Graded exercise therapy

Graded exercise therapy (GET) is a form of physical therapy for the treatment of chronic fatigue syndrome (CFS) where physical activity is gradually increased over time. It is a treatment offered to ME/CFS patients in the UK by the National Health Service (NHS) as specified in the NICE guidelines. The use of Graded Exercise Therapy as a treatment is based on the disputed deconditioning hypothesis, and the highly controversial biopsychosocial model (BPS) of ME/CFS.

Patient reports of harm
Clinical trials have resulted in mixed results. Surveys of patients conducted by patient charities have universally found Graded Exercise Therapy to be harmful, although a minority of patients found it helped them or simply ineffective. A number of severely ill patients have reported that starting Graded Exercise Therapy will moderate symptoms cause a severe escalation of symptoms, leaving them permanently worse. Two highly influential peer-reviewed articles often used to support the use of Graded Exercise Therapy, the Cochrane review and the PACE trial, have had widescale calls for retraction based on criticism of the scientific method and standards used.

Robin Brown, a British doctor with ME/CFS has created petition that many thousands have signed calling for GET and related CBT to be removed from the UK treatment guidelines immediately.

Physical fitness unchanged
A number of studies by proponents of GET have found that it did not improve fitness, when self-rated perception of fatigue did improve after GET, no improvements in exercise capacity were statistically significant. The controversial PACE trial's 6 minute walk test results showed those successfully completing GET were unable to walk as far as older patients awaiting a lung transplant or those with heart failure; data that was omitted from the original trial report.

Patient analysis of PACE results
Graham McPhee and others created videos investigating the PACE trial data in relation to GET. Several re-analyses of the PACE trial results have been published since the detailed PACE trial data was released into the public domain.

Fear of exercise
The PACE trial investigators have stated that they believe a significant maintaining factor in the persistence of ME/CFS is fear of exercise. This claim has been criticized as unsupported by trial results. A study by Nijs et al. in 2004 concluded:

Doctors who are patients with ME/CFS


A number of doctors diagnosed with ME/CFS have shared their personal experiences of graded exercise therapy or have spoken out against GET to both other doctors and patients. These include:
 * Robin Brown, author of M.E. and Me: A Doctor's Struggle with Chronic Fatigue Syndrome
 * Nina Muirhead, a British surgeon
 * Maik Speedy, who became severely ill as a result of GET and has not improved since
 * Mark Vink, a former marathon runner, GP, and Dutch national hockey captain with very severe ME, who published a study demonstrating his body responded to walking down the hall to the toilet in a similar way to elite athletes in competition

NICE's 2019 patient survey
An independent patient survey of UK patients was comissioned by NICE in 2019, as part of the NHS guideline review process.

Articles explaining GET not appropriate for ME/CFS

 * 2005, Issues relating to Severe ME And Graded Exercise
 * 2016, Worse Than the Disease: A popular therapy for chronic fatigue syndrome made many patients worse. Adding insult to injury, research supporting it is now unraveling.
 * 2017, This is why I quit Exercise Therapy
 * 2017, Do graded activity therapies cause harm in chronic fatigue syndrome?
 * 2018, Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document
 * Describing graded exercise in comparison with symptom-contingent graded exercise therapy or pacing


 * 2019, Why Graded Exercise Therapy and Cognitive Behaviour Therapy are Controversial in Chronic Fatigue Syndrome

Criticism

 * 2008, ME Association position on graded exercise therapy (GET) - ME Association
 * 2010, At the Invest in ME International ME Conference Doctor Paul Cheney said "The whole idea that you can take a disease like this and exercise your way to health is foolishness. It is insane".
 * 2011, Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
 * 2011, Health-related quality of life in patients with chronic fatigue syndrome: group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up (Full Text)
 * 2015, ME/CFS Illness Management Survey Results “No decisions about me without me”
 * 2016, Do graded activity therapies cause harm in chronic fatigue syndrome? (Full Text) - Tom Kindlon
 * 2016, Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial (Full Text)
 * 2016, Worse Than the Disease: A popular therapy for chronic fatigue syndrome made many patients worse. Adding insult to injury, research supporting it is now unraveling.
 * 2017, Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment (Full Text)
 * 2017, Getting it wrong on chronic fatigue syndrome
 * 2018, Rethinking the treatment of Chronic Fatigue Syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT (Full Text)
 * 2018, Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review (Full Text)
 * 2018, My complaint to the Cochrane Governing Board about the Cochrane review of Exercise for chronic fatigue syndrome - Caroline Struthers
 * 2019, Forward-ME and Oxford Brookes University announce the results of patient survey on CBT and GET in ME/CFS - Survey commissioned by NICE to help inform the review of the UK's ME/CFS treatment guidelines
 * Survey results showed the effects of GET were:
 * Physical health deteriorated in 67% of ME/CFS patients as a result of GET
 * Physical health improved in 13% of ME/CFS patients as a result of GET
 * One or more symptoms worsened in 81% because of GET, particularly pain and fatigue
 * One or more new symptoms developed in 37% because of GET
 * No symptoms worsened for 13% because of GET
 * Mental health deteriorated in 53% of ME/CFS patients as a result of GET
 * Mental health improved in 13% of ME/CFS patients as a result of GET


 * 2020, Letter re Covid-19 Management and Exercise Caution - Forward-ME

CDC withdrawal of GET treatment
July 3, 2017, The Centers for Disease Control and Prevention's (CDC) website Chronic Fatigue Syndrome page has been changed to "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)" and GET and CBT recommendations have been removed.

StopGET petitions
A number of different patients and patient charities have created #stopGET petitions to campaign for an end to graded exercise therapy treatment in ME/CFS:
 * Stop GET trials - MEAction
 * Stop harming ME/CFS patients - take CBT/GET out of NICE guidelines NOW. - Dr. Hng's UK petition to stop GET and CBT
 * The NICE guideline for CFS/ME is not fit for purpose and needs a complete revision - a petition the ME Association delivered to Andrew Dillon at NICE
 * Suspend all trials of graded exercise therapy in children and adults with ME/CFS - UK parliament petition (archived)

GET after COVID-19
Concerns have been raised about the potential harms of graded exercise therapy to patients who have developed fatigue or other symptoms after COVID-19, patients needing rehabilitation after COVID-19, and patients who may develop postviral ME/CFS after COVID-19.

Notable studies

 * 2004, Chronic Fatigue Syndrome: Lack of Association between Pain-Related Fear of Movement and Exercise Capacity and Disability (Full Text)
 * 2009, A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS (Abstract)
 * 2016, Exercise therapy for chronic fatigue syndrome (Full Text)
 * 2016, Neurocognitive improvements after best-practice intervention for chronic fatigue syndrome: Preliminary evidence of divergence between objective indices and subjective perceptions. (Abstract)
 * 2017, PACE investigators' response is misleading regarding patient survey results (Full Text)
 * 2018, Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT (Full Text)


 * 2019, Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes. FINAL REPORT (Full text)

Learn more

 * Consumer contested evidence: Why the ME/CFS exercise dispute matters so much - Hilda Bastian, 2019
 * For patients with CFS, going to the bathroom is similar to running a marathon. - Anil van der Zee
 * This is why I quit Exercise Therapy - Camilla Maxted, Buzzfeed
 * Chronic fatigue syndrome - GET, CBT and Counselling - NHS Scotland (2020)