Minutes of the meeting of the APPG on ME | 13 March 2013

April 8, 2013


Issued on behalf of Annette Brooke MP, Chair of the All Party Parliamentary Group on ME.

Attached are the Minutes from the group's meeting on 13 March, 2013, which focused on severe M.E. and received presentations by Professor Derek Pheby, Visiting Professor of Epidemiology, Buckinghamshire New University and Clare McDermott, NIHR Doctoral Research Fellow, Department of Primary Care and Population Sciences, University of Southampton.

A copy of a research article entitled Risk Factors for Severe M.E. by Prof Pheby and Lisa Saffron is also attached.

3 thoughts on “Minutes of the meeting of the APPG on ME | 13 March 2013”

  1. Sad, and shocked to read the experience of Professor Pheby.
    I had not realised the extent to which some “professionals” will go to ‘cover their tracks’.
    We went through similar but ‘mild’ in comparison; sadly we had no money to use legal expertise, & had to work our way through til case was closed. In the records we came across attempts to forge information, untrue information, and “missing” minutes from meetings.
    There was an organisation ‘Lawyers for Young People’ which provided free advice from experienced solicitors over the phone to youngsters. Sadly at the moment it is ceased as it was funded by The Children’s Society & they had their grant cut in 2011. It is hoped it may resume in future.
    It was an eye opener to learn from these solicitors how common these practices, and bullying attitudes were.
    I cannot see when it will cease, until all medics present ME as a physical illness of possible severity and long term nature.

  2. Invisible Woman

    Wow…. no stranger in the past to being treated with suspicion, prejudice and ignorance as an adult with ME & knew it must be far worse for a young person or child and their parents, but I confess to being shocked.

    This behaviour goes far beyond prejudice against ME & absolutely no one should be treated this way no matter whether what illness they have. This is about a fundamentally corrupt system that allows professionals to dodge personal responsibility while assuming their morals and ethics are of the highest standards.

    One (distant) day we will get to the bottom of the ME story but there will probably be other illnesses that invoke the same reaction from the establishment. Will these so called professionals still be persecuting families when they need help and support the most?

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