Graded exercise therapy

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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.[1]

Evidence[edit | edit source]

Patient reports of harm[edit | edit source]

Clinical trials have resulted in mixed results.[1][2][3] 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.[4][5] 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.[3]

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.[6]

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.[1][7][8] 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.[8]

Patient analysis of PACE results[edit | edit source]

Graham McPhee and others created videos investigating the PACE trial data in relation to GET.[9][10] Several re-analyses of the PACE trial results have been published since the detailed PACE trial data was released into the public domain.[8]

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.[11] This claim has been criticized as unsupported by trial results.[12] 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.[13]

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.[30][31]

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[32]
  • 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)[33]

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.[29]

Notable studies[edit | edit source]

  • 2004, Chronic Fatigue Syndrome: Lack of Association between Pain-Related Fear of Movement and Exercise Capacity and Disability [34](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[1](Abstract)
  • 2016, Exercise therapy for chronic fatigue syndrome[2](Full Text)
  • 2016, Neurocognitive improvements after best-practice intervention for chronic fatigue syndrome: Preliminary evidence of divergence between objective indices and subjective perceptions.[35](Abstract)
  • 2017, PACE investigators' response is misleading regarding patient survey results[36](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 [37](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[38](Full text)

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. 1.01.11.21.3 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. 
  2. 2.02.1 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. 
  3. 3.03.13.2 Vink, Mark; Vink-Niese, Alexandra (Oct 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. 
  4. 4.04.1 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.org. 
  5. 5.05.1 "ME/CFS Illness Management Survey Results - "No decisions about me without me" Part 1" (PDF). meassociation.org. May 2015. 
  6. Brown, Robin. "NICE stop harming ME/CFS patients - Take CBT and GET out of the CFS guidelines NOW! | Sign the Petition". Change.org. Retrieved Nov 13, 2018. 
  7. Moss-Morris, Rona; Sharon, Cynthia; Tobin, Roseanne; Baldi, James C. (Mar 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. 
  8. 8.08.18.28.3 Wilshire, Carolyn; Kindlon, Tom; Matthees, Alem; McGrath, Simon (Dec 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. 
  9. "PACEindividuals". Vimeo. Retrieved Oct 13, 2018. 
  10. "PACEgraph". Vimeo. Retrieved Oct 13, 2018. 
  11. Torjesen, Ingrid (Oct 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. 
  12. "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. Oct 13, 2018. 
  13. Forward-ME (Apr 3, 2019). "Forward-ME Executive Summary" (PDF). ME Association (pdf). 
  14. Crowhurst, Greg (Sep 3, 2005). "Issues relating to Severe ME And Graded Exercise" (PDF). Stonebird. 
  15. 15.015.1 Tuller, David (Oct 27, 2016). "For Chronic Fatigue Syndrome Sufferers, a Dubious Treatment Unravels". Undark. Retrieved Nov 27, 2018. 
  16. Maxted, Camilla (Aug 6, 2017). "This Is Why I Quit Exercise Therapy". BuzzFeed. Retrieved Nov 29, 2018. 
  17. Kindlon, Tom (Mar 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. 
  18. Goudsmit, Ellen M.; Nijs, Jo; Jason, Leonard A.; Wallman, Karen E. (Dec 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. 
  19. Michiel, Tack (Jul 4, 2019). "Why Graded Exercise Therapy and Cognitive Behaviour Therapy are Controversial in Chronic Fatigue Syndrome". BMJ Medical Humanities Blog. Retrieved Jul 9, 2019. 
  20. The ME Association (May 11, 2008). "ME Association position on graded exercise therapy (GET)". ME Association. Retrieved Sep 19, 2020. 
  21. "Quotes About Exercise Intolerance from M.E. Experts". Myalgic Encephalomyelitis. Retrieved Oct 13, 2018. 
  22. Núñez, Montserrat; Fernández-Solà, Joaquim; Nuñez, Esther; Fernández-Huerta, José-Manuel; Godás-Sieso, Teresa; Gomez-Gil, Esther (Mar 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. 
  23. Kindlon, Tom (Mar 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; 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. 
  25. Rehmeyer, Julie; Tuller, David (Mar 18, 2018). "Opinion | Getting It Wrong on Chronic Fatigue Syndrome". New York Times. New York Times (published Jul 2018). Retrieved Nov 27, 2018. 
  26. Wilshire, Carolyn E.; Kindlon, Tom; Courtney, Robert; Matthees, Alem; Tuller, David; Geraghty, Keith; Levin, Bruce (Mar 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 5863477Freely accessible. PMID 29562932. 
  27. Struthers, Caroline (Nov 29, 2018). "My complaint to the Cochrane Governing Board about the Cochrane review of Exercise for chronic fatigue syndrome". Healthy Control. Retrieved Nov 29, 2018. 
  28. Forward-ME; Oxford Brookes University (Apr 3, 2019). "Forward-ME and Oxford Brookes University announce the results of patient survey on CBT and GET in ME/CFS". ME Association. 
  29. 29.029.1 Forward-ME (Aug 27, 2020). "Letter re Covid-19 Management and Exercise Caution" (PDF). 
  30. Trial By Error: The CDC Drops CBT/GET - Virology Blog
  31. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - CDC.gov
  32. "STOP GRADED EXERCISE THERAPY TRIALS FOR ME/CFS". #MEAction. Retrieved Oct 20, 2018. 
  33. "Archived Petition: Suspend all trials of graded exercise therapy in children and adults with ME/CFS". Petitions - UK Government and Parliament. Retrieved Oct 20, 2018. 
  34. Nijs, Jo; Vanherberghen, Katrien; Duquet, William; De Meirleir, Kenny (Aug 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. 
  35. 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. 
  36. 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. 
  37. Wilshire, Carolyn E.; Kindlon, Tom; Courtney, Robert; Matthees, Alem; Tuller, David; Geraghty, Keith; Levin, Bruce (Mar 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. 
  38. Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS) (Feb 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.

chronic fatigue syndrome (CFS) - A fatigue-based illness. The term CFS was invented invented by the U.S. Centers for Disease Control as an replacement for myalgic encephalomyelitis (ME). Some view CFS as a neurological disease, others use the term for any unexplained long-term fatigue. Sometimes used as a the term as a synonym of myalgic encephalomyelitis, despite the different diagnostic criteria.

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.

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: Biopsychosocial model me-pedia.org)

ME/CFS - An acronym that combines myalgic encephalomyelitis with chronic fatigue syndrome. Sometimes they are combined because people have trouble distinguishing one from the other. Sometimes they are combined because people see them as synonyms of each other.

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.

myalgic encephalomyelitis (ME) - 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.

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.

pacing - The practice of staying within one's "energy envelope" or personal limit by combining periods of activity with periods of rest or avoiding exerting beyond a certain level. ME/CFS patients use pacing to avoid or reduce post-exertional malaise (PEM). Some patients use a heart rate monitor to help with pacing.

chronic fatigue syndrome (CFS) - A fatigue-based illness. The term CFS was invented invented by the U.S. Centers for Disease Control as an replacement for myalgic encephalomyelitis (ME). Some view CFS as a neurological disease, others use the term for any unexplained long-term fatigue. Sometimes used as a the term as a synonym of myalgic encephalomyelitis, despite the different diagnostic criteria.

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.

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.

bias - Bias in research is "a systematic deviation of an observation from the true clinical state".

chronic fatigue syndrome (CFS) - A fatigue-based illness. The term CFS was invented invented by the U.S. Centers for Disease Control as an replacement for myalgic encephalomyelitis (ME). Some view CFS as a neurological disease, others use the term for any unexplained long-term fatigue. Sometimes used as a the term as a synonym of myalgic encephalomyelitis, despite the different diagnostic criteria.

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.

myalgic encephalomyelitis (ME) - 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.

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.

NICE guidelines - Clinical guidelines used in the UK.

NICE guidelines - Clinical guidelines used in the UK.

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

myalgic encephalomyelitis (ME) - 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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From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.