Severe & Very Severe ME / CFS

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

An introduction to the more severe end of the spectrum of ME/CFS.

Severely ill ME/CFS patients are by definition largely, if not totally housebound, except for their attempts to access medical care. They are generally unable to cope with social visitors, and may become somewhat forgotten about, easily misunderstood and even maligned, not only by the medical profession, the media and society more generally, but even by family and friends.  None-the-less patients often show remarkable determination and courage in attempting to play a larger role in society and in trying to regain their lost health and independence.

A more detailed look at very severe ME/CFS.

Very severe ME/CFS can be a very frightening disease, not only for the family and carers of the severely ill patient, but also for doctors who are unlikely to have any previous experience of these most severe presentations. Patients can die from very severe ME/CFS and it’s complications, and this is more likely to happen when their condition is badly managed by ill-informed doctors. It is important that doctors listen to the patient, or if the patient wishes, to their carers.  Specialist help should be available for these very severe cases.

``While it may be understood from a written page that the severe and very severe ME/CFS patient should receive advanced medical care outside of the hospital setting, this video brings the depth of understanding and acceptance of this concept to the viewer’s core. A must see for physicians accepting the responsibility for these patients and a must see for carers confronting the decision as to whether the patient in their care needs to go to hospital and, if so, how best to manage it.”
Kenneth J. Friedman, Ph.D.
Guest Editor: Advances In ME/CFS Research and Clinical Care. Guest Editor: ME/CFS - The Severely and Very Severely Affected

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.
ME International Consensus Criteria 2011
The Chief Medical Officer’s Report  2002 

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
Publications and Reports

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 

Mrs Caroline Kingdon:
Research Fellow, Research Nurse  LSHTM. UK ME/CFS Biobank Lead. Member of the NICE Guideline Development Committee.

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 

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

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


Special Issue of Healthcare: ME/CFS – the Severely and Very Severely Affected
Includes –
Health Care Responsibility and Compassion – Visiting the Housebound Patient Severely Affected by ME/CFS. Caroline Kingdon, Dionysius Giotas,  Luis Nacul, Eliana Lacerda. Healthcare. 2020 Jul 4;8(3):197
Severe ME in Children. Case Reports. Nigel Speight. Healthcare. 2020 Jul 14;8(3):211.

Myalgic encephalomyelitis/chronic fatigue syndrome diagnosis and management in young people: a primer. Rowe PC, Underhill RA, Friedman KJ, et al. Front Pediatr. 2017; 5:121. doi:10.3389/fped.2017.00121 See under – Areas of Special Clinical Concern.

ME/CFS/PVFS An Exploration of the Key Clinical Issues. Dr Charles Shepherd Dr Abhijit Chaudhuri. UK ME Association Purple Book – updated each year – Severe ME/CFS section indexed

Support should be given to applications for disability aids and appliances. Financial help may be available in the form of a govt Disabled Facilities Grant:

International Association of CFS/ME. Chronic fatigue syndrome/myalgic encephalomyelitis: primer for clinical practitioners.
International Association of CFS/ME. 2014. Page 27

Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents’ Experiences
Martina MihelicovaZachary SiegelMeredyth EvansAbigail Brown, and  Leonard Jason

Voices from the Shadows. Video produced/directed Natalie Boulton & Josh Biggs
A half-length 30 min. version (can be watched here) produced for the Stanford Medical School ME/CFS Symposium 2014
Shows the impact of medical disbelief and mismanagement on the lives of four young ME patients.