Tom Kindlon
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https://www.mdpi.com/2227-9032/10/12/2438
What Primary Care Practitioners Need to Know about the New NICE Guideline for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults
by
Caroline Kingdon 1,*,Adam Lowe 2, Charles Shepherd 3 and Luis Nacul 1,4
1
CureME, Clinical Research Department, London School of Hygiene and Tropical Medicine, London WC1E 7HT, UK
2
Centre for New Writing in the School of Arts, Languages and Cultures, University of Manchester, Oxford Rd, Manchester M13 9PL, UK
3
Myalgic Encephalomyelitis Association (MEA), 7 Apollo Office Court, Buckingham MK18 4DF, UK
4
B.C. Women’s Hospital & Health Centre, Complex Diseases Program, Vancouver, BC V6H 3N1, Canada
* Author to whom correspondence should be addressed.
Healthcare 2022, 10(12), 2438; https://doi.org/10.3390/healthcare10122438
Received: 19 October 2022 / Revised: 29 November 2022 / Accepted: 30 November 2022 / Published: 2 December 2022
(This article belongs to the Collection Why Some Patients Never Fully Recover: Post Active Phase of Infection Syndromes (PAPIS))
Download Review Reports Versions Notes
Abstract
The new NICE guideline for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), published in October 2021, makes significant changes in treatment recommendations.
It acknowledges the complexity of this chronic medical condition, which always impacts quality of life and can be profoundly disabling, recognising the prejudice and stigma that people with ME/CFS often experience in the absence of any specific diagnostic test.
The guideline outlines steps for accurate diagnosis, recognising post-exertional malaise as a core symptom; importantly, ME/CFS can now be diagnosed after just 3 months in a bid to improve long-term health outcomes.
It recommends the need for individual, tailored management by a multi-disciplinary team, ensuring that the wellbeing of the individual is paramount.
The guideline makes clear that any programme based on fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (GET), should not be offered as a treatment for ME/CFS and emphasises that cognitive behavioural therapy (CBT) should only be offered as a supportive intervention.
Because of the rigorous methodology required by NICE Committee review and the inclusion of the testimony of people with lived experience as committee members, this guideline will influence the future diagnosis and management of ME/CFS in the UK and beyond.
Keywords:
ME/CFS; ME; understanding; diagnosis; management; disabling; stigma
Twitter thread where I'm posting quite a number of extracts
https://www.mdpi.com/2227-9032/10/12/2438
What Primary Care Practitioners Need to Know about the New NICE Guideline for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults
by
Caroline Kingdon 1,*,Adam Lowe 2, Charles Shepherd 3 and Luis Nacul 1,4
1
CureME, Clinical Research Department, London School of Hygiene and Tropical Medicine, London WC1E 7HT, UK
2
Centre for New Writing in the School of Arts, Languages and Cultures, University of Manchester, Oxford Rd, Manchester M13 9PL, UK
3
Myalgic Encephalomyelitis Association (MEA), 7 Apollo Office Court, Buckingham MK18 4DF, UK
4
B.C. Women’s Hospital & Health Centre, Complex Diseases Program, Vancouver, BC V6H 3N1, Canada
* Author to whom correspondence should be addressed.
Healthcare 2022, 10(12), 2438; https://doi.org/10.3390/healthcare10122438
Received: 19 October 2022 / Revised: 29 November 2022 / Accepted: 30 November 2022 / Published: 2 December 2022
(This article belongs to the Collection Why Some Patients Never Fully Recover: Post Active Phase of Infection Syndromes (PAPIS))
Download Review Reports Versions Notes
Abstract
The new NICE guideline for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), published in October 2021, makes significant changes in treatment recommendations.
It acknowledges the complexity of this chronic medical condition, which always impacts quality of life and can be profoundly disabling, recognising the prejudice and stigma that people with ME/CFS often experience in the absence of any specific diagnostic test.
The guideline outlines steps for accurate diagnosis, recognising post-exertional malaise as a core symptom; importantly, ME/CFS can now be diagnosed after just 3 months in a bid to improve long-term health outcomes.
It recommends the need for individual, tailored management by a multi-disciplinary team, ensuring that the wellbeing of the individual is paramount.
The guideline makes clear that any programme based on fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (GET), should not be offered as a treatment for ME/CFS and emphasises that cognitive behavioural therapy (CBT) should only be offered as a supportive intervention.
Because of the rigorous methodology required by NICE Committee review and the inclusion of the testimony of people with lived experience as committee members, this guideline will influence the future diagnosis and management of ME/CFS in the UK and beyond.
Keywords:
ME/CFS; ME; understanding; diagnosis; management; disabling; stigma
Twitter thread where I'm posting quite a number of extracts