Tag: 2013

Lumbar puncture, chronic fatigue syndrome and idiopathic intracranial hypertension: a cross-sectional study

Abstract:

OBJECTIVE: Unsuspected idiopathic intracranial hypertension (IIH) is found in a significant minority of patients attending clinics with named headache syndromes, if it is specifically sought out. Chronic fatigue syndrome is frequently associated with headache. Could the same be true of chronic fatigue? Moreover, there are striking similarities between the two conditions. Could they be related? Attempting to answer these questions, we describe the results of a change in clinical practice aimed at capturing patients with chronic fatigue who might have IIH.

DESIGN: Cross-sectional.

SETTING: Hospital outpatient and radiology departments.

PARTICIPANTS: Patients attending a specialist clinic with chronic fatigue syndrome and headache who had lumbar puncture to exclude raised intracranial pressure.

MAIN OUTCOME MEASURES: Intracranial pressure measured at lumbar puncture and the effect on headache of cerebrospinal fluid drainage.

RESULTS: Mean cerebrospinal fluid pressure was 19 cm H2O (range 12-41 cm H2O). Four patients fulfilled the criteria for IIH. Thirteen others did not have pressures high enough to diagnose IIH but still reported an improvement in headache after drainage of cerebrospinal fluid. Some patients also volunteered an improvement in other symptoms, including fatigue. No patient had any clinical signs of raised intracranial pressure.

CONCLUSIONS: An unknown, but possibly substantial, minority of patients with chronic fatigue syndrome may actually have IIH. An unknown, but much larger, proportion of patients with chronic fatigue syndrome do not have IIH by current criteria but respond to lumbar puncture in the same way as patients who do. This suggests that the two conditions may be related.

 

Source: Higgins N, Pickard J, Lever A. Lumbar puncture, chronic fatigue syndrome and idiopathic intracranial hypertension: a cross-sectional study. JRSM Short Rep. 2013 Nov 21;4(12):2042533313507920. doi: 10.1177/2042533313507920. eCollection 2013. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3899735/ (Full article)

 

Rebuttal to Ickmans et al. association between cognitive performance, physical fitness, and physical activity level in women with chronic fatigue syndrome

Dear Editor:

In a study recently published in Journal of Rehabilitation Research and Development, Ickmans et al. [1] found a substantially deteriorated physical exercise capacity in myalgic encephalopathy/chronic fatigue syndrome (ME/CFS), as established by a cardiopulmonary exercise test (peak oxygen uptake [VO2max]: 19.1 ± 4.6 mL/min/kg, peak heart rate: 145.1 ± 22.4 beats per minute [bpm], peak workload: 114.2 ± 31.3 W, compared with 27.2 ± 5.6 mL/min/ kg, 170.0 ± 36.2 bpm, and 114.2 ± 31.3 W, respectively, in sedentary controls). Ickmans et al. Also observed various cognitive deficits in ME/CFS, e.g., prolonged choice and simple reaction times in various Stroop subtests and the psychomotor vigilance task test (PVT), more errors of omission in the PVT, and worse letter recall scores on the operation span task test, indicative for working memory impairment and reduced psychomotor speed.

You can read the rest of this letter here:  http://www.rehab.research.va.gov/jour/2013/509/pdf/pagevii.pdf 

Comment on: Association between cognitive performance, physical fitness, and physical activity level in women with chronic fatigue syndrome. [J Rehabil Res Dev. 2013]

 

Source: Twisk F. Rebuttal to Ickmans et al. association between cognitive performance, physical fitness, and physical activity level in women with chronic fatigue syndrome. J Rehabil Res Dev. 2013;50(9):vii-viii. http://www.rehab.research.va.gov/jour/2013/509/pdf/pagevii.pdf (Full article)

 

The effects of exercise on dynamic sleep morphology in healthy controls and patients with chronic fatigue syndrome

Abstract:

Effects of exercise on dynamic aspects of sleep have not been studied. We hypothesized exercise altered dynamic sleep morphology differently for healthy controls relative to chronic fatigue syndrome (CFS) patients. Sixteen controls (38 ± 9 years) and 17 CFS patients (41 ± 8 years) underwent polysomnography on baseline nights and nights after maximal exercise testing. We calculated transition probabilities and rates (as a measure of relative and temporal transition frequency, respectively) between sleep stages and cumulative duration distributions (as a measure of continuity) of each sleep stage and sleep as a whole.

After exercise, controls showed a significantly greater probability of transition from N1 to N2 and a lower rate of transition from N1 to wake than at baseline; CFS showed a significantly greater probability of transition from N2 to N3 and a lower rate of transition from N2 to N1. These findings suggest improved quality of sleep after exercise. After exercise, controls had improved sleep continuity, whereas CFS had less continuous N1 and more continuous rapid eye movement (REM) sleep. However, CFS had a significantly greater probability and rate of transition from REM to wake than controls. Probability of transition from REM to wake correlated significantly with increases in subjective fatigue, pain, and sleepiness overnight in CFS – suggesting these transitions may relate to patient complaints of unrefreshing sleep.

Thus, exercise promoted transitions to deeper sleep stages and inhibited transitions to lighter sleep stages for controls and CFS, but CFS also reported increased fatigue and continued to have REM sleep disruption. This dissociation suggests possible mechanistic pathways for the underlying pathology of CFS.

 

Source: Kishi A, Togo F, Cook DB, Klapholz M, Yamamoto Y, Rapoport DM, Natelson BH. The effects of exercise on dynamic sleep morphology in healthy controls and patients with chronic fatigue syndrome. Physiol Rep. 2013 Nov;1(6):e00152. doi: 10.1002/phy2.152. Epub 2013 Nov 13. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3871467/ (Full article)

 

Comparing specialist medical care with specialist medical care plus the Lightning Process for chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME): study protocol for a randomised controlled trial (SMILE Trial)

Abstract:

BACKGROUND: Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is a relatively common and potentially serious condition with a limited evidence base for treatment. Specialist treatment for paediatric CFS/ME uses interventions recommended by National Institute for Health and Clinical Excellence (NICE) including cognitive behavioural therapy, graded exercise therapy and activity management. The Lightning Process (LP) is a trademarked intervention derived from osteopathy, life-coaching and neuro-linguistic programming, delivered over three consecutive days as group sessions. Although over 250 children with CFS/ME attend LP courses each year, there are no reported studies on the effectiveness or cost-effectiveness.

METHODS: This pragmatic randomised controlled trial is set within a specialist paediatric CFS/ME service in the south west of England. Children and young people with CFS/ME (n = 80 to 112), aged 12 to 18 years old will be randomised to specialist medical care (SMC) or SMC plus the LP. The primary outcome will be physical function (SF-36 physical function short form) and fatigue (Chalder Fatigue Scale).

DISCUSSION: This study will tell us whether adding the LP to SMC is effective and cost-effective compared to SMC alone. This study will also provide detailed information on the implementation of the LP and SMC.

TRIAL REGISTRATION: Current Controlled Trials ISRCTN81456207 (31 July 2012).

 

Source: Crawley E, Mills N, Hollingworth W, Deans Z, Sterne JA, Donovan JL, Beasant L, Montgomery A. Comparing specialist medical care with specialist medical care plus the Lightning Process for chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME): study protocol for a randomised controlled trial (SMILE Trial). Trials. 2013 Dec 26;14:444. doi: 10.1186/1745-6215-14-444. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3879423/ (Full article)

 

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

 

Cognitive functioning in people with chronic fatigue syndrome: a comparison between subjective and objective measures

Abstract:

OBJECTIVE: The purpose of this study was to examine the relationship between subjective and objective assessments of memory and attention in people with chronic fatigue syndrome (CFS), using tests that have previously detected deficits in CFS samples and measures of potential confounds.

METHOD: Fifty people with CFS and 50 healthy controls were compared on subjective (memory and attention symptom severity, Cognitive Failures Questionnaire, Everyday Attention Questionnaires) and objective (California Verbal Learning Test, Rey-Osterreith Complex Figure Test, Paced Auditory Serial Addition Test, Stroop task) measures of memory and attention. Fatigue, sleep, depression, and anxiety were also assessed.

RESULTS: The CFS group reported experiencing more cognitive problems than the controls, but the two groups did not differ on the cognitive tests. Scores on the subjective and objective measures were not correlated in either group. Depression was positively correlated with increased severity of cognitive problems in both the CFS and control groups.

CONCLUSIONS: There is little evidence for a relationship between subjective and objective measures of cognitive functioning for both people with CFS and healthy controls, which suggests that they may be capturing different constructs. Problems with memory and attention in everyday life are a significant part of CFS. Depression appears to be related to subjective problems but does not fully explain them.

 

Source: Cockshell SJ, Mathias JL. Cognitive functioning in people with chronic fatigue syndrome: a comparison between subjective and objective measures. Neuropsychology. 2014 May;28(3):394-405. doi: 10.1037/neu0000025. Epub 2013 Dec 23. https://www.ncbi.nlm.nih.gov/pubmed/24364389

 

Etiology of sicca syndrome in a consecutive series of 199 patients with chronic fatigue syndrome

Dear Sir,

Chronic fatigue syndrome (CFS) is a heterogeneous and multisystemic disorder of unknown pathogenesis and etiology. It is characterized by prolonged generalized and abnormal fatigue post-exercise (98%), recurrent headache (90%) and problems of concentration and memory (85%) that have lasted for at least 6 months. It is accompanied by such other symptoms as tender lymph nodes (80%), musculoskeletal pain (75%) and psychiatric problems (65%).1,2 The prevalence of CFS is estimated to be between 0.5 and 2.5%, predominantly in women (4:1).1,2 Many patients with CFS also complain of sicca symptoms in up to 30–87%, and are more likely to have thyroid disorder and sleep disruption;2,3 that may suggest an underlying role of the immune system in these patients. Primary Sjögren’ syndrome (PSS) is a systemic autoimmune disease, that presents chronic exocrine glands hypofunction leading to xerostomia and/or xerophthalmia, and extraglandular involvement, of which autoimmune hypothyroidism (AIHT) is the most common autoimmune disease developed4. Patients with PSS, also experience CFS-like musculoskeletal and neurocognitive symptoms more than 50%, and the two disorders share some similar immunologic defects.4 The purpose of this study was to determine the causality of sicca symptoms in 199 consecutive patients diagnosed as having CFS, and the possible association with PSS, although few studies that have examined this association (between 2010 and 2012 in our chronic fatigue unit of Joan XXIII University Hospital) according to the Fukuda’ criteria of 1994.

You can read the rest of this article here: http://www.reumatologiaclinica.org/en/etiology-sicca-syndrome-in-consecutive/articulo/S2173574314001075/

 

Source: Qanneta R, Fontova R, Pàmies A. Etiology of sicca syndrome in a consecutive series of 199 patients with chronic fatigue syndrome. Reumatol Clin. 2014 Jul-Aug;10(4):269-70. doi: 10.1016/j.reuma.2013.11.002. Epub 2013 Dec 17. http://www.reumatologiaclinica.org/en/etiology-sicca-syndrome-in-consecutive/articulo/S2173574314001075/ (Full article)

 

‘Sometimes it feels as if the world goes on without me’: adolescents’ experiences of living with chronic fatigue syndrome

Abstract:

AIMS AND OBJECTIVES: To explore the experience of being an adolescent with chronic fatigue syndrome.

BACKGROUND: Despite ample research, chronic fatigue syndrome is still poorly understood, and there are still controversies related to the illness. Adolescents with chronic fatigue syndrome are often unable to attend school and lose social relations with friends. The challenges they face will affect their quality of life.

DESIGN: A qualitative, phenomenological hermeneutical design.

METHOD: Six boys and twelve girls, aged 12-18, were interviewed, emphasising their own experiences living with chronic fatigue syndrome. Analyses were performed using a phenomenological hermeneutical method.

RESULTS: The core theme, ‘Sometimes it feels as if the world goes on without me’, encompasses the feelings an adolescent living with chronic fatigue syndrome might have about life. The core theme was supported by four subthemes: ‘On the side of life–locked in and shut out’; ‘the body, the illness and me’; ‘if the illness is not visible to others, does it exist?’; and ‘handling life while hoping for a better future’. The subthemes reflect the experience of social isolation, their own and others’ understanding of the illness and hope for the future.

CONCLUSIONS: Not being able to be with friends, or attend school, made the adolescents feel different and forgotten. They felt alienated in their own bodies and were struggling to be visible to themselves and to their surroundings. Spending less time with friends and more time with their parents constituted a threat to independence and development. Yet they managed to envision a better future despite all the difficulties.

RELEVANCE FOR CLINICAL PRACTICE: To provide effective support and constructive relations to adolescents with chronic fatigue syndrome, all health professions involved need insight from the persons who are themselves ill. Health centres could function as resource centres for patients and healthcare professionals.

© 2013 John Wiley & Sons Ltd.

 

Source: Winger A, Ekstedt M, Wyller VB, Helseth S. ‘Sometimes it feels as if the world goes on without me’: adolescents’ experiences of living with chronic fatigue syndrome. J Clin Nurs. 2014 Sep;23(17-18):2649-57. doi: 10.1111/jocn.12522. Epub 2013 Dec 20. https://www.ncbi.nlm.nih.gov/pubmed/24354631

 

Chronic fatigue syndrome: a patient’s perspective

In 1999 I contracted a throat infection that receded after many weeks, but I was still unbelievably exhausted with the most intense flu-like malaise. Two years later I was diagnosed with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and joined the 240 000-plus people in the UK with this illness. I assumed that a diagnosis would lead to effective treatment, but I was in for a shock.

Initially my GP suggested I see a psychotherapist. It seemed a strange recommendation, but I trusted his judgement and decided to see if this would help. Unfortunately it had no impact at all on the illness. My GP then referred me to an endocrinologist who boldly announced that, as the test results were all normal, everything was fine and offered to prescribe antidepressants. I was deeply frustrated by the suggestion that clear test panels meant I should be treated as a depressed patient. I was not inclined to agree that antidepressants were the best treatment when my experience of the symptoms was closer to that of an infection than a mood disorder. In fact, I have been told a number of times that I’m simply depressed, or that I am de-conditioned and just need to exercise. I wouldn’t mind if either diagnosis were true, as there are effective treatments available, but they are inadequate explanations.

CFS/ME waxes and wanes but also causes post-exertional malaise: when patients go beyond their usual (restricted) activity level they suffer a worsening of symptoms which can be severe. Patients often refer to this as a crash. For me this can mean being bedridden for weeks with muscle weakness, dizziness, loss of appetite, and indescribable physical and mental exhaustion. It’s worth noting that my GP has only ever seen me when the symptoms are at the lesser end of the scale. During a crash I am too ill to leave my bed, let alone travel to the surgery.

When I first got sick, CFS/ME seemed to be largely treated as a mysterious psychological condition, with doctors encouraged to limit the number of tests done, and with patients left to self-manage. Since then things have improved a little in that there are fatigue clinics in some areas, but the overall treatment situation remains poor, with most patients receiving little or no effective treatment through the NHS.

The PACE trial is the largest study performed into CFS/ME treatments, primarily cognitive behavioural therapy (CBT) and graded exercise therapy (GET). I think the £5 million cost would have been better spent on immunological studies, exercise physiology testing, and understanding the disease mechanisms. A recently published PACE trial paper reported on ‘recovery’ rates.1 However, the letters published in response to the paper show that the study’s post-hoc definition of ‘recovery’ was seriously flawed, and so much looser than the recovery criteria outlined in the trial’s protocol that the ‘recovery’ outcomes bear no relation to what an average person, or clinician, would define as recovery of health. PACE was an un-blinded study and the primary outcomes were all subjective self-report measures at risk of response bias. Changes from the trial protocol2 also meant that it was easier for patients to be classed as improved, yet even then the addition of CBT and GET to specialist medical care led to only an extra 11–15% of patients reporting improvement.3 This simply underscores the need for more research across all areas to find effective treatments.

CFS/ME presents difficulties for both patients and doctors, reinforcing the need for them to work together in partnership. A recent BMJ editorial4 entitled Let the Patient Revolution Begin could not have said it better:

‘ … health care won’t get better until patients play a leading role in fixing it.’

You can read the full comment here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3839372/

 

Source: Cornes O. Chronic fatigue syndrome: a patient’s perspective. Br J Gen Pract. 2013 Dec;63(617):648. doi: 10.3399/bjgp13X675458. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3839372/ (Full article)

 

Role of adaptive and innate immune cells in chronic fatigue syndrome/myalgic encephalomyelitis

Abstract:

Perturbations in immune processes are a hallmark of a number of autoimmune and inflammatory disorders. Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is an inflammatory disorder with possible autoimmune correlates, characterized by reduced NK cell activity, elevations in regulatory T cells (Tregs) and dysregulation in cytokine levels. The purpose of this article is to examine innate and adaptive immune cell phenotypes and functional characteristics that have not been previously examined in CFS/ME patients.

Thirty patients with CFS/ME and 25 non-fatigued controls were recruited for this study. Whole blood samples were collected from all participants for the assessment of cell phenotypes, functional properties, receptors, adhesion molecules, antigens and intracellular proteins using flow cytometric protocols. The cells investigated included NK cells, dendritic cells, neutrophils, B cells, T cells, γδT cells and Tregs.

Significant changes were observed in B-cell subsets, Tregs, CD4(+)CD73(+)CD39(+) T cells, cytotoxic activity, granzyme B, neutrophil antigens, TNF-α and IFN-γ in the CFS/ME patients in comparison with the non-fatigued controls. Alterations in B cells, Tregs, NK cells and neutrophils suggest significant impairments in immune regulation in CFS/ME and these may have similarities to a number of autoimmune disorders.

 

Source: Brenu EW, Huth TK, Hardcastle SL, Fuller K, Kaur M, Johnston S, Ramos SB, Staines DR, Marshall-Gradisnik SM. Role of adaptive and innate immune cells in chronic fatigue syndrome/myalgic encephalomyelitis. Int Immunol. 2014 Apr;26(4):233-42. doi: 10.1093/intimm/dxt068. Epub 2013 Dec 16. http://intimm.oxfordjournals.org/content/26/4/233.long (Full article)