UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

Doctors with ME have revealed on Twitter that "Nina Muirhead ... has been invited to co-chair the Education and Attitudes Working Group with Professor Steven Holgate ..."

 

Pretty much what I was thinking.

I agree that a new Minister, who doesn't have a personal interest/care, is pretty likely to come along relatively soon. However, if the civil servants have e.g. been warned about issues re funding dodgy research then that lesson/memory may persist. Even if the next Minister is a return to normal/doesn't care they'll still not want to leave the informed part of the audience (Carol Monaghan MP +++) the opportunity to say "we're making the same mistakes --- has nothing been learned?". Civil servants will know that if the Minister is damaged by criticism then they'll be in trouble too!

As I'm typing this I'm a little concerned that a new PM means a new cabinet ---- new Minister for Health & Social Care!

 

Information tweeted by the ME Association.

"Government’s commitment to ME/CFS starts to take shape Dr Charles Shepherd is now a member of the government's research strategy working group and the first meeting was held last week."

"Nicola Anson (MEA Trustee) will join the Attitudes & Education working group, and Russell Fleming (Communications Manager) will join the Living with ME/CFS working group."

More detail here, https://meassociation.org.uk/2022/06/governments-commitment-to-me-cfs-starts-to-take-shape/

 

Sonya C from AfME has shared "Professionals attending the roundtable below" on Twitter

 

Professor Manju Kurian
UCL Great Ormond Street Institute of Child Health

'The Neurogenetics Group (led by Dr Manju Kurian) focuses on the investigation of childhood neurological disorders'

https://www.ucl.ac.uk/child-health/...ciences/molecular-neurosciences/neurogenetics


https://www.ucl.ac.uk/child-health/people/iris-profile-manju-kurian

 

Looks ok i'm glad to see Chris Ponting there, Julia Newton's a bit of a loose cannon i'd have thought, not sure where she's at these days.

I just so so wish they would include @Jonathan Edwards though, I'm concerned things might go off in an unhelpful direction - eg taking all biomed research as wonderful and high quality.

 

Contrast and compare:

Dr M C Sharpe MRCPsych Clinical Lecturer, Department of Psychiatry, University of Oxford

Dr L C Archard PhD Senior Lecturer, Department of Biochemistry, Charing Cross and Westminster Medical School, London

Professor J E Banatvala MD Professor of Virology, Department of Virology, St Thomas' Hospital Medical School, London

Dr L K Borysiewicz FRCP Wellcome Trust Senior Lecturer, Department of Medicine, University of Cambridge

Professor A W Clare MD Clinical Professor of Psychiatry, Trinity College, Dublin Dr A David MRCPsych MRC Training Fellow, Institute of Psychiatry, London

Professor R H T Edwards FRCP Professor of Medicine, Department of Medicine, University of Liverpool

Dr K E H Hawton DM Consultant Psychiatrist, Department of Psychiatry, University of Oxford

Professor H P Lambert MD Emeritus Professor of Microbial Disease, St George's Hospital Medical School, London

Dr R J M Lane MD Consultant Neurologist, Regional Neurosciences Centre, Charing Cross Hospital, London

Dr E MMcDonald MRCPsych Research Psychiatrist, Institute of Psychiatry, London

Professor J F Mowbray FRP Immunopathology, Department of Immunopathology, St Mary's Hospital Medical School, London

Dr D J Pearson FRCP Senior Lecturer, Department of Medicine, University of Manchester

Dr T E A Peto MRCP Consultant Physician, Department of Infectious Diseases, John Radcliffe Hospital, Oxford

Dr V R Preedy PhD Research Biochemist, Department of Biochemistry, King's College Hospital, London

Dr A P Smith PhD Research Psychologist, Department of Psychology, University of Sussex Dr D G Smith MB General Practitioner, Horndonon-the-Hill, Essex

Dr D J Taylor DPhil MRC Staff Scientist, MRC Biochemical and Clinical Magnetic Resonance Unit, John Radcliffe Hospital, Oxford

Dr D A J Tyrrell MD Director, MRC Common Cold Unit, Harvard Hospital, Salisbury

Dr S Wessely MRCPsych Wellcome Training Fellow in Epidemiology, Institute of Psychiatry, London

Dr P D White MRCPsych Senior Lecturer, Department of Psychological Medicine, St Bartholomew's Hospital, London

Other signatories who contributed to the guidelines but who were unable to attend the meeting

Professor P 0 Behan MD Professor of Neurology, Department of Neurology, University of Glasgow

Dr F Clifford Rose FRCP Director, Academic Unit of Neuroscience, Charing Cross and Westminster Medical School, London

Professor T J Peters FRCP Professor of Clinical Biochemistry, Department of Biochemistry, King's College Hospital, London

Dr P G Wallace MRCGP Head of Research Unit, Department of General Practice, St Mary's Hospital Medical School, London

Professor D A Warrell FRCP Professor of Tropical Medicine and Infectious Diseases, Nuffield Department of Medicine, John Radcliffe Hospital, Oxford

Dr D J M Wright MD Consultant Microbiologist, Department of Microbiology, Charing Cross Hospital,

Report of a consensus meeting held at Green College, Oxford 23 March 1990

 

Does anyone know who is in the PAG? . It seems to be very hard to find out.

 

From the Patient Advisory Group application pack, available via https://meassociation.org.uk/2018/1...-cmrc-patient-advisory-group-16-october-2018/

"PAG members can choose to be anonymous and not have their name shared (in part or in full) on meeting minutes or other open-access documents. Any decision made regarding anonymity will be fully respected."

Given the criticism previously leveled at the CMRC (now MERC), I can totally understand why people taking part in the PAG might wish to keep their involvement anonymous.

 

The criticism levelled at the CMRC in the early years was justified. NICE '21 patient reps were named, NICE '07 patient reps were named. Who wants to be represented by anonymous patients?