Chalder fatigue scale

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The Chalder fatigue scale (CFQ) is a questionnaire created by the research team of Trudie Chalder at King's College London to measure the severity of tiredness in fatiguing illnesses.[1] The Fatigue Scale has been used in multiple randomized trials of behavioral interventions in patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS),[2][3][4] including the PACE trial.[5] While the scale has good internal consistency[6][7] and convergent validity,[8] it has been criticized for having ceiling effects[9][10] and other operational flaws.[11]

Background[edit | edit source]

Origin[edit | edit source]

The Chalder fatigue scale was developed by the research team of Trudie Chalder at King's College London in 1993.[1] The scale was based on a similar questionnaire that had been used in a hospital-based case study comparing ME/CFS patients to patients with neuromuscular and affective illnesses[12], and a study testing the efficacy of cognitive behavioral therapy (CBT) in ME/CFS patients[13]

From 14 to 11 items[edit | edit source]

Three versions of the CFQ exist. Originally the scale had 14 questions but following a principal component analysis (PCA) and item discriminative properties based on receiver-operating characteristic (ROC) analysis, 3 items were excluded.[1]  While the 14-item scale was used in several studies in the 1990s, the 11-item version is the most used version, today. 

  1. Do you have problems with tiredness?
  2. Do you need to rest more?
  3. Do you feel sleepy or drowsy?
  4. Do you have problems starting things?
  5. Do you lack energy?
  6. Do you have less strength in your muscles?
  7. Do you feel weak?
  8. Do you have difficulties concentrating?
  9. Do you make slips of the tongue when speaking?
  10. Do you find it more difficult to find the right word?
  11. How is your memory?

The deteled items from the 14-item scale are:

  • Do you start things without difficulty but get weak as you go on?
  • Do you think as clearly as usual?
  • Are you still interested in the things you used to do?

Likert or bimodal scoring[edit | edit source]

The Chalder fatigue has two scoring system. In the bimodal scoring system, respondents answer each question with a 1 or a 0 to indicate the questions apply to them or not. In the Likert scoring system, respondents can give a score of 0 to 3 to indicate how each statement applies to them, from “less than usual” to “much more than usual”.[14] 

Scoring schemes for the Chalder Fatigue Scale
Bimodal score Likert score
Less than usual 0 0
No more than usual 0 1
More than usual 1 2
Much more than usual 1 3

While the first version counts the number of symptoms, the other weights the intensity of the symptoms. Some have argued that these changes should not be seen as merely different scoring schemes, but as different versions of the same scale.[11] In the PACE trial both scoring schemes of the Chalder fatigue scale were recorded. The data showed that 22 participants showed improvement at the primary trial endpoint based on one scoring method, while the other scoring method showed a decline.[15]

Physical and mental fatigue[edit | edit source]

The 11-item chalder fatigue scale is often divided into two components: one that measures physical fatigue (questions 1-7) and one that measures mental fatigue (questions 8-11).[1] These components were confirmed by an analysis of a sample of 361 ME/CFS patients and 1615 healthy persons.[6]  Other analyses however found only 1[8][16][17] or more than two components[18][19] in the 11-item Chalder fatigue scale.

Reliability[edit | edit source]

Internal consistency and convergent validity[edit | edit source]

The Chalder fatigue scale has been shown to have good internal consistency, as indicated by a split half reliabilities of 0.85[1] and a Cronbach alpha that ranges between 0.86 and 0.92.

Cronbach alpha for the 11-item fatigue scale
Chalder et al. 1993[1] 0.88-0.90
Loge et al. 1998[7] 0.86
Cella et al. 2010[6] 0.88-0.92
Wong & Fielding 2010[20] 0,86

De Vries et al. 2003 demonstrated that the CFQ had good test-retest reliability and convergent validity, as it correlated strongly with other fatigue questionnaires.[8] This was confirmed by Jason et al. who noted a good correlation between the CFQ and the fatigue severity scale by Krupp et al.[21] 

The correlation of the CFQ with other measures of health has been conflicting. Fong et al.[19] noted that the CFQ correlated modestly with a poor physical and mental quality of life, while Wong & Fielding found that the CFQ was weakly correlated with physical quality of life.[20] According to Jason et al. the CFQ correlated poorly with characteristic CFS-symptoms such as post-exertional malaise (PEM) or muscle pain, compared to another fatigue questionnaire.[21]

Content validity[edit | edit source]

Some authors have questioned whether the CFQ adequately assesses fatigue. Morris et al.[18] noted that the item “feeling sleepy or drowsy” seems more related to sleepiness and problems with maintaining sleep at night, than fatigue. Tom Kindlon has argued that the item “do you have problems starting things” seems more related to motivation instead of fatigue.[22] Both these questioned received low scores in a study of ME patients.[23]Wilshere et al.[11] pointed out that four items of the CFQ measure cognitive difficulties (difficulties concentrating, slips of the tongue, difficulty finding the right word and memory problems) instead of fatigue. Since a bimodal score of four or more on the CFQ has been defined as caseness of fatigue,  it’s possible for a patient to be a fatigue case if their only symptoms are these neurological symptoms.  A detailed critique of the CFQ, written by members of the online forum Science for ME, concluded:
“The scale assumes that memory problems, speech errors, sleepiness/drowsiness, muscle weakness and so on are indicators of fatigue, and that the more such symptoms a patient reports, the greater their overall fatigue. These assumptions are untested and their basis is unclear.”[11] 

Discrimination[edit | edit source]

The Chalder fatigue scale has been used in studies of various diseases such as cancer,[24]multiple sclerosis (MS),[25] and rheumatoid arthritis.[16] It has been translated into different languages including Brazilian[26] and Chinese.[17] The use of the CFQ in patients with ME/CFS, however, has been criticized. Most studies on the validity of the CFQ in this patient population used the Oxford criteria, a definition of ME/CFS that has been rejected by American health authorities.[27][28]

Cella et al.[6] reported that high scores on the CFQ effectively discriminate between ME/CFS patients and the general population. In their study, a person with a Likert score of 29, had less than a 5% chance of not having CFS. Good sensitivity of the CFQ in selecting patients with ME/CFS was confirmed by Jason et al.[21]The same study indicated however, that the CFQ lacks adequate specificity: some patients without ME/CFS also obtained high scores.

High sensitivity but low specificity was also the conclusion of a study that used the CFQ as an early screening tool in making the diagnosis of ME/CFS. While the CFQ was able to distinguish ME/CFS patients from healthy persons, it failed to differentiate ME/CFS from other fatiguing illnesses such as multiple sclerosis  and lupus.[29] A further study by Friedberg & Jason concluded that the CFQ was unable to distinguish individuals with CFS from those with primary depression.[30]

Only one studied the validity of the CFQ in patients with ME. Goudsmit et al.[23] report that the fatigue scale failed to discriminate between patients with moderate and severe ME. There was a large overlap in fatigue scores between these two groups. In a study of 168 CFS patients, the total score of the CFQ was unable to differentiatie patients on long-term sick leave from those who remained able to work.[31]

Criticism[edit | edit source]

Ceiling effects[edit | edit source]

The use of the Chalder Fatigue Scale in ME/CFS has been criticized because ME/CFS patients often record the maximum score on most of the 11 questions.[10] As a result, patients can no longer indicate a worsening of their fatigue, a phenomenon that is called the ceiling effect. This can influence the findings of randomized trials. As explained by Rebecca Goldin
“Let us suppose for a moment that 100 people are experiencing extreme fatigue. They each answer “much worse than usual” on the Questionnaire (a 3) to all 11 questions, resulting in a score of 33. Over the course of a year, there are random fluctuations in their health—half get worse, and half get better.  Now they take the questionnaire again. Those who get worse still answer “3” to all questions (final score: 33). Those who improve now answer a “2” to all questions, stating that they are just “worse than usual” but not “much worse” (final score: 22). The new average is now 27.5, a significant improvement over the original score of 33.”[32]
In other words, if patients record the maximum score and half of them improve while the other half deteriorates during follow-up then only the improvement will become visible on the questionnaire.[22]

Bart Stouten[9] calculated lower bounds for the number of items with the maximum score on the CFQ for several behavioral intervention studies. High ceiling effects were noted in multiple trials. In the randomized trials of Deale et al. and Powell et al. the intervention group recorded the maximum bimodal score on more than 90% of the questions on the CFQ. A study on 25 patients with ME, found that 50% of the patients recorded the maximum score using the bimodal method.  

The problem is less pronounced using the Likert score, though 15% of ME patients still indicated the maximum score of 33. In the FINE and PACE trial, 29.1% and 14.5% of the participants respectively scored the maximum score at baseline.”[22]

Problems with the Likert score[edit | edit source]

Due to ceiling effects, the Likert scoring has become the more popular version of the CFQ. The PACE trial, for example, changed their primary outcome of fatigue from bimodal scoring as chosen by the protocol, to Likert scoring.[5]

Separate problems have been noted with this scoring method. The introduction to this version of the CFQ, asks respondents to compare themselves to how they felt when they were last well.[14]  A response of ‘no more than usual’ (score 1) would thus indicate full recovery. Persons without fatigue problems would score 11/33, indicating that they had fatigue ‘no more than usual’.[22]  Indeed, the use of the CFQ in healthy community samples yielded scores of 12-14.[33][6][7]

The Likert score of the CFQ also offers the option “less than usual” (score 0). It’s not clear what such an answer means. It seems to indicate an abnormal absence of fatigue complaints. Evidence that this option confuses respondents, comes from a trial on cognitive behavioral therapy in patients with multiple sclerosis. Post-treatment MS patients recorded a score of less than 10, indicating they had less fatigue than healthy persons. Even the control which received relaxation therapy had lower fatigue scores than healthy persons.[25] This may indicate that they misinterpreted the "less than usual” (score 0) option, or that their "healthy" level involved some level of tiredness that disappeared with treatment, or simply that they felt abnormally alert. Results like these can question the reliability of the Likert scoring system of the CFQ. 

Clinical useful difference and similar terms

In the PACE Trial, a post-hoc analysis defined a clinical useful difference as a change of 2 or more. a This was questioned by Giakoumakis. b

This contrasted with a statement in an earlier paper c:

“Because the Chalder fatigue scale is relatively new, there is no published definition of equivalence. The researchers in this trial include several of those involved in developing and testing the instrument. Our consensus view was that a difference of less than four, using a Likert scale, is not important.” The researchers in the trial included Trudie Chalder (one of the principal investigators in the PACE Trial) and Simon Wessely. d

a. White PD, Goldsmith KA, Johnson AL et al. on behalf of the PACE trial management group Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet. 2011; 377: 823-836

b. Giakoumakis J. The PACE trial in chronic fatigue syndrome. Lancet. 2011, 377:1831

c. Ridsdale L, Godfrey E, Seed P: Chronic Fatigue in general practice: authors reply. Br J Gen Pract 2001, 51:317–318.

d. Ridsdale L, Godfrey E, Chalder T, Seed P, King M, Wallace P, Wessely S; Fatigue Trialists' Group. Chronic fatigue in general practice: is counselling as good as cognitive behaviour therapy? A UK randomised trial. Br J Gen Pract. 2001 51:19-24.

Notable studies[edit | edit source]

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. 1.01.11.21.31.41.5 Chalder, T.; Berelowitz, G.; Pawlikowska, T.; Watts, L.; Wessely, S.; Wright, D.; Wallace, E. P. (1993). "Development of a fatigue scale". Journal of Psychosomatic Research. 37 (2): 147–153. ISSN 0022-3999. PMID 8463991. 
  2. Deale, A.; Chalder, T.; Marks, I.; Wessely, S. (Mar 1997). "Cognitive behavior therapy for chronic fatigue syndrome: a randomized controlled trial". The American Journal of Psychiatry. 154 (3): 408–414. doi:10.1176/ajp.154.3.408. ISSN 0002-953X. PMID 9054791. 
  3. Powell, P.; Bentall, R. P.; Nye, F. J.; Edwards, R. H. (Feb 17, 2001). "Randomised controlled trial of patient education to encourage graded exercise in chronic fatigue syndrome". BMJ (Clinical research ed.). 322 (7283): 387–390. ISSN 0959-8138. PMID 11179154. 
  4. Wearden, Alison J.; Dowrick, Christopher; Chew-Graham, Carolyn; Bentall, Richard P.; Morriss, Richard K.; Peters, Sarah; Riste, Lisa; Richardson, Gerry; Lovell, Karina (Apr 23, 2010). "Nurse led, home based self help treatment for patients in primary care with chronic fatigue syndrome: randomised controlled trial". BMJ (Clinical research ed.). 340: c1777. doi:10.1136/bmj.c1777. ISSN 1756-1833. PMC 2859122Freely accessible. PMID 20418251. 
  5. 5.05.15.2 White, P. D.; Goldsmith, K. A.; Johnson, A. L.; Potts, L.; Walwyn, R.; DeCesare, J. C.; Baber, H. L.; Burgess, M.; Clark, L. V. (Mar 5, 2011). "Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial". Lancet (London, England). 377 (9768): 823–836. doi:10.1016/S0140-6736(11)60096-2. ISSN 1474-547X. PMC 3065633Freely accessible. PMID 21334061. 
  6. 6.06.16.26.36.46.5 Cella, Matteo; Chalder, Trudie (Jul 2010). "Measuring fatigue in clinical and community settings". Journal of Psychosomatic Research. 69 (1): 17–22. doi:10.1016/j.jpsychores.2009.10.007. ISSN 1879-1360. PMID 20630259. 
  7. 7.07.17.2 Loge, J. H.; Ekeberg, O.; Kaasa, S. (Jul 1998). "Fatigue in the general Norwegian population: normative data and associations". Journal of Psychosomatic Research. 45 (1): 53–65. ISSN 0022-3999. PMID 9720855. 
  8. 8.08.18.2 De Vries, J; Michielsen, H; Van Heck, G L (Jun 2003). "Assessment of fatigue among working people: a comparison of six questionnaires". Occupational and Environmental Medicine. 60 (Suppl 1): i10–i15. doi:10.1136/oem.60.suppl_1.i10. ISSN 1351-0711. PMC 1765720Freely accessible. PMID 12782741. 
  9. 9.09.1 Stouten, Bart (May 13, 2005). "Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution". BMC health services research. 5: 37. doi:10.1186/1472-6963-5-37. ISSN 1472-6963. PMC 1175848Freely accessible. PMID 15892882. 
  10. 10.010.1 Kindlon, Tom (Feb 13, 2019). "Data on the level of maximal scoring (on the Chalder Fatigue Scale) would be useful". 
  11. 11.011.111.211.3 "S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire". Science for ME. Retrieved Feb 15, 2019. 
  12. Wessely, S; Powell, R (Aug 1989). "Fatigue syndromes: a comparison of chronic "postviral" fatigue with neuromuscular and affective disorders". Journal of Neurology, Neurosurgery, and Psychiatry. 52 (8): 940–948. ISSN 0022-3050. PMC 1031831Freely accessible. PMID 2571680. 
  13. Butler, S; Chalder, T; Ron, M; Wessely, S (Feb 1991). "Cognitive behaviour therapy in chronic fatigue syndrome". Journal of Neurology, Neurosurgery, and Psychiatry. 54 (2): 153–158. ISSN 0022-3050. PMC 1014351Freely accessible. PMID 2019842. 
  14. 14.014.1 goodmedicine.org.uk. Chalder Fatigue Scale.
  15. Dataset available at https://sites.google.com/site/pacefoir/pace-ipd_foia-qmul-2014-f73.xlsx?attredirects=0, ‘readme’ file https://sites.google.com/site/pacefoir/pace-ipd-readme.txt?attredirects=0
  16. 16.016.1 Chalder, Trudie; Ali, Sheila; Matcham, Faith; Norton, Sam (Apr 1, 2016). "126 Psychometric Properties of Two Fatigue Scales in Rheumatology Outpatients: Unidimensional Scales Measuring Multifaceted Constructs". Rheumatology. 55 (suppl_1): i113–i114. doi:10.1093/rheumatology/kew130.010. ISSN 1462-0324. 
  17. 17.017.1 Jing, Meng-Juan; Lin, Wei-Quan; Wang, Qiang; Wang, Jia-Ji; Tang, Jie; Jiang, En-She; Lei, Yi-Xiong; Wang, Pei-Xi (Jan 2016). "Reliability and Construct Validity of Two Versions of Chalder Fatigue Scale among the General Population in Mainland China". International Journal of Environmental Research and Public Health. 13 (1). doi:10.3390/ijerph13010147. ISSN 1661-7827. PMC 4730538Freely accessible. PMID 26805863. 
  18. 18.018.118.2 Morriss, R. K.; Wearden, A. J.; Mullis, R. (Nov 1998). "Exploring the validity of the Chalder Fatigue scale in chronic fatigue syndrome". Journal of Psychosomatic Research. 45 (5): 411–417. ISSN 0022-3999. PMID 9835234. 
  19. 19.019.1 Fong, Ted C. T.; Chan, Jessie S. M.; Chan, Cecilia L. W.; Ho, Rainbow T. H.; Ziea, Eric T. C.; Wong, Vivian C. W.; Ng, Bacon F. L.; Ng, S. M. (Sep 2015). "Psychometric properties of the Chalder Fatigue Scale revisited: an exploratory structural equation modeling approach". Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation. 24 (9): 2273–2278. doi:10.1007/s11136-015-0944-4. ISSN 1573-2649. PMC 4529874Freely accessible. PMID 25688039. 
  20. 20.020.1 Wong, Wing S.; Fielding, Richard (Jan 2010). "Construct validity of the Chinese version of the Chalder Fatigue Scale in a Chinese community sample". Journal of Psychosomatic Research. 68 (1): 89–93. doi:10.1016/j.jpsychores.2009.05.008. ISSN 1879-1360. PMID 20004305. 
  21. 21.021.121.2 Jason, Leonard A.; Evans, Meredyth; Brown, Molly; Porter, Nicole; Brown, Abigail; Hunnell, Jessica; Anderson, Valerie; Lerch, Athena (2011). "Fatigue Scales and Chronic Fatigue Syndrome: Issues of Sensitivity and Specificity". Disability Studies Quarterly. 31 (1). ISSN 2159-8371. PMC 3181109Freely accessible. PMID 21966179. 
  22. 22.022.122.222.3 "My feedback on content of CDEs (Fatigue) - Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) CDE Public Review". Science for ME. Retrieved Feb 16, 2019. 
  23. 23.023.1 Goudsmit et al. (2008) Fatigue in Myalgic Encephalomyelitis.
  24. Armes, Jo; Chalder, Trudie; Addington-Hall, Julia; Richardson, Alison; Hotopf, Matthew (Sep 15, 2007). "A randomized controlled trial to evaluate the effectiveness of a brief, behaviorally oriented intervention for cancer-related fatigue". Cancer. 110 (6): 1385–1395. doi:10.1002/cncr.22923. ISSN 0008-543X. PMID 17661342. 
  25. 25.025.1 van Kessel, Kirsten; Moss-Morris, Rona; Willoughby, Ernest; Chalder, Trudie; Johnson, Malcolm H.; Robinson, Elizabeth (Feb 2008). "A randomized controlled trial of cognitive behavior therapy for multiple sclerosis fatigue". Psychosomatic Medicine. 70 (2): 205–213. doi:10.1097/PSY.0b013e3181643065. ISSN 1534-7796. PMID 18256342. 
  26. Cho, Hyong Jin; Costa, Erico; Menezes, Paulo Rossi; Chalder, Trudie; Bhugra, Dinesh; Wessely, Simon (Mar 2007). "Cross-cultural validation of the Chalder Fatigue Questionnaire in Brazilian primary care". Journal of Psychosomatic Research. 62 (3): 301–304. doi:10.1016/j.jpsychores.2006.10.018. ISSN 0022-3999. PMID 17324680. 
  27. Green, Carmen R.; Cowan, Penney; Elk, Ronit; O'Neil, Kathleen M.; Rasmussen, Angela L. (Jun 16, 2015). "National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Annals of Internal Medicine. 162 (12): 860–865. doi:10.7326/M15-0338. ISSN 1539-3704. PMID 26075757. 
  28. McDonagh, Marian; Wasson, Ngoc; Daeges, Monica; Pappas, Miranda; Haney, Elizabeth; Nelson, Heidi D.; Smith, M. E. Beth (Dec 2014). July 2016 Addendum. Agency for Healthcare Research and Quality (US). 
  29. Jason et al. (1997) A screening instrument for Chronic Fatigue Syndrome: Reliability and validity
  30. Friedberg F, Jason LA. Selecting a fatigue rating scale. The CFS Research Review. 2002; 35:7–11
  31. Chalder, Trudie; Harvey, Samuel B.; Henderson, Max; Knudsen, Ann Kristin (Nov 2011). "Long-term sickness absence among patients with chronic fatigue syndrome". The British Journal of Psychiatry. 199 (5): 430–431. doi:10.1192/bjp.bp.110.082974. ISSN 0007-1250. 
  32. sasusa (Mar 21, 2016). "PACE: The research that sparked a patient rebellion and challenged medicine". Sense About Science USA. Retrieved Feb 16, 2019. 
  33. Pawlikowska, T.; Chalder, T.; Hirsch, S. R.; Wallace, P.; Wright, D. J.; Wessely, S. C. (Mar 19, 1994). "Population based study of fatigue and psychological distress". BMJ (Clinical research ed.). 308 (6931): 763–766. ISSN 0959-8138. PMC 2539651Freely accessible. PMID 7908238. 
  34. Chalder, T; Berelowitz, G; Pawlikowska, T; Watts, L; Wessely, S; Wright, D; Wallace, EP (1993), "Development of a fatigue scale", J Psychosom Res, 37: 147-153, PMID 8463991 
  35. Cella, David; Dimmock, Mary; Friedberg, Fred; Lin, Jin-Mann Sally; Nacul, Luis; Saligan, Leorey (Dec 2017), NINDS/CDC Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Common Data Elements (CDE); Fatigue Subgroup Materials (PDF) 

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.

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.

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.

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.

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive 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.

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.

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.

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.

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.

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.

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.

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.

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.

somatic symptom disorder - A psychiatric term to describe an alleged condition whereby a person's thoughts somehow cause physical symptoms. The actual existence of such a condition is highly controversial, due to a lack of scientific evidence. It is related to other psychiatric terms, such as "psychosomatic", "neurasthenia", and "hysteria". Older terms include "somatization", "somatoform disorder", and "conversion disorder". Such terms refer to a scientifically-unsupported theory that claims that a wide range of physical symptoms can be created by the human mind, a theory which has been criticized as "mind over matter" parapsychology, a pseudoscience. Although "Somatic Symptom Disorder" is the term used by DSM-5, the term "Bodily Distress Disorder" has been proposed for ICD-11. (Learn more: www.psychologytoday.com)

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

Agency for Healthcare Research and Quality (AHRQ) - Agency for Healthcare Research and Quality is a United States government agency under the U.S. Department of Health and Human Services. Their mission is "to produce evidence to make health care safer, higher quality, more accessible, equitable, and affordable. A representative of the Agency for Healthcare Research and Quality sat on the (now disbanded) CFSAC committee as an Ex Officio Member.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.