Introduction to ME/CFS

Since ‘An Introduction to ME/CFS’ was made, the new evidenced based NICE Guideline for ME/CFS has been published, replacing the 2007 version. The 2021 guideline supports a refreshingly different approach to the illness, as research shows the previous cognitive-behavioural model to be plainly wrong. The guideline now gives more accurate advice on diagnosis and reverses previous recommendations for graded exercise therapy and cognitive behavioural therapy to address flawed beliefs and behaviours.

NICE Guideline 2021: “ME/CFS is a condition which may have a profound and long-lasting effect on the lives of those affected by it…. It is not generally included in the training curriculums of health and social care professionals. Different sets of diagnostic criteria, different names for the condition (or possibly conditions), and continuingly emerging research regarding aetiology, pathogenesis and treatment all contribute to confusion on the part of practitioners. As a consequence, many health and social care professionals are ill-equipped to manage people with this multifaceted condition…”
https://www.nice.org.uk/guidance/ng206/evidence/b-information-education-and-support-for-health-and-social-care-professionals-pdf-9265183023

Contributors:

• Prof Jonathan Edwards
Professor of Medicine, University College London

• Dr Luis Nacul
Co-Principal Investigator, CureME London School of Hygiene and Tropical Medicine
Medical Director Complex Chronic Diseases Program
British Columbia Women’s Hospital, Vancouver, Canada

• Dr Eliana Lacerda
Assistant Professor & Clinical Lead CureME
London Scholl of Hygiene and Tropical Medicine

• Caroline Kingdon
Research Fellow, Research Nurse and UK ME/CFS Biobank Lead
London School of Hygiene and Tropical Medicine

• Dr Nina Muirhead
Dermatology surgeon Buckinghamshire NHS Trust
Chair of CMRC Medical Education Working Group

• Dr Nigel Speight
Paediatric Consultant with a special interest in ME
Paediatric medical advisor to the ME Association
Medical advisor to the 25% Group for the severely affected

• Dr Charles Shepherd
Medical advisor to the ME Association.

• Dr David Systrom
Pulmonary and Critical Care Physician at Brigham and Women’s Hospital
Professor of Medicine, Harvard Medical School

• David Tuller DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health, UC Berkeley CA

• Prof Brian Hughes
Professor in Psychology
National University of Ireland, Galway

• Prof Mark VanNess
Professor and Co-Chair, Health, Exercise & Sport Sciences
University of the Pacific. Stockton. CA

Resources.

• NICE Guideline 2021  https://www.nice.org.uk/guidance/ng206

• ME/CFS free online CPD course provided by Study PRN –  https://www.studyprn.com/p/chronic-fatigue-syndrome
The course covers 10 clinical cases and provides an excellent up-to-date learning resource for ME/CFS. Developed by Dr Nina Muirhead BA(oxon) BMBCh(oxon) MRCS DOHNS MEd PGDipDerm
“In writing this module I have started from scratch. I have drawn on the international peer reviewed literature and emerging international ME/CFS educational resources and have been fortunate to receive significant contributions from medical experts, scientists and patients.”

• Doctors with ME Education Resources list  https://doctorswith.me/home/education/

• Myalgic encephalomyelitis/chronic fatigue syndrome: Essentials of diagnosis and management. Bateman, L.; Bested, A.C.; Bonilla, H.F.; Chheda, B.V.; Chu, L.; Curtin, J.M.; Dempsey, T.T.; Dimmock, M.E.; Dowell, T.G.; Felsenstein, D.; et al.  Mayo Clin. Proc. 2021. https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext

• Website with information and links for clinicians, created by a coalition of expert ME/CFS clinicians in the USA.   https://mecfscliniciancoalition.org

• Healthcare Journal – Special Issue on Severe ME https://www.mdpi.com/journal/healthcare/special_issues/me_cfs_issue

• ME Association ME/CFS/PVFS Clinical & Research Guide (Purple Book) https://meassociation.org.uk/product/clinical-and-research-guide/

• Komaroff, A.L.; Lipkin, W.I. Insights from myalgic encephalomyelitis/chronic fatigue syndrome may help unravel the pathogenesis of postacute COVID-19 syndrome. Trends Mol. Med. 2021,27, 895–906. https://pubmed.ncbi.nlm.nih.gov/34175230/

• Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Primer for Clinical Practitioners. 2014 Edition. International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Available online: https://www.massmecfs.org/images/pdf/Primer_2014.pdf