Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies

Abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome leads to severe functional impairment and work disability in a considerable number of patients. The majority of patients who manage to continue or return to work, work part-time instead of full time in a physically less demanding job. The prognosis in terms of returning to work is poor if patients have been on long-term sick leave for more than two to three years.

Being older and more ill when falling ill are associated with a worse employment outcome. Cognitive behavioural therapy and graded exercise therapy do not restore the ability to work. Consequently, many patients will eventually be medically retired depending on the requirements of the retirement policy, the progress that has been made since they have fallen ill in combination with the severity of their impairments compared to the sort of work they do or are offered to do.

However, there is one thing that occupational health physicians and other doctors can do to try and prevent chronic and severe incapacity in the absence of effective treatments. Patients who are given a period of enforced rest from the onset, have the best prognosis. Moreover, those who work or go back to work should not be forced to do more than they can to try and prevent relapses, long-term sick leave and medical retirement.

Source: Vink M, Vink-Niese F. Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies. Diagnostics (Basel). 2019 Sep 20;9(4). pii: E124. doi: 10.3390/diagnostics9040124. https://www.ncbi.nlm.nih.gov/pubmed/31547009

Multidisciplinary rehabilitation treatment versus cognitive behavioural therapy for patients with chronic fatigue syndrome: a randomized controlled trial

Abstract:

OBJECTIVES: The aim of this trial was to evaluate the difference in treatment effect, at 26 and 52 weeks after the start of treatment, between cognitive behavioural therapy (CBT) and multidisciplinary rehabilitation treatment (MRT) for patients with chronic fatigue syndrome (CFS).

DESIGN: Multicentre, randomized controlled trial of patients with CFS. Participants were randomly assigned to MRT or CBT.

SETTING: Four rehabilitation centres in the Netherlands.

SUBJECTS: A total of 122 patients participated in the trial.

MAIN OUTCOME MEASURES: Primary outcomes were fatigue measured by the fatigue subscale of the Checklist Individual Strength and health-related quality of life measured by the Short-Form 36. Outcomes were assessed prior to treatment and at 26 and 52 weeks after treatment initiation.

RESULTS: A total of 114 participants completed the assessment at 26 weeks, and 112 completed the assessment at 52 weeks. MRT was significantly more effective than CBT in reducing fatigue at 52 weeks. The estimated difference in fatigue between the two treatments was -3.02 [95% confidence interval (CI) -8.07 to 2.03; P = 0.24] at 26 weeks and -5.69 (95% CI -10.62 to -0.76; P = 0.02) at 52 weeks. Patients showed an improvement in quality of life over time, but between-group differences were not significant.

CONCLUSION: This study provides evidence that MRT is more effective in reducing long-term fatigue severity than CBT in patients with CFS. Although implementation in comparable populations can be recommended based on clinical effectiveness, it is advisable to analyse the cost-effectiveness and replicate these findings in another multicentre trial.

© 2015 The Association for the Publication of the Journal of Internal Medicine.

 

Source: Vos-Vromans DC, Smeets RJ, Huijnen IP, Köke AJ, Hitters WM, Rijnders LJ, Pont M, Winkens B, Knottnerus JA. Multidisciplinary rehabilitation treatment versus cognitive behavioural therapy for patients with chronic fatigue syndrome: a randomized controlled trial. J Intern Med. 2016 Mar;279(3):268-82. doi: 10.1111/joim.12402. Epub 2015 Aug 26. https://www.ncbi.nlm.nih.gov/pubmed/26306716

 

Experiences of daily activity in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their implications for rehabilitation programmes

Abstract:

PURPOSE: Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis (CFS/ME), has a significant impact upon daily functioning. Most recommended treatments aim to alter activity patterns based upon assumptions of activity avoidance. However, as there is limited research on the experience of activity and occupational beliefs in people with CFS/ME, this study took a qualitative approach to understand the meaning of activity in people with this disabling condition.

METHOD: This study applied a social constructivist grounded theory methodology. Semi-structured interviews took place with 14 participants attending a Specialist CFS/ME Service in England.

FINDINGS: The emergent themes described a premorbid state of constant action with difficulty stopping an activity once it had commenced. When this pattern was interrupted by illness, participants attempted to maintain their previous level of occupational engagement. Negative associations and emotions were described in response to the concept of doing nothing or limited activity. A recurring cycle was reported of increasing activity levels when symptoms improved, followed by post exertional symptoms.

CONCLUSIONS: Consequently, participants’ beliefs about concepts of both activity and inactivity need to be considered within the application of rehabilitation programmes for CFS/ME that aim to modify activity related behaviours.

IMPLICATIONS FOR REHABILITATION: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is commonly treated in the UK using activity modification. In this small qualitative study, patients expressed negative feelings and beliefs towards the concept of doing nothing and therefore sought to push their activity levels when this was available, leading to recurring cycles of symptoms and activity. Rehabilitation programmes need to consider how people with CFS/ME engaged with activity and inactivity before the condition and how this may impact upon engagement with activity-based rehabilitation programmes.

 

Source: Pemberton S, Cox DL. Experiences of daily activity in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their implications for rehabilitation programmes. Disabil Rehabil. 2014;36(21):1790-7. doi: 10.3109/09638288.2013.874503. Epub 2013 Dec 27. https://www.ncbi.nlm.nih.gov/pubmed/24369769

 

Mediators of the effects on fatigue of pragmatic rehabilitation for chronic fatigue syndrome

Abstract:

OBJECTIVE: To examine potential mediators of the effect of pragmatic rehabilitation on improvements in fatigue following a randomized controlled trial for patients with chronic fatigue syndrome (CFS/ME) in primary care (IRCTN 74156610).

METHOD: Patients fulfilled the Oxford criteria for CFS. Ninety-five patients were randomized to pragmatic rehabilitation and 100 to general practitioner (GP) treatment as usual. The outcome was the Chalder fatigue scale score (0123 scoring) at end of treatment (20 weeks) and 1-year follow up (70 weeks). First, the effect of treatment on potential mediators was assessed. Then fatigue was regressed on significant mediators, treatment allocation, and baseline measures of fatigue and significant mediators.

RESULTS: Reduction in limiting activities at 20 weeks mediated the positive effect of pragmatic rehabilitation on fatigue at 70 weeks (mediated effect size = -2.64, SE = 0.81, p = .001, proportion of effect mediated = 82.0%). Reduction in catastrophizing at 20 weeks mediated the positive effect of pragmatic rehabilitation on fatigue at 70 weeks (mediated effect size = -1.39, SE = 0.61, p = .023, proportion of effect mediated = 43.2%). Reductions in 70-week measures of fear avoidance, embarrassment avoidance, limiting activities, and all-or-nothing behavior all mediated improvement in fatigue at 70 weeks, although the causal direction of these cross-sectional effects cannot be determined. There were no between-group differences on measures of exercise capacity (a timed step test).

CONCLUSIONS: Improvements in fatigue following pragmatic rehabilitation are related to changes in behavioral responses to and beliefs about fatigue.

 

Source: Wearden AJ, Emsley R. Mediators of the effects on fatigue of pragmatic rehabilitation for chronic fatigue syndrome. J Consult Clin Psychol. 2013 Oct;81(5):831-8. doi: 10.1037/a0033561. Epub 2013 Jun 24. https://www.ncbi.nlm.nih.gov/pubmed/23796316

 

Use of an online survey to explore positive and negative outcomes of rehabilitation for people with CFS/ME

Abstract:

PURPOSE:First, to explore the experiences of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) of rehabilitation therapies so as to build an understanding of reasons for the discrepancy between the notably mixed experiences regarding effectiveness reported in patient surveys and the RCT evidence about the efficacy of Graded Exercise Therapy (GET). GET is a form of structured and supervised activity management that aims for gradual but progressive increases in physical activity. Second, to review patient experiences of two related rehabilitation approaches, Exercise on Prescription (EoP) and Graded Activity Therapy (GAT).

METHOD: An online survey conducted by the charity Action for ME generated qualitative data about 76 patient experiences of rehabilitation undertaken during or after 2008, examined using thematic analysis.

RESULTS: Both positive and negative experiences of rehabilitation were reported. Positive themes included supportive communication, the benefits of a routine linked with baseline setting and pacing, the value of goal setting, and increasing confidence associated with exercise. Negative themes included poor communication, feeling pushed to exercise beyond a sustainable level, having no setback plan, and patients feeling blamed for rehabilitation not working.

CONCLUSIONS: The negative themes may help explain the negative outcomes from rehabilitation reported by previous patient surveys. The negative themes indicate rehabilitation processes which contradict the NICE (National Institute for Health and Clinical Excellence) Guideline advice regarding GET, indicating that some clinical encounters were not implementing these. These findings suggest areas for improving therapist training, and for developing quality criteria for rehabilitation in CFS/ME.

Implications for Rehabilitation: The insensitive delivery of rehabilitation support for people with CFS/ME can explain negative outcomes reported in patient surveys. Therapist-patient collaboration, establishing a sustainable baseline and agreeing a setback plan are all examples of higher quality rehabilitation indicated by this research. Greater awareness of the positive and negative experiences of rehabilitation therapies should enable avoidance of the potential pitfalls identified in this research.

Positive experiences of rehabilitation therapies include supportive communication with a therapist, treatment which included routines and goals, and value attached to baselines and controlled pacing. By contrast, factors leading to negative experiences include poor communication and support, conflict in beliefs about CFS/ME and rehabilitation, pressure to comply with treatment, worsening of symptoms, baselines experienced as unsustainable, and feeling blamed for rehabilitation not working.

Comment in:

 

Source: Gladwell PW, Pheby D, Rodriguez T, Poland F. Use of an online survey to explore positive and negative outcomes of rehabilitation for people with CFS/ME. Disabil Rehabil. 2014;36(5):387-94. doi: 10.3109/09638288.2013.797508. Epub 2013 Jun 4. https://www.ncbi.nlm.nih.gov/pubmed/23735013

 

Depressive symptoms and pragmatic rehabilitation for chronic fatigue syndrome

Abstract:

BACKGROUND: Previous research has suggested that depressed mood may predict outcome and moderate response to treatment in chronic fatigue syndrome, although findings have differed between studies.

AIMS: To examine potential moderators of response to pragmatic rehabilitation v. general practitioner treatment as usual in a recent randomised trial for patients with chronic fatigue syndrome in primary care (IRCTN74156610).

METHOD: Simple regressions, with weighting adjustments to allow for missing data, were calculated. Demographic, medical and psychological variables, and treatment arm, were entered separately and as an interaction term. The outcome variable in each case was change in Chalder Fatigue Scale scores, from baseline to 1-year follow-up, our primary outcome point.

RESULTS: Longer illness durations predicted poorer outcome across the two treatment arms. For patients allocated to pragmatic rehabilitation compared with those allocated to treatment as usual, higher levels of depressive symptoms at baseline were associated with smaller improvements in fatigue (P = 0.022).

CONCLUSIONS: For patients in primary care with higher levels of depressive symptoms, either more intensive or longer pragmatic rehabilitation, or cognitive-behavioural therapy, may be required in order to show a significant improvement in fatigue.

 

Source: Wearden AJ, Dunn G, Dowrick C, Morriss RK. Depressive symptoms and pragmatic rehabilitation for chronic fatigue syndrome. Br J Psychiatry. 2012 Sep;201(3):227-32. doi: 10.1192/bjp.bp.111.107474. Epub 2012 Jul 26. http://bjp.rcpsych.org/content/201/3/227.long (Full article)

 

Cognitive behavioural therapy versus multidisciplinary rehabilitation treatment for patients with chronic fatigue syndrome: study protocol for a randomised controlled trial (FatiGo)

Abstract:

BACKGROUND: Patients with chronic fatigue syndrome experience extreme fatigue, which often leads to substantial limitations of occupational, educational, social and personal activities. Currently, there is no consensus regarding the treatment. Patients try many different therapies to overcome their fatigue. Although there is no consensus, cognitive behavioural therapy is seen as one of the most effective treatments. Little is known about multidisciplinary rehabilitation treatment, a combination of cognitive behavioural therapy with principles of mindfulness, gradual increase of activities, body awareness therapy and pacing. The difference in effectiveness and cost-effectiveness between multidisciplinary rehabilitation treatment and cognitive behavioural therapy is as yet unknown. The FatiGo (Fatigue-Go) trial aims to compare the effects of both treatment approaches in outpatient rehabilitation on fatigue severity and quality of life in patients with chronic fatigue syndrome.

METHODS: One hundred twenty patients who meet the criteria of chronic fatigue syndrome, fulfill the inclusion criteria and sign the informed consent form will be recruited. Both treatments take 6 months to complete. The outcome will be assessed at 6 and 12 months after the start of treatment. Two weeks after the start of treatment, expectancy and credibility will be measured, and patients will be asked to write down their personal goals and score their current performance on these goals on a visual analogue scale. At 6 and 14 weeks after the start of treatment, the primary outcome and three potential mediators-self-efficacy, causal attributions and present-centred attention-awareness-will be measured. Primary outcomes are fatigue severity and quality of life. Secondary outcomes are physical activity, psychological symptoms, self-efficacy, causal attributions, impact of disease on emotional and physical functioning, present-centred attention-awareness, life satisfaction, patient personal goals, self-rated improvement and economic costs. The primary analysis will be based on intention to treat, and longitudinal analysis of covariance will be used to compare treatments.

DISCUSSION: The results of the trial will provide information on the effects of cognitive behavioural therapy and multidisciplinary rehabilitation treatment at 6 and 12 months follow-up, mediators of the outcome, cost-effectiveness, cost-utility, and the influence of treatment expectancy and credibility on the effectiveness of both treatments in patients with chronic fatigue syndrome.

TRIAL REGISTRATION: Current Controlled Trials ISRCTN77567702.

 

Source: Vos-Vromans DC, Smeets RJ, Rijnders LJ, Gorrissen RR, Pont M, Köke AJ, Hitters MW, Evers SM, Knottnerus AJ. Cognitive behavioural therapy versus multidisciplinary rehabilitation treatment for patients with chronic fatigue syndrome: study protocol for a randomised controlled trial (FatiGo). Trials. 2012 May 30;13:71. doi: 10.1186/1745-6215-13-71. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3781576/ (Full article)

 

Rehabilitation of decreased motor performance in patients with chronic fatigue syndrome: should we treat low effort capacity or reduced effort tolerance?

Abstract:

AIM: The aetiology, pathophysiology, diagnostic delineation and treatment of chronic fatigue syndrome (CFS) remain a matter of debate. Here some aspects of the debate are elucidated, with a particular focus on the patients’ decreased motor performance.

HYPOTHESIS: The pathophysiological basis of decreased motor performance in CFS may, theoretically, involve three components: (1) a peripheral energetic deficit (impaired oxidative metabolism and/or physical deconditioning); (2) a central perceptual disturbance (higher effort sense or increased ‘interoception’); and (3) a fundamental failure of the neurobiological stress system, leading to an abnormal ‘sickness response’. It is proposed that the first two components may lead to low effort capacity, while the third component may lead to reduced effort tolerance. Although there is evidence for low effort capacity influencing symptoms and functional limitations in CFS, it is assumed that reduced effort tolerance might be the primary disturbance in CFS.

DIAGNOSTIC IMPLICATIONS: Distinguishing low effort capacity and reduced effort tolerance may contribute to a refinement of current diagnostic criteria of CFS and the identification of subgroups.

THERAPEUTIC IMPLICATIONS: The above-mentioned distinction may make it possible to formulate a rationale for an effective implementation and adequate outcome evaluation of rehabilitation strategies in CFS.

RESEARCH IMPLICATIONS: This new heuristic framework may inform future research aimed at disentangling the complex determination of impaired motor performance in CFS, as well as studies aimed at customizing treatment to different subtypes of patients.

 

Source: Van Houdenhove B, Verheyen L, Pardaens K, Luyten P, Van Wambeke P. Rehabilitation of decreased motor performance in patients with chronic fatigue syndrome: should we treat low effort capacity or reduced effort tolerance? Clin Rehabil. 2007 Dec;21(12):1121-42. https://www.ncbi.nlm.nih.gov/pubmed/18042608

 

Long-term outcomes of an integrative rehabilitation program on quality of life: a follow-up study

Abstract:

OBJECTIVE: To assess the long-term effects of an integrative rehabilitation program on the overall quality of life of individuals with chronic fatigue syndrome (CFS).

METHODS: This study utilized a within-subjects, repeated measures cohort design. Twenty-three subjects diagnosed with CFS attended eight sessions of an illness-management group followed by 7 months of goal-oriented, individualized counseling that occurred once weekly for 30 min per session. Quality of life was assessed at five time points (baseline, following the group phase, following the one-on-one phase, and 4 and 12 months following program completion).

RESULTS: A within-subjects repeated measures ANOVA revealed significant increases in overall quality of life for up to 1 year following program completion [F(4, 21)=23.5, P<.001].

CONCLUSIONS: Definitive conclusions about program efficacy are limited by design issues. However, findings suggest that the program may have led to improvement in quality of life for up to 1 year following program completion.

 

Source: Taylor RR, Thanawala SG, Shiraishi Y, Schoeny ME. Long-term outcomes of an integrative rehabilitation program on quality of life: a follow-up study. J Psychosom Res. 2006 Dec;61(6):835-9. https://www.ncbi.nlm.nih.gov/pubmed/17141674

 

Favourable results of a rehabilitation programme with cognitive behavioural therapy and graded physical activity in patients with the chronic-fatigue syndrome

Abstract:

OBJECTIVE: To determine whether a specific course of interdisciplinary rehabilitation might lead to clinically significant changes in fatigue, experienced disability and physical function in patients with the chronic-fatigue syndrome (CFS).

DESIGN: Prospective and uncontrolled.

METHOD: ‘Het Roessingh’, a rehabilitation centre in Enschede, the Netherlands, has developed an interdisciplinary clinical rehabilitation programme for patients with CFS in cooperation with the ‘Nijmeegs Kenniscentrum Chronische Vermoeidheid’ [Chronic-Fatigue Knowledge Centre] in Nijmegen, the Netherlands. In this programme, physical, mental and social activities are gradually increased on the basis of cognitive behavioural principles and graded activity. Of the 127 successive persons who enrolled for the therapy during the period from August 2000 to December 2004, 99 fulfilled the inclusion criteria; they had a median duration of symptoms of 6 years. The results of treatment were evaluated by a measurement with the ‘Checklist individuele spankracht’ [Checklist individual muscle tone] before and after treatment and the scores on the ‘Patiëntspecifieke beperkingen’ [Patient-specific disability] and the Short form-36. The measured data were complete in 74 patients.

RESULTS: Before rehabilitation, the levels of fatigue, disability and distress were high. After treatment, the studied population showed significant improvement in fatigue, experienced disability and physical function. The magnitude of the improvement was generally ‘average’. At the end of treatment, 70% of the patients were clinically less fatigued, 68% experienced less disability and 55% functioned better physically. In 34% the level of fatigue was normalised after treatment, but 9.5% of the patients was more fatigue.

CONCLUSION: The rehabilitation programme offered for CFS led to significant improvements in function and fatigue.

Comment in: [Treatment of patients with the chronic-fatigue syndrome]. [Ned Tijdschr Geneeskd. 2006]

 

Source: Torenbeek M, Mes CA, van Liere MJ, Schreurs KM, ter Meer R, Kortleven GC, Warmerdam CG. Favourable results of a rehabilitation programme with cognitive behavioural therapy and graded physical activity in patients with the chronic-fatigue syndrome. Ned Tijdschr Geneeskd. 2006 Sep 23;150(38):2088-94. [Article in Dutch] https://www.ncbi.nlm.nih.gov/pubmed/17036861