• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Natalie Boulton has completed the three videos on Dialogues of a Neglected Illness

Countrygirl

Senior Member
Messages
5,475
Location
UK
Natalie Boulton has just completed the Dialogues of a Neglected Illness with a video on hospital admissions.

In the link below you will find all of three excellent videos.

https://www.dialogues-mecfs.co.uk/films/severeme/?fbclid=IwAR2DTytKCYQH3zWl8zMNL4VuglqtfqEPSepyrbX13wKTSS3bWVgcg6x6M94


Contributors to the Severe & Very Severe ME/CFS videos


Dr Nigel Speight:
Paediatrician in Durham with a decades long special interest in ME/CFS.
Medical advisor to the ME Association, 25% ME Group for the Severely Affected, TYMES Trust and other charities.
Co-author of:
• ME/CFS Diagnosis and Management in Young People: A Primer 2017 https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full .
• ME International Consensus Criteria 2011 https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2796.2011.02428.x
•The Chief Medical Officer’s Report 2002 https://meassociation.org.uk/wp-content/uploads/CMO-Report-2002.pdf
Dr William Weir:
Infectious Diseases Consultant with a long involvement of treating ME patients. He succeeded Dr Melvin Ramsey at the Royal Free Hospital (where there was an epidemic of ME in1955).
Member of the NICE Guideline Development Committee – due to be published in April 2021
Dr Luis Nacul:
Principal Investigator CURE ME London School of Hygiene and Tropical Medicine.
Medical Director of the Complex Chronic Diseases Program at British Columbia Women’s Hospital in Vancouver, Canada.
Member of the NICE Guideline Development Committee. Co-Principal Investigator for Decode ME (large DNA study) with £3.2 million funding, awarded jointly by the Medical Research Council and National Institute for Health Research https://www.decodeme.org.uk
Publications and Reports https://cureme.lshtm.ac.uk/about-us/publications/
Dr Nina Muirhead:
Dermatology Surgeon, Buckingham Healthcare NHS Trust. Medical Education Lead – UK ME/CFS Research Collaborative. Author of free CPD Training module in ME/CFS – 2020 www.studyprn.com/p/chronic-fatigue-syndrome
Mrs Caroline Kingdon
:
Research Fellow, Research Nurse LSHTM. UK ME/CFS Biobank Lead. Member of the NICE Guideline Development Committee. https://www.lshtm.ac.uk/aboutus/people/kingdon.caroline
Dr Charles Shepherd:
Medical Advisor ME Association. Co-author – ME/CFS/PVFS An Exploration of the Key Clinical Issues. Co-opted Member of the NICE Guideline Development Committee
Prof Todd Davenport:
University of the Pacific, California. Scientific Advisor Workwell Foundation https://workwellfoundation.org/resources/#publications


Patients and carers

Rob – Previously a School Head of Dept. and Local Authority Officer who worked with children with very complex needs. Father and carer for family members with ME/CFS
Naomi Whittingham – long term patient and advocate
Jane Collingridge – mother of Emily Collingridge who wrote Severe ME/CFS. A Guide to Living 2010
Graham McPhee – long term ME patient and advocate
Catherine Hale – Founder Chronic Illness Inclusion Project
Grace – ME patient
John Peters – long term ME patient and advocate
Vera Kindlon – carer for her son, advocate Tom Kindlon, for over 30 years