » Provide access to specialist assessment, diagnosis and education on the clinical management, including symptom control and specific interventions.
    » Enable healthcare staff to feel more comfortable with the diagnosis of ME being made

    What success will look like

    Success will be examination of at least 50 patients in the first project to create a cohort of well-defined patients and publication of a research paper leading to treatment(s)


    Aim 3

    Collaboration with other countries in Europe/USA/Australia


    Activities

    » Creation of a shared research database
    » Sharing of results between centres to effect more effective use of resources and speedier development of drugs to treat this disease

    What success will look like

    Establishment of joint cooperation and sharing of data. Charity has already initiated European ME Research Group (EMERG).


    Aim 4

    facilitate training and education for healthcare staff in diagnosis and management of ME


    Activities

    » Visits by known experts in ME for training
    » Conferences to present/review biomedical research into ME

    What success will look like

    More doctors entering this area for specialisation. More awareness by doctors of the seriousness of this neurological illness


  • Impact

    Impact

    MEwill receive proper attention and this will lead to a coordinated strategic approach to research and treatment of MES.
    Other research will be able to be planned with a research database being formed to provide a central repository of data.
    Collaboration with other research establishments will remove prejudices about this disease and bring about advances in treatment and cures for this disease, enabling patients and their families to regain their lives and contribute to society.

    Risk

    Lack of funding.
    The charity will mount campaigns to raise funds with the help of our supporters, supporting organisations and charities and our colleagues in the European ME Alliance.
    We already have offers of support and an existing campaign has already raised funds to begin the initial research.

    Reporting

    Progress reports, newsletters, end of research project press conferences, invitations to conferences and research colloquiums

  • Budget

    Budget - Project Cost: £1,920,000

    Loading graph....
      Amount Heading Description
      £1,125,000 PhDs 3 PhDs per year for 5 years
      £270,000 post-docs post doc researchers for 5 years
      £250,000 Examinations/Trials examinations of a cohort of patients with ME. performed by Consultant - initially 3 years
      £225,000 Admin/Consumables Admin/Consumables five years
      £50,000 Medical Students Medical Students involved for education

    Current Funding / Pledges

    Source Amount
    Foundation £300,000 Conditional
    Fundraising campaign £410,000 Conditional
    Collaborative venture £50,000 Conditional
  • Background

    Location

    In the Norwich Research Park in Norfolk. This campus also includes the University of East Anglia and the Norfolk and Norwich University Hopistal, the TGAC, Quadram Institute Bioscience and the Innovation Centre with a new microbiology facility.

    Beneficiaries

    People with ME and their families. The healthcare professionals. The local economy. The UK science base. The UK economy. The reputation of the UK health services and scientific organisations. The UK society.

  • Why Us?

    Why Us?

    Invest in ME is a UK registered charity which aims to provide better education and awareness about ME. The charity has organised 13 annual CPD-accredited international biomedical research conferences and 8 research Colloquiums in London since 2006 – these have attracted speakers/delegates from over 20 countries from North America, Europe, Asia and Australasia. The charity is also founder member of the European ME Alliance – a group of national patient organisations from nine European countries.

    Read more about the Charity running this project.

    People

    Dr Ian Gibson

    Scientific advisor. Dr Gibson is advising the charity on science, the media, politics and how the proposal can be achieved

    Professor Angela Vincent

    Scientific advisor

    Kathleen Mccall

    Charity Chairman and patient representative

    Richard Simpson

    Charity Trustee and patient representative

6th Invest in ME International ME/CFS Conference

6th Invest in ME International ME/CFS Conference