Graded exercise therapy

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Increasingvalueschart-gradedexercise.png

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, regardless of how the patient is feeling and ignoring any increased symptoms or new symptoms. GET was offered as a primary treatment for ME/CFS to UK patients by the National Health Service (NHS), as specified in the NICE guidelines from 2007-2021, but the GET recommendation was removed by the 2021 NICE guidelines update because of high rates of harm.[1] 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.[2]

Alternative names used for graded exercise therapy include Graded Activity Management (GAM), and Graded Activity Therapy (GAT).[3][4][5]

Graded Activity Therapy is defined in several different ways:

Evidence[edit | edit source]

Patient reports of harm[edit | edit source]

Clinical trials have resulted in mixed results.[2][8][9] 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.[10][11] A number of severely ill patients have reported that starting Graded Exercise Therapy with 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.[9]

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.[12]

Physical fitness unchanged[edit | edit source]

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.[2][13][14] 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.[14]

Patient analysis of PACE results[edit | edit source]

Graham McPhee and others created videos investigating the PACE trial data in relation to GET.[15][16] Several re-analyses of the PACE trial results have been published since the detailed PACE trial data was released into the public domain.[14]

Fear of exercise[edit | edit source]

The PACE trial investigators have stated that they believe a significant maintaining factor in the persistence of ME/CFS is fear of exercise.[17] This claim has been criticized as unsupported by trial results.[18] A study by Nijs et al. in 2004 concluded:

Chronic Fatigue Syndrome: Lack of Association between Pain-Related Fear of Movement and Exercise Capacity and Disability

These results indicate a lack of correlation between kinesiophobia and exercise capacity, activity limitations, or participation restrictions, at least in patients with CFS who are experiencing widespread muscle or joint pain.

“
”
Jo Nij, Katrien Vanherberghen, William Duquet & Kenny De Meirleir (2004)


Doctors who are patients with ME/CFS[edit | edit source]

Graded exercise therapy and CBT. "As a physician bedridden with myalgic encephalomyelitis (ME) for more than a decade who is totally dependent on others, all thanks to a major relapse caused by GET, I am in a unique position to answer how harmful GET and cognitive behavioral therapy (CBT) really are. The basis of these therapies is false illness beliefs, meaning that it is all in the mind. These beliefs ignore all of the evidence that ME is a physical disease, such as intracellular immune dysfunctions, which not only restrict exercise capacity but also worsen with exercise (2)." - Maik Speedy (2015). Annals of Internal Medicine.
Graded exercise therapy caused a permanent relapse that left Dr Maik Speedy bedridden.


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:

NICE's 2019 patient survey[edit | edit source]

An independent patient survey of UK patients was comissioned by NICE in 2019, as part of the NHS guideline review process.[19]

Effects of GET on ME/CFS
improved no change worsened
physical health 13% 12% 67%
mental health 13% 26% 53%
ME/CFS symptoms after GET
yes no
one of more symptoms worsened because of GET 81% 13%
new symptom(s) developed because of GET 37%
Patient had severe ME/CFS
before treatment 13%
after treatment 35%

Articles explaining GET not appropriate for ME/CFS[edit | edit source]

Describing graded exercise in comparison with symptom-contingent graded exercise therapy or pacing

Criticism[edit | edit source]

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

CDC withdrawal of GET treatment[edit | edit source]

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.[36][37]

StopGET petitions[edit | edit source]

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[38]
  • 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)[39]

GET after COVID-19[edit | edit source]

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.[35]

See also
Post-COVID-19 illness and Long COVID.

Notable studies[edit | edit source]

  • 2004, Chronic Fatigue Syndrome: Lack of Association between Pain-Related Fear of Movement and Exercise Capacity and Disability [40] (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[2] (Abstract)
  • 2016, Exercise therapy for chronic fatigue syndrome[8] (Full Text)
  • 2016, Neurocognitive improvements after best-practice intervention for chronic fatigue syndrome: Preliminary evidence of divergence between objective indices and subjective perceptions.[41] (Abstract)
  • 2017, PACE investigators' response is misleading regarding patient survey results[42] (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 [43] (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[44] (Full text)

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. ↑ NICE Guideline Development Group (October 29, 2021). "Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome:diagnosis and management. NICE guideline". National Institute for Health and Care Excellence.
  2. ↑ 2.0 2.1 2.2 2.3 Twisk, Frank N.M.; Maes, Michael (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". Neuro Endocrinology Letters. 30 (3): 284–299. ISSN 0172-780X. PMID 19855350.
  3. ↑ 3.0 3.1 Campling, Frankie; Sharpe, Michael (July 2, 2008). Chronic Fatigue Syndrome. OUP Oxford. p. 157. ISBN 978-0-19-157971-4. GET is similar in many ways to CBT, but it concentrates more on changing coping behaviour rather than thinking. It might be better called graded activity therapy.
  4. ↑ 4.0 4.1 South Tees Specialist CFS/ME Service (2018). "Group Rehabilitation Programme for people with CFS / ME. SESSION 1" (PDF). South Tees Hospitals NHS Foundation. Slide 17. Retrieved November 3, 2021. GRADED EXERCISE THERAPY = GRADED ACTIVITY THERAPY
  5. ↑ "ELFT - Services - Bedfordshire Chronic Fatigue Service". East London NHS. October 30, 2021. Retrieved November 3, 2021. NICE recommended Cognitive Behaviour Therapy (CBT) and Graded Activity Management (GAM)
  6. ↑ Cheshire, Anna; Ridge, Damien; Clark, Lucy; White, Peter (January 30, 2020). "Guided graded Exercise Self-help for chronic fatigue syndrome: patient experiences and perceptions". Disability and Rehabilitation. 42 (3): 368–377. doi:10.1080/09638288.2018.1499822. ISSN 0963-8288. PMID 30325677.
  7. ↑ "Chronic Fatigue Syndrome (CFS)/ Myalgic Encephalopathy (ME) Management Programme". Salford Royal NHS Foundation Trust. 2018. Retrieved November 3, 2021. Scheduling Rest and Activity
    The aim of cognitive-behaviour and graded activity therapy is not simply to be more active, but to make activity and rest consistent, rather than symptom dependent. By doing this you will be able to gradually increase your ability to carry out everyday activities while slowly cutting down on excessive rest.
  8. ↑ 8.0 8.1 Larun, Lillebeth; Brurberg, Kjetil G.; Odgaard‐Jensen, Jan; Price, Jonathan R. (2016). "Exercise therapy for chronic fatigue syndrome". Cochrane Database of Systematic Reviews (6). doi:10.1002/14651858.CD003200.pub5. ISSN 1465-1858.
  9. ↑ 9.0 9.1 9.2 Vink, Mark; Vink-Niese, Alexandra (October 8, 2018). "Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review". Health Psychology Open. 5 (2). doi:10.1177/2055102918805187. ISSN 2055-1029. PMID 30305916.
  10. ↑ 10.0 10.1 Kindlon, Tom. "Bulletin of the IACFS/ME 59 Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". IACFSME.
  11. ↑ 11.0 11.1 "ME/CFS Illness Management Survey Results - "No decisions about me without me" Part 1" (PDF). meassociation.org. May 2015.
  12. ↑ Brown, Robin. "NICE stop harming ME/CFS patients - Take CBT and GET out of the CFS guidelines NOW! | Sign the Petition". Change.org. Retrieved November 13, 2018.
  13. ↑ Moss-Morris, Rona; Sharon, Cynthia; Tobin, Roseanne; Baldi, James C. (March 2005). "A Randomized Controlled Graded Exercise Trial for Chronic Fatigue Syndrome: Outcomes and Mechanisms of Change". Journal of Health Psychology. 10 (2): 245–259. doi:10.1177/1359105305049774. ISSN 1359-1053.
  14. ↑ 14.0 14.1 14.2 14.3 Wilshire, Carolyn; Kindlon, Tom; Matthees, Alem; McGrath, Simon (December 14, 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". Fatigue: Biomedicine, Health & Behavior. 5 (1): 43–56. doi:10.1080/21641846.2017.1259724. ISSN 2164-1846.
  15. ↑ "PACEindividuals". Vimeo. Retrieved October 13, 2018.
  16. ↑ "PACEgraph". Vimeo. Retrieved October 13, 2018.
  17. ↑ Torjesen, Ingrid (October 28, 2015). "Tackling fear about exercise produces long term benefit in chronic fatigue syndrome". BMJ. 351: h5771. doi:10.1136/bmj.h5771. ISSN 1756-1833. PMID 26511755.
  18. ↑ "Objective measures found a lack of improvement for CBT & GET in the PACE Trial: subjective improvements may simply represent response biases or placebo effects in this non-blinded trial". The BMJ. October 13, 2018.
  19. ↑ Forward-ME (April 3, 2019). "Forward-ME Executive Summary" (PDF). ME Association (pdf).
  20. ↑ Crowhurst, Greg (September 3, 2005). "Issues relating to Severe ME And Graded Exercise" (PDF). Stonebird.
  21. ↑ 21.0 21.1 Tuller, David (October 27, 2016). "For Chronic Fatigue Syndrome Sufferers, a Dubious Treatment Unravels". Undark. Retrieved November 27, 2018.
  22. ↑ Maxted, Camilla (August 6, 2017). "This Is Why I Quit Exercise Therapy". BuzzFeed. Retrieved November 29, 2018.
  23. ↑ Kindlon, Tom (March 20, 2017). "Do graded activity therapies cause harm in chronic fatigue syndrome?". Journal of Health Psychology. 22 (9): 1146–1154. doi:10.1177/1359105317697323. ISSN 1359-1053.
  24. ↑ Goudsmit, Ellen M.; Nijs, Jo; Jason, Leonard A.; Wallman, Karen E. (December 19, 2011). "Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document". Disability and Rehabilitation. 34 (13): 1140–1147. doi:10.3109/09638288.2011.635746. ISSN 0963-8288.
  25. ↑ Michiel, Tack (July 4, 2019). "Why Graded Exercise Therapy and Cognitive Behaviour Therapy are Controversial in Chronic Fatigue Syndrome". BMJ Medical Humanities Blog. Retrieved July 9, 2019.
  26. ↑ The ME Association (May 11, 2008). "ME Association position on graded exercise therapy (GET)". ME Association. Retrieved September 19, 2020.
  27. ↑ "Quotes About Exercise Intolerance from M.E. Experts". Myalgic Encephalomyelitis. Retrieved October 13, 2018.
  28. ↑ Núñez, Montserrat; Fernández-Solà, Joaquim; Nuñez, Esther; Fernández-Huerta, José-Manuel; Godás-Sieso, Teresa; Gomez-Gil, Esther (March 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". Clinical Rheumatology. 30 (3): 381–389. doi:10.1007/s10067-010-1677-y. ISSN 1434-9949. PMID 21234629.
  29. ↑ Kindlon, Tom (March 20, 2017). "Do graded activity therapies cause harm in chronic fatigue syndrome?". Journal of Health Psychology. 22 (9): 1146–1154. doi:10.1177/1359105317697323. ISSN 1359-1053.
  30. ↑ Goudsmit, Ellen M; Howes, Sandra (2017). "Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment". J Health Psychol. 22 (9): 1159-1167. doi:10.1177/1359105317707216.
  31. ↑ Rehmeyer, Julie; Tuller, David (March 18, 2018). "Opinion | Getting It Wrong on Chronic Fatigue Syndrome". New York Times. New York Times (published July 2018). Retrieved November 27, 2018.
  32. ↑ Wilshire, Carolyn E.; Kindlon, Tom; Courtney, Robert; Matthees, Alem; Tuller, David; Geraghty, Keith; Levin, Bruce (March 22, 2018). "Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT". BMC Psychology. 6 (1). doi:10.1186/s40359-018-0218-3. ISSN 2050-7283. PMC 5863477. PMID 29562932.
  33. ↑ Struthers, Caroline (November 29, 2018). "My complaint to the Cochrane Governing Board about the Cochrane review of Exercise for chronic fatigue syndrome". Healthy Control. Retrieved November 29, 2018.
  34. ↑ Forward-ME; Oxford Brookes University (April 3, 2019). "Forward-ME and Oxford Brookes University announce the results of patient survey on CBT and GET in ME/CFS". ME Association.
  35. ↑ 35.0 35.1 Forward-ME (August 27, 2020). "Letter re Covid-19 Management and Exercise Caution" (PDF).
  36. ↑ Trial By Error: The CDC Drops CBT/GET - Virology Blog
  37. ↑ Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - CDC.gov
  38. ↑ "STOP GRADED EXERCISE THERAPY TRIALS FOR ME/CFS". #MEAction. Retrieved October 20, 2018.
  39. ↑ "Archived Petition: Suspend all trials of graded exercise therapy in children and adults with ME/CFS". Petitions - UK Government and Parliament. Retrieved October 20, 2018.
  40. ↑ Nijs, Jo; Vanherberghen, Katrien; Duquet, William; De Meirleir, Kenny (August 1, 2004). "Chronic Fatigue Syndrome: Lack of Association Between Pain-Related Fear of Movement and Exercise Capacity and Disability". Physical Therapy. 84 (8). doi:10.1093/ptj/84.8.696. ISSN 1538-6724. These results indicate a lack of correlation between kinesiophobia and exercise capacity, activity limitations, or participation restrictions, at least in patients with CFS who are experiencing widespread muscle or joint pain.
  41. ↑ Cvejic, Erin; Lloyd, Andrew R.; Vollmer-Conna, Uté (2016). "Neurocognitive improvements after best-practice intervention for chronic fatigue syndrome: Preliminary evidence of divergence between objective indices and subjective perceptions". Comprehensive Psychiatry. 66: 166–175. doi:10.1016/j.comppsych.2016.02.002. ISSN 1532-8384. PMID 26995250.
  42. ↑ Kirke, Karen D (May 11, 2017). "PACE investigators' response is misleading regarding patient survey results". Journal of Health Psychology. 22 (9): 1168–1176. doi:10.1177/1359105317703787. ISSN 1359-1053.
  43. ↑ Wilshire, Carolyn E.; Kindlon, Tom; Courtney, Robert; Matthees, Alem; Tuller, David; Geraghty, Keith; Levin, Bruce (March 22, 2018). "Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT". BMC Psychology. 6 (1). doi:10.1186/s40359-018-0218-3. ISSN 2050-7283.
  44. ↑ Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS) (February 27, 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" (PDF). Oxford Brookes University.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

See Graded exercise therapy.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

See biopsychosocial model.

biopsychosocial model (BPS) - A school of thought, usually based in psychology, which claims illness and disease to be the result of the intermingling of biological, psychological and social causes. (Learn more: me-pedia.org)

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

randomized controlled trial (RCT) - A trial in which participants are randomly assigned to two groups, with one group receiving the treatment being studied and a control or comparison group receiving a sham treatment, placebo, or comparison treatment.

cognition Thought processes, including attention, reasoning, and memory.

bias Bias in research is "a systematic deviation of an observation from the true clinical state". (Learn more: me-pedia.org)

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

See cognitive behavioral therapy.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

See Centers for Disease Control and Prevention.

NICE guidelines Clinical guidelines used in the UK.

NICE guidelines Clinical guidelines used in the UK.

See ME/CFS.

NICE guidelines Clinical guidelines used in the UK.

cognition Thought processes, including attention, reasoning, and memory.

The BMJ (previously the British Medical Journal) is a weekly peer-reviewed medical journal.

BMJ The BMJ (previously the British Medical Journal) is a weekly peer-reviewed medical journal.

BMJ The BMJ (previously the British Medical Journal) is a weekly peer-reviewed medical journal.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

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