Graded Exercise Therapy

The new ME/CFS NICE Guideline Draft for consultation (2020) represents a major reversal in advice for clinicians: “The committee reinforced there is no therapy based on physical activity or exercise that is effective as a treatment or cure for ME/CFS.”

The Draft clearly instructs:  “Do not offer people with ME/CFS:
• any therapy based on physical activity or exercise as a treatment or cure for ME/CFS
• generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
• any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy, structured activity, or exercise programmes that are based on deconditioning as the cause of ME/CFS

Patients have repeatedly reported being harmed by GET. Back in 2002 the Chief Medical Officer’s (CMO’s) Working Group recognised that “substantial concerns exist regarding the potential for harm” in respect of graded exercise, and that patient reports “clearly indicate that the York review results do not reflect the full spectrum of patients’ experience.” Countess of Mar (Chairman Forward-ME) 2020 to the Dept. of Health

The NICE Guideline (2007 – 21) ignored those concerns and recommended GET and CBT, claiming they were the treatments with the greatest evidence of effectiveness. This resulted in CBT and GET becoming the standard treatment provided by the NHS CFS/ME clinics. The rationale for this approach was the erroneously belief that patients pay too much attention to their symptoms, are afraid of activity/exercise and become deconditioned.

The standard treatment for deconditioning is GET – as was made clear in the old NICE Guideline: “People with mild or moderate CFS/ME should be offered GET that includes planned increases in the duration of physical activity. The intensity should then be increased when appropriate, leading to aerobic exercise (that is, exercise that increases the pulse rate)”.

Tragically, that advice failed to take into account the cardinal symptom of ME/CFS – PEM or post exertional exacerbation of symptoms. It ignored the fact that by definition, patients with ME/CFS are made more ill by aerobic exercise! This has been unequivocally and repeatedly demonstrated by several research groups and confirmed by major govt. bodies in the US: the National Institutes of Health, the Center for Disease Control and the National Academy of Medicine. The pathology underlying ME/CFS patients’ intolerance of exertion is less clear, but involves a number of physiological abnormalities, including impaired energy generation.

For decades patients have reported that they were being harmed by exercise programmes such as GET, and they were ignored. It has taken a long time for research to clearly demonstrate that they were right and must be listened to.

Severely ill patients carefully analysed the PACE Trial research used to justify GET and CBT as treatments. They vividly exposed its flaws, but it took many years of denigration before scientists deigned to listen and recognise that their analyses were accurate. See many articles by David Tuller https://www.virology.ws/mecfs/

A major question remains: How is the suffering and probably permanent harm and disability caused to many thousands of patients over several decades, by incorrect harmful advice and GET and CBT ‘treatments’, to be redressed?

Contributors:

Members of the Workwell Team:
• Staci Stevens – Founder of the Workwell Foundation and Co-Vice President: International Association for CFS/ME;
• Dr Chris Snell – Former Chair of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) to the US Secretary for Health;
• Mark VanNess – Professor and Co-Chair, Health Exercise and Sport Sciences, University of the Pacific, California.

 Brian Hughes  Professor of Psychology, NUI Galway  – Author of Psychology in Crisis 2018 and Rethinking Psychology: Good Science, Bad Science, Pseudoscience 2016

Jonathan Edwards, Professor of Medicine, UCL – currently an advisor on research for the  NICE review of ME/CFS.

Resources.

Workwell Foundation: focuses on research facilitating an understanding of the biological basis for fatigue and post exertional malaise in ME/CFS and techniques for safe management. https://workwellfoundation.org

‘Graded exercise therapy does not restore the ability to work in ME/CFS – Rethinking of a Cochrane review’ Vink, Mark and Vink-Niese, Friso. ‘ IOS Press. Work, vol. 66, no. 2, pp. 283-308, 2020  https://content.iospress.com/articles/work/wor203174?s=09&fbclid=IwAR0ulLHnZ3PJ2xYpd1JTCaj6rGjWSYe_qc5ZGob2sgKUttVgiEJE5DalW2I

‘Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England’
Graham McPhee, Adrian Baldwin, Tom Kindlon, Brian M Hughes.  Journal of Health Psychology June 2019

An interview with Dr David Systrom and Lewellyn King describes the findings from invasive cardiopulmonary testing in exercise intolerant patients with an ME/CFS diagnosis. “.. a phenomenon called internal preload failure – the inability or unwillingness of large veins in the legs, abdomen, and pelvis to push blood up to the right side of the heart – is ubiquitous for ME/CFS patients.”

Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT   Carolyn E. Wilshire, Tom Kindlon, Robert Courtney, Alem Matthees, David Tuller, Keith Geraghty & Bruce Levin BMC Psychology volume 6, Article number: 6 (2018)

Journal of Health Psychology : Special issue on the PACE Trial – David F Marks  July 2017

Work by David Tuller exposing the PACE Trial:  Oct 21, 2015 – TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study   Oct 22, 2015 – TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second installment)   Oct 23, 2015 – TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final installment)

“Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes.”
Forward ME, Oxford Brookes University.Results of Patient Survey, 3 April 2019.

“Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England.” Graham McPhee, Adrian Baldwin, Tom Kindlon, Brian Hughes.  Journal of Health Psychology 2019  https://doi.org/10.1177/1359105319854532

Physios for ME: website set up by a group of physiotherapists in the UK with a special interest in Myalgic Encephalomyelitis. https://www.physiosforme.com

 

With thanks to Graham McPhee, Tom Kindlon and John Peters for their advice on  aspects of the PACE Trial and appropriate graphs.