From the Journal of Psychophysiology, 29 April 2013.
Heart Rate Variability and Fatigue in Patients With Chronic Fatigue Syndrome After a Comprehensive Cognitive Behavior Group Therapy Program
Anita L. Hansen(1), Gerd Kvale(2), Bjarte Stubhaug(3), Julian F. Thayer(4)
1. University of Bergen, Department of Psychosocial Science and Center for Research and Education in Forensic Psychiatry, Haukeland University Hospital, Norway
2. Department of Clinical Psychology, University of Bergen and Haukeland University Hospital, OCD-unit/Frihamnsenteret Clinic, Skånevik, Norway
3. Section of Mental Health Research, Helse Fonna HF, Frihamnsenteret Clinic, Skånevik, Institute of Clinical Medicine, University of Bergen, Norway
4. Department of Psychology, The Ohio State University, Columbus, OH, USA
Abstract
In psychotherapy research, there is a general lack of studies that include objective measurements that provide information about the basic underlying mechanisms involved in behavioral and psychiatric conditions. In this pilot study, we investigated cardiovascular activity and self-reported fatigue in patients with Chronic Fatigue Syndrome (CFS) compared to normal healthy controls who served as a reference group.
Furthermore, based on a one-group pre-post design, we investigated whether exposure to a Comprehensive Cognitive Behavior Therapy (CCBT) program resulted in any changes in cardiovascular activity and self-reported fatigue in CFS patients. Overall, 19 female CFS patients and 21 normal healthy controls were included in the study.
Cardiovascular activity measurements were heart rate (HR), low frequency/high frequency (LF/HF ratio), and heart rate variability (the root mean of the squared successive differences; rMSSD). Fatigue was measured using the Chalder Fatigue Questionnaire.
Analyses of the results indicated that, compared to normal healthy controls, CFS patients were characterized by higher HR and self-reported fatigue prior to exposure to the CCBT. Interestingly, CFS patients showed a significant decrease in LF/HF ratio indicating a shift in sympathovagal balance toward greater vagal activation, and levels of experienced fatigue subsequent to CCBT.
From the Journal of Adolescent Health, 2 May 2013.
http://www.jahonline.org/article/S1054-139X(13)00145-6/abstract
Interventions in Pediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Systematic Review
Sarah J Knight, Adam Scheinberg, Adrienne R Harvey
Murdoch Childrens Research Institute, Melbourne, Victoria, Australia
Abstract
PURPOSE
A range of interventions have been used for the management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in children and adolescents. Currently, debate exists as to the effectiveness of these different management strategies. The objective of this review was to synthesize and critically appraise the literature on interventions for pediatric CFS/ME.
METHOD
CINAHL, PsycINFO and Medline databases were searched to retrieve relevant studies of intervention outcomes in children and/or adolescents diagnosed with CFS/ME. Two reviewers independently selected articles and appraised the quality on the basis of predefined criteria.
RESULTS
A total of 24 articles based on 21 studies met the inclusion criteria. Methodological design and quality were variable. The majority assessed behavioral interventions (10 multidisciplinary rehabilitation; 9 psychological interventions; 1 exercise intervention; 1 immunological intervention). There was marked heterogeneity in participant and intervention characteristics, and outcome measures used across studies. The strongest evidence was for Cognitive Behavioral Therapy (CBT)-based interventions, with weaker evidence for multidisciplinary rehabilitation. Limited information exists on the maintenance of intervention effects.
CONCLUSIONS
Evidence for the effectiveness of interventions for children and adolescents with CFS/ME is still emerging. Methodological inadequacies and inconsistent approaches limit interpretation of findings. There is some evidence that children and adolescents with CFS/ME benefit from particular interventions; however, there remain gaps in the current evidence base.
From ‘Frontiers in Integrative Physiology', 30 April 2013.
Cognitive Impairments Associated with CFS and POTS
Lindzi Shanks, Leonard A. Jason, Meredyth Evans, and Abigail Brown
DePaul University, Center for Community Research, Chicago, IL
Abstract
Chronic fatigue syndrome (CFS) is characterized by fatigue, sleep dysfunction, and cognitive deficits (Fukuda et al., 1994). Research surrounding cognitive functioning among patients with CFS has found difficulty with memory, attention, and information processing.
A similar disorder, postural tachycardia syndrome (POTS), is characterized by increased heart rate, fatigue, and mental cloudiness (Raj et al., 2009). Potential implications of cognitive deficits for patients with CFS and/or POTS are discussed, including difficulties with school and/or employment.
A few biological theories (i.e., kindling, impairments in the central nervous system, and difficulty with blood flow) have emerged as potential explanations for the cognitive deficits reported in both CFS and POTS
Future research should continue to examine possible explanations for cognitive impairments in CFS and POTS, and ultimately use this information to try and reduce cognitive impairments for these patients.
From Behaviour Research and Therapy, 9 April 2013.
The role of the therapeutic relationship in cognitive behaviour therapy for chronic fatigue syndrome.
Heins MJ, Knoop H, Bleijenberg G.
Expert Centre for Chronic Fatigue, Radboud University Nijmegen Medical Centre, 4628, PO Box 9101, 6500 HB Nijmegen, The Netherlands. Electronic address: m.heins@nkcv.umcn.nl.
Abstract
Cognitive behaviour therapy (CBT) for chronic fatigue syndrome (CFS) can reduce fatigue and impairment.
Recently, it was found that changes in fatigue-perpetuating factors, i.e. focusing on symptoms, control over fatigue, perceived activity and physical functioning, are associated with and explain up to half of the variance in fatigue during CBT for CFS. The therapy relationship, e.g. outcome expectations and working alliance, may also contribute to treatment outcome.
We aimed to examine the role of the therapy relationship in CBT and determine whether it exerts its effect independently of changes in fatigue-perpetuating factors. We used a cohort of 217 CFS in which the pattern of change in fatigue-perpetuating factors was examined previously.
Fatigue, therapy relationship andfatigue-perpetuating factors were measured at the start of therapy, three times during CBT and at the end of therapy. Baseline outcome expectations and agreement about the content of therapy predicted post therapy fatigue.
A large part of the variance in post-treatment fatigue (25%) was jointly explained by outcome expectations, working alliance and changes in fatigue-perpetuating factors. From this, we conclude that positive outcome expectations and task agreement seem to facilitate changes in fatigue-perpetuating factors during CBT for CFS.
It is therefore important to establish a positive therapy relationshipearly in therapy.
From Clinical Rheumatology, 3 May 2013 [Epub ahead of print].
Fear of movement and avoidance behaviour toward physical activity in chronic-fatigue syndrome and fibromyalgia: state of the art and implications for clinical practice.
Nijs J, Roussel N, Van Oosterwijck J, De Kooning M, Ickmans K, Struyf F, Meeus M, Lundberg M.
Pain in Motion research group, Department of Human Physiology and Rehabilitation Sciences, Faculty of Physical Education and
Physiotherapy, Vrije Universiteit Brussel, Building L-Mfys, Pleinlaan 2, 1050, Brussels, Belgium, Jo.Nijs@vub.ac.be.
Abstract
Severe exacerbation of symptoms following physical activity is characteristic for chronic-fatigue syndrome (CFS) and fibromyalgia (FM). These exacerbations make it understandable for people with CFS and FM to develop fear of performing body movement or physical activity and consequently avoidance behaviour toward physical activity.
The aims of this article were to review what measures are available for measuring fear of movement and avoidance behaviour, the prevalence fear of movement and avoidance behaviour toward physical activity and the therapeutic options with fear of movement and avoidance behaviour toward physical activity in patients with CFS and FM.
The review revealed that fear of movement and avoidance behaviour toward physical activity is highly prevalent in both the CFS and FM population, and it is related to various clinical characteristics of CFS and FM, including symptom severity and self-reported quality of life and disability.
It appears to be crucial for treatment (success) to identify CFS and FM patients displaying fear of movement and avoidance behaviour toward physical activity. Individually tailored cognitive behavioural therapy plus exercise training, depending on the patient's classification as avoiding or persisting, appears to be the most promising strategy for treating fear of movement and avoidance behaviour toward physical activity in patients with CFS and FM.
Editorial in The American Journal of Psychiatry, 1 May 2013.
Gijs Bleijenberg, Ph.D.; Hans Knoop, Ph.D.
The Expert Centre for Chronic Fatigue, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands. Address correspondence to Dr. Bleijenberg (g.bleijenberg@nkcv.umcn.nl)
Article
The study by Lamers et al. in this issue (1) is important in several respects. Fatigue in adolescents was investigated in a large representative sample from the general population by structured interviews. T
he study demonstrated that persistent fatigue without anxiety or depression occurred in 1.4% of the adolescents. This prevalence rate is surprisingly high, and in about 60% of this group the fatigue was associated with substantial disability. Despite these disabilities, the adolescents with persistent fatigue without anxiety or depression generally did not seek help from the health care system. This reflects perhaps the assumption of both adolescents and health care professionals that fatigue is a transient state that will resolve spontaneously.
But is that true? Or should more attention be paid to this debilitating symptom? Fatigue indeed occurs frequently in adolescents. It is not unusual that youngsters experiment with extreme behavior, thereby exhausting themselves. Usually the fatigue resolves when the adolescent changes his or her behavior.
Fatigue becomes a problem if it persists and leads to disability, such as school absence, or if the adolescent feels continuously unable to be physically active (e.g., participate in sports) and socially involved (e.g., take part in festivities, go out). Then fatigue threatens the adolescent’s social, emotional, and intellectual development. In those instances, fatigue deserves attention from the health care system.
Fatigue can best be considered as a continuum: from slight, temporary fatigue without disability to severe, persisting fatigue leading to extreme disability. At the utmost of this continuum is chronic fatigue syndrome. Chronic fatigue syndrome is characterized by a clinically evaluated, somatically unexplained persistent or relapsing disabling fatigue that lasts at least 6 months and is accompanied by at least four of a possible eight symptoms (memory or concentration problems, sore throat, tender lymph nodes, muscle pain, multijoint pain, headache, unrefreshing sleep, postexertional malaise) (2). Chronic fatigue syndrome is found in adolescents as well as adults. Its primary adverse impact in adolescents is extreme disability associated with considerable school absence (3).
To consider the prevalence of fatigue, it is important to know where on the described continuum it was measured. Lamers et al. (1) asked for persistent fatigue of 3 months’ duration and found a prevalence of 3.0%. More than half of these youngsters also had anxiety or depression; the others had only persistent fatigue. A recent epidemiological study using a questionnaire to assess fatigue showed a prevalence rate of 2.4% for disabling fatigue of 3 months’ duration, but at 6 months a much lower rate, 1.3%, was found (4). This suggests that the prevalence of persistent fatigue would probably be much lower if Lamers et al. had asked for fatigue of 6 months’ duration.
It is known that chronic fatigue syndrome in adolescents is less prevalent than in adults (5) and also less prevalent than persistent fatigue (3). Prevalence rates of adolescent chronic fatigue syndrome vary from 0.04% to 0.57% (5, 6).
The natural course of chronic fatigue syndrome in adolescents is much more favorable than the course in adults. In adults fewer than 10% of patients return to premorbid levels of functioning (7), whereas in adolescents the rate is about 50% (8). The natural course of persistent fatigue not meeting the Centers for Disease Control and Prevention criteria for chronic fatigue syndrome is still better (9).
In the study by Lamers et al., more than half of the adolescents with persistent fatigue alone had substantial disability. Unfortunately, the authors do not mention what exactly the disability in their youngsters means. It is not specified. Is it school absence as a consequence of fatigue? Or is it not being able to do sport or other leisure activities?
A useful way of looking at chronic unexplained fatigue, especially chronic fatigue syndrome, is to make distinctions among predisposing, precipitating, and perpetuating factors. The precipitating factors elicit the fatigue. These can be (somatic) factors such as infections or inflammations, but they can also be (psychological) stress factors. Family adversity appears to be a precipitating factor in adolescents (4). Predisposing factors are present before the fatigue starts, facilitating chronicity of the fatigue after the appearance of a fatigue-precipitating factor. A history of childhood maltreatment and adult psychopathology, but not childhood psychopathology, appear to be predisposing factors, enhancing the chance that a person will develop chronic fatigue syndrome as an adult (10). But these factors have never been specifically tested for adolescent chronic fatigue syndrome. So little is known about the predisposing factors in adolescents.
Precipitating factors can explain why fatigue arises but not why it persists when the precipitating factor is not active anymore. Perpetuating factors impede recovery. Psychological processes are involved in the perpetuation of symptoms in chronic fatigue syndrome. These processes involve fatigue-related cognitions and behavioral factors such as perceived problems with activity. A strong belief in a physical cause of the illness, a strong focus on bodily sensations, and a poor sense of control over symptoms (and other factors) contribute to maintenance of fatigue severity and functional impairment (11). In adolescents severe fatigue in the mother can be a perpetuating factor (12, 13).
Now that Lamers et al. have shown the prevalence of the different fatigue types, an important next step would be to determine the course of the fatigue. One would expect a more favorable course if there is less disability or less psychological comorbidity. Unfortunately, because of the cross-sectional character of the study we do not know.
If severe fatigue is associated with disability, it threatens the normal development of adolescents, and timely treatment can prevent developmental disruption. Cognitive-behavioral therapy (CBT) is an evidence-based treatment for adolescents with chronic fatigue syndrome (13, 14), and recently it has become available on the Internet, with the same cognitive-behavioral principles (15). CBT for adolescent chronic fatigue syndrome is directed at the perpetuating factors of fatigue. The parents are actively involved. First, the goal of return to full-time education is discussed. Next, the sleep-wake cycle is regulated by choosing fixed times for going to bed and getting up. Then patients learn to change their focus of attention from fatigue to activities or their social environment. Adolescents with a fluctuating activity pattern first learn to divide their activities more evenly, after which they incrementally increase physical activity. The passive patients start immediately with this program. The essence of the step-by-step program is the adolescents’ realization that they are able to enlarge their possibilities. Their sense of control over symptoms increases thereby. Later they also do the same with mental and social activities, if necessary. Then the plan for returning to school is discussed and also carried out step by step. During the last phase adolescents experiment with relaxing the principles of the treatment, such as the fixed bedtimes and the incremental approach. Only then can they consider themselves recovered from chronic fatigue syndrome and experience fatigue as a normal, daily phenomenon.
In a comparison of face-to-face CBT and a waiting list (14) and a comparison of Internet CBT and usual care (15), this treatment was effective; 60%–70% of the patients recovered. They were no longer severely fatigued, were attending school, and no longer were physically impaired.
From the Journal of Adolescent Health, 1 May 2013 [Epub ahead of print].
Interventions in Pediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Systematic Review.
Knight SJ, Scheinberg A, Harvey AR.
Murdoch Childrens Research Institute, Melbourne, Victoria, Australia;
The Victorian Paediatric Rehabilitation Service at Monash Children's, Melbourne, Victoria, Australia;
The University of Melbourne, Melbourne, Victoria, Australia.
Abstract
PURPOSE
A range of interventions have been used for the management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in children and adolescents. Currently, debate exists as to the effectiveness of these different management strategies. The objective of this review was to synthesize and critically appraise the literature on interventions for pediatric CFS/ME.
METHOD
CINAHL, PsycINFO and Medline databases were searched to retrieve relevant studies of intervention outcomes in children and/or adolescents diagnosed with CFS/ME. Two reviewers independently selected articles and appraised the quality on the basis of predefined criteria.
RESULTS
A total of 24 articles based on 21 studies met the inclusion criteria. Methodological design and quality were variable. The majority assessed behavioral interventions (10 multidisciplinary rehabilitation; 9 psychological interventions; 1 exercise intervention; 1 immunological intervention).
There was marked heterogeneity in participant and intervention characteristics, and outcome measures used across studies. The strongest evidence was for Cognitive Behavioral Therapy (CBT)-based interventions, with weaker evidence for multidisciplinary rehabilitation. Limited information exists on the maintenance of intervention effects.
CONCLUSIONS
Evidence for the effectiveness of interventions for children and adolescents with CFS/ME is still emerging. Methodological inadequacies and inconsistent approaches limit interpretation of findings. There is some evidence that children and adolescents with CFS/ME benefit from particular interventions; however, there remain gaps in the current evidence base.
Many of these psychiatry based studies do not define the severity of the ME of the people they are studying – nor do they adequately distinguish between everyday “fatigue” and the type of fatigue associated with ME – delayed reaction and muscle fatigue. This makes me wonder whether they are really studying people with ME – it’s not clear. I also see assumptions based on past psychiatric literature such as that old chestnut of “perpetuating factors”.
It’s depressing that given the recent well reported progress on biomedical causes for ME, researchers are still stating that CFS is “unexplained”. I came across an article in the BMJ from 1978 on the web – which is very clear that ME is a biomedical illness – this was before the psychiatric smokescreen was let loose. It’s time, surely, to do more on challenging these assumptions – maybe we need a little more evidence? Or have we allowed ourselves to forget what was known all along? See:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1604957/pdf/brmedj00128-0006b.pdf
The outcome in the top article is, I think, good? It shows that exercise has a measurable adverse effect in ME patients.
BUT, if I see one more American (or UK) psychiatric journal talking about “behavioral factors” such as “perceived problems with activity”, I really shall do something I regret.
As ME patients have reported many many times, exercise HURTS and exacerbates ALL ME symptoms, including brain inflammation symptoms, that is why we avoid it.
I’ve been reading this nonsense since I got ill 15 years ago, and it is STILL being peddled and regurgitated in psychiatric and behavioural journals, in spite of all scientific evidence, educational efforts of ME charities and patient reports to the contrary.
“Chronic fatigue syndrome is characterized by a clinically evaluated, somatically unexplained persistent or relapsing disabling fatigue that lasts at least 6 months and is accompanied by at least four of a possible eight symptoms (memory or concentration problems, sore throat, tender lymph nodes, muscle pain, multijoint pain, headache, unrefreshing sleep, postexertional malaise”
Now if I wasn’t certain before, here’s a good example of a mismatch in terminology between research and at least some patients, that I suspect hasn’t helped the way the disease has steadily slipped into a different identity.
When I was diagnosed with PVFS in 1990, recovered fully from that after a year and then fell ill again with the more serious ME in 1994, and when my Dad was diagnosed around 1984, the general rule of thumb (with my doctor at least – and I’m not claiming to be more than vaguely accurate in the non-essentials, because it was a while back and I can’t find the literature!) was that the one major determinative symptom was post-exertional malaise, with at least four out of the other neurological/immunological/muscle/joint symptoms mentioned making the difference between ME, and a more generalised Post-Viral Fatigue Syndrome which had a high chance of recovery.
What I remember about the discussions at the time, including in local/national ME groups, is that within the patients at least, but sometimes also the literature, the central symptom of post-exertional malaise was often referred to as post-exertional fatigue, and often simply as “fatigue”. We all knew what it meant, and there wasn’t any other sleepiness/lack of motivation present in the illness to get confused between.
Our language as a patient population shifted because fatigue isn’t a word that’s in common everyday English use, so it could be used – in an ME-specific context – to mean a different type of tiredness that was completely out of the realms of anything we ever felt during our previous, healthy experience. A different and distinct physical sensation that was beyond any existing word we could find, and of which “fatigue” was still only a best approximation. It also shifted because when “malaise” is used outside of scientific research, it’s usually got undertones of Depression and “Can’t Be Bothered” that were inaccurate and inappropriate for us.
But somewhere along the line (probably originating in the notorious 1988 creation of CFS as a research handle, which I at least, never heard a whisper of until 7-8 years after), researchers started to assume that tiredness/sleepiness were what we all meant by fatigue. …I’ve lost count of the number of times I’ve had to clarify that the reason I have to lie down during the day is because of muscle weakness and pain and not being able to stay upright any longer, rather than because I’m a) unmotivated, or b) in need of a snooze, and yet still I get lectured about the importance of not taking daytime naps!
And now they’re citing that tiredness as THE major symptom, with post-exertional malaise as an optional after-thought.
Someone has seriously got to do a language comparison between patients and researchers to join the dots again – what else are we miscommunicating?
Academics trotting out route of least resistance research abstracts to add to their already lightweight list of publications, legitimise their existence and not upset the status quo?
There’s a tendency for pwme to take intellectual laziness personally. Don’t. Lecture theatres across the world echo with buzz words, received opinions and very little real thought. Hence, Lucky’s hilarious speech in Beckett’s Waiting for Godot:
“Given the existence as uttered forth in the public works of Puncher and Wattman …”, “for reason’s unknown …”, ‘but time will tell …’
Amidst all this linguistic blather, weighty medical research stands out like a sore thumb. Of course, there is plenty of excellent scientific research which we all know and we won’t forget, despite our ‘cognitive problems’; and we thank the scientists for sticking with it regardless of all the spin.
Love it! Thanks, Medusa.
These abstracts from more lousy publications got me really down, but you’ve cheered me right up, Medusa.
Thanks!
I don’t have fatigue, I’ve never had fatigue.
Somebody turned the gravity up on me, making walking, very suddenly, a serious effort to wade through a lake of invisible treacle.
That same treacle got put in and around my neurons, instead of nice intra- and extra- cellular fluids and makes me have to call on far more regions of my brain to accomplish simple tasks – (or simply to refuse to do them in a crash of mental agony).