Project information

Science, Politics and ME

It is important to understand the politics of ME and how the ‘establishment’ in most countries reacts to calls for support - financial & otherwise. Former MP/Dean of Biology at UEA, Dr Ian Gibson, will expand his 2006 Inquiry and provide the real story of how politics affects patients’ treatment.

December 2015 - October 2016

Charity information: Invest in ME/Invest in ME Research

Invest in ME/Invest in ME Research logo
  • Need

    Need

    ME patients are often not in a position to be heard and misconceptions/ignorance about the disease is compounded by a prejudiced denial of ME - as an ‘aberrant belief’ rather than a devastating physical disease. Dr Gibson led a 2006 Inquiry into ME yet still the media/public are unaware of the suffering that continues due to vested interests affecting policies in healthcare,academia,media. The book will definitively explain the influence of politics affects healthcare –and ultimately ME patients

    Solution

    The book will interview scientists, researchers, politicians, journalists, patients, carers and others and produce a definitive and authoritative body of research to expose the machinations and bias that pervades establishment organisations and, subsequently, carries down to affect the lives of patients, carers and whole families. Travelling through USA and Europe local interviews will be carried out with those who know the stories behind the politics and those affected by them.

  • Aims

    Aim 1

    Research the actions, causes and effects of political decisions surrounding ME over the last decades

    Activities

    » Interview leading figures in the ME research community as well as patients and carers in USA, Europe and UK

    The book will be reviewed and scrutinised by lawyers and European support groups before publication


    Aim 2

    Provide validation for ME patients by providing evidence of biased policy making in healthcare

    Activities

    » By providing the evidence from a distinguished scientist and politician more publicity will be given to the past mistreatment of people with ME

    By changing government, MRC/NIHR and NHS policy with regard to how ME is researched, funded and treated. A follow-up poll of NHS organisations would be performed


    Aim 3

    Help all involved with ME by setting landmark analysis of past prejudiced policies and help progress

    Activities

    » Producing a book which acts as historical record and a reference

    By assessing the amount of funding provided for correct research


  • Impact

    Impact

    This book could form a reference for the bad policies of the past and force change in government policy on ME thus benefiting patients, including provision of NHS research and treatment.
    The book has the possibility of being formed into a documentary programme.
    A poll of NHS managers and patients can measure change in perception or policy toward ME


    Risk

    The book may be controversial due to the nature of the research but it will be scrutinised by lawyers to avoid problems in publication.

    Reporting

    Via monthly newsletters and via our web site

  • Budget

    Budget - Project Cost: £15,000

    Loading graph....
      Amount Heading Description
      £5,000 Travel Travel to USA and European countries
      £10,000 Secretary Research/Secretarial Support
  • Background

    Location

    Visits to USA and European countries, as well as in UK, will be required

    Beneficiaries

    People suffering from ME, their families and friends will benefit as this disease will finally be recognised as having been served badly by governments, research councils and the media.
    Healthcare staff will benefit from increased knowledge of the disease and its history. Media will benefit by having an up-to-date reference book on what happened in the past.
    This will lead to more acceptance of the disease which will translate into a more valid research strategy to find treatments(s) and cause.

  • Why Us?

    Why Us?

    Since being formed this charity has campaigned for people with ME and their families and has introduced funding for biomedical research, better education about the disease and collaboration between international researchers and patient groups. Apart from initiating a more valid strategy for future research this book would enable all to see the real story behind the policies toward ME which have caused the awful situation in which patients find themselves.
    This then allows a better future for all

    Read more about the Charity running this project.

    People

    Dr Ian Gibson

    Author, researcher

    European ME Alliance

    Thirteen countries and fourteen patient groups in Europe collaborating and supporting each other and providing research material/contacs for the book

Dr Ian Gibson

Dr Ian Gibson

Things don't have to be the way they are - we can change things

Dr Ian Gibson