Reasons for poor experiences of rehabilitation therapies

Posted on 06/19/2013 by wames

Review 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.

Use of an online survey to explore positive and negative outcomes of rehabilitation for people with CFS/ME.  PW Gladwell, D Pheby, T Rodriguez, F Poland  Disability and Rehabilitation, 4 June 2013 [Epub ahead of print]

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Cognitive problems & pain not related in CFS

Posted on 06/18/2013 by wames

Research Abstract

In various chronic pain populations, decreased cognitive performance is known to be related to pain severity. Yet, this relationship has not been investigated in patients with chronic fatigue syndrome (CFS). This study investigated the relationship between cognitive performance and (1) pain severity, (2) level of fatigue, and (3) self-reported symptoms and health status in women with CFS. Examining the latter relationships is important for clinical practice, since people with CFS are often suspected to exaggerate their symptoms.

A sample of 29 female CFS patients and 17 healthy controls aged 18 to 45 years filled out three questionnaires (Medical Outcomes Study 36-Item Short-Form Health Survey, Checklist Individual Strength (CIS), and CFS Symptom List) and performed three performance-based cognitive tests (psychomotor vigilance task, Stroop task, and operation span task), respectively.

In both groups, pain severity was not associated with cognitive performance. In CFS patients, the level of fatigue measured with the CFS Symptom List, but not with the CIS, was significantly correlated with sustained attention. Self-reported mental health was negatively correlated with all investigated cognitive domains in the CFS group.

These results provide evidence for the clinical importance of objectively measured cognitive problems in female CFS patients. Furthermore, a state-like measure (CFS Symptom List) appears to be superior over a trait-like measure (CIS) in representing cognitive fatigue in people with CFS. Finally, the lack of a significant relationship between cognitive performance and self-reported pain severity suggests that pain in CFS might be unique.

Cognitive performance is of clinical importance, but is unrelated to pain severity in women with chronic fatigue syndrome. K Ickmans et al   Clin Rheumatol. 2013 Jun 5. [Epub ahead of print]

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Review of subgroups found in CFS

Posted on 06/18/2013 by wames

Review abstract

We have been able to reduce substantially patient pool heterogeneity by identifying phenotypic markers that allow the researcher to stratify chronic fatigue syndrome (CFS) patients into subgroups.

To date, we have shown that stratifying based on the presence or absence of comorbid psychiatric diagnosis leads to a group with evidence of neurological dysfunction across a number of spheres.

We have also found that stratifying based on the presence or absence of comorbid fibromyalgia leads to information that would not have been found on analyzing the entire, unstratified patient group.

Objective evidence of orthostatic intolerance (OI) may be another important variable for stratification and may define a group with episodic cerebral hypoxia leading to symptoms.

We hope that this review will encourage other researchers to collect data on discrete phenotypes in CFS to allow this work to continue more broadly. Finding subgroups of CFS suggests different underlying pathophysiological processes responsible for the symptoms seen. Understanding those processes is the first step toward developing discrete treatments for each.

Brain dysfunction as one cause of CFS symptoms including difficulty with attention and concentration   Benjamin H. Natelson  Front Physiol. 2013; 4: 109

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Impaired information processing speed found in CFS

Posted on 06/14/2013 by wames

Research abstract

Objective: To examine cognitive deficits in people with chronic fatigue syndrome (CFS) and their relationship to psychological status, CFS symptoms, and everyday functioning.

Method:  The current study compared the cognitive performance (reaction time, attention, memory, motor functioning, verbal abilities, and visuospatial abilities) of a sample with CFS (n = 50) with that of a sample of healthy controls (n = 50), all of whom had demonstrated high levels of effort and an intention to perform well, and examined the extent to which psychological status, CFS symptoms, and everyday functioning were related to cognitive performance.

Results:  The CFS group showed impaired information processing speed (reaction time), relative to the controls, but comparable performance on tests of attention, memory, motor functioning, verbal ability, and visuospatial ability. Moreover, information processing speed was not related to psychiatric status, depression, anxiety, the number or severity of CFS symptoms, fatigue, sleep quality, or everyday functioning.

Conclusion: A slowing in information processing speed appears to be the main cognitive deficit seen in persons with CFS whose performance on effort tests is not compromised. Importantly, this slowing does not appear to be the consequence of other CFS-related variables, such as depression and fatigue, or motor speed.

Cognitive deficits in chronic fatigue syndrome and their relationship to psychological status, symptomatology, and everyday functioning.  SJ Cockshell, JL Mathias   Neuropsychology March 2013

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T & NK cell screening is a possible biomarker for CFS

Posted on 06/14/2013 by wames

Research abstract

Background: Chronic Fatigue Syndrome (CFS) is a debilitating neuro-immune disorder of unknown etiology diagnosed by an array of clinical manifestations. Although several immunological abnormalities have been described in CFS, their heterogeneity has limited diagnostic applicability.

Methods: Immunological features of CFS were screened in 22 CFS diagnosed individuals fulfilling Fukuda criteria and 30 control healthy individuals. Peripheral blood T, B and NK cell function and phenotype were analyzed by flow cytometry in both groups.

Results: CFS diagnosed individuals showed similar absolute numbers of T, B and NK cells, with minor differences in the percentage of CD4+ and CD8+ T cells. B cells showed similar subset frequencies and proliferative responses between groups. Conversely, significant differences were observed in T cell subsets. CFS individuals showed increased levels of T regulatory cells (CD25+/FOXP3+) CD4 T cells, and lower proliferative responses in vitro and in vivo. Moreover, CD8 T cells from the CFS group showed significantly lower activation and frequency of effector memory cells. No clear signs of T-cell immunosenescence were observed. NK cells from CFS individuals displayed higher expression of NKp46 and CD69 but lower expression of CD25 in all NK subsets defined. Overall, T cell and NK cell features clearly clustered CFS individuals.

Conclusions: Our findings suggest that alterations in T-cell phenotype and proliferative response along with the specific signature of NK cell phenotype may be useful to identify CFS individuals. The striking down modulation of T cell mediated immunity may help to understand intercurrent viral infections in CFS.

Screening NK-, B- and T-cell phenotype and function in patients suffering from Chronic Fatigue Syndrome.  M Curriu et al  Journal of Translational Medicine, 20th March 2013

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Hypopituitarism – an alternative diagnosis to ME or CFS

Posted on 06/13/2013 by wames

One of the conditions that can be wrongly diagnosed as CFS is post-traumatic hypopituitarism (PTHP). Symptoms include fatigue, muscle weakness, dizziness and nausea and can occur at any time after a head injury, even many years later. Other causes of PTHP include tumors, stroke, infections of the brain, radiation treatment.

The pituitary gland produces hormones that control many functions of otherprovided by GPs and endocrinologists. Treatments vary depending on the type of damage to the gland.

More information:

Head injury and hypopituitarism

Christine’s story

Phil’s story

Pituitary foundation

 

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Differences in physical functioning between relatively active and passive patients with CFS

Posted on 06/12/2013 by wames

Research Abstract

Objective: According to the Cognitive behavioral therapy (CBT) protocol for patients with Chronic Fatigue Syndrome (CFS), therapists are advised to categorize patients in relatively active and passive patients. However, evidence to support the differences in physical functioning between these subgroups is limited. Using the baseline data from a multicentre randomized controlled trial (FatiGo), the differences in actual and perceived physical functioning between active and passive patients with CFS were evaluated.

Methods: Sixty patients, who received CBT during the FatiGo trial were included. Based on the expert opinion and using the definitions of subgroups defined in the CBT protocols, the therapist categorized the patient. Data from an activity monitor was used to calculate actual physical functioning, physical activity, daily uptime, activity fluctuations and duration of rest during daily life. Perceived physical functioning was assessed by measuring physical activity, physical functioning and functional impairment with the Checklist Individual Strength, Short Form-36 and Sickness-Impact Profile 8.

Results: Relatively active patients have a significantly higher daily uptime and show significantly less fluctuations in activities between days. Passive patients experience a significantly lower level of physical functioning and feel more functionally impaired in their mobility. However, no significant differences were found in the other actual or perceived physical functioning indices.

Conclusions: A clear difference in actual and perceived physical functioning between relatively active and passive patients with CFS as judged by their therapists could not be found. Future research is needed to form a consensus on how to categorize subgroups of patients with CFS.

Differences in physical functioning between relatively active and passive patients with Chronic Fatigue Syndrome  CWM Desiréeet al  Journal of Psychosomatic Research 03 June 2013

FatiGo study protocol: Cognitive behavioural therapy versus multidisciplinary rehabilitation treatment for patients with chronic fatigue syndrome: study protocol for a randomised controlled trial Vos-Vromans et al.

 

 

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Dr Nigel Speight outlines the history of ME

Posted on 06/12/2013 by wames

WAMES’ medical advisor and consultant paediatrician Nigel Speight reviews the major historical developments of the last 50 years, describes the clinical pattern and spectrum of severity, and then explores the current major controversies surrounding the subject.

Myalgic encephalomyelitis/chronic fatigue syndrome: Review of history, clinical features, and controversies.  Nigel Speight in Saudi J Med Med Sci 2013;1:11-3

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Mycotoxins found in people with CFS

Posted on 06/10/2013 by wames

Research Abstract 

Background: Over the past 20 years, exposure to mycotoxin producing mold has been recognized as a significant health risk. Scientific literature has demonstrated mycotoxins as possible causes of human disease in water-damaged buildings (WDB).

Aim: This study was conducted to determine if selected mycotoxins could be identified in human urine from patients suffering from chronic fatigue syndrome (CFS).

Method: Patients (n = 112) with a prior diagnosis of CFS were evaluated for mold exposure and the presence of mycotoxins in their urine. Urine was tested for aflatoxins (AT), ochratoxin A (OTA) and macrocyclic trichothecenes (MT) using Enzyme Linked Immunosorbent Assays (ELISA).

Results: Urine specimens from 104 of 112 patients (93%) were positive for at least one mycotoxin (one in the equivocal range). Almost 30% of the cases had more than one mycotoxin present. OTA was the most prevalent mycotoxin detected (83%) with MT as the next most common (44%). Exposure histories indicated current and/or past exposure to WDB in over 90% of cases. Environmental testing was performed in the WDB from a subset of these patients. This testing revealed the presence of potentially mycotoxin producing mold species and mycotoxins in the environment of the WDB. Prior testing in a healthy control population with no history of exposure to a WDB or moldy environment (n = 55) by the same laboratory, utilizing the same methods, revealed no positive cases at the limits of detection.

Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome  Joseph H. Brewer, Jack D. Thrasher, David C. Straus, Roberta A. Madison and Dennis Hooper  Toxins 2013, 5(4), 605-617

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HERV found in the guts of people with ME

Posted on 06/10/2013 by wames

Research Abstract

Background: Myalgic encephalomyelitis (ME) is a debilitating illness of unknown etiology characterized by neurocognitive dysfunction, inflammation, immune abnormalities and gastrointestinal distress. An increasing body of evidence suggests that disruptions in the gut may contribute to the induction of neuroinflammation.

Therefore, reports of human endogenous retroviral (HERV) expression in association with neuroinflammatory diseases prompted us to investigate the gut of individuals with ME for the presence of HERV proteins.

Results: In eight out of 12 individuals with ME, immunoreactivity to HERV proteins was observed in duodenal biopsies. In contrast, no immunoreactivity was detected in any of the eight controls. Immunoreactivity to HERV Gag and Env proteins was uniquely co-localized in hematopoietic cells expressing the C-type lectin receptor CLEC4C (CD303/BDCA2), the co-stimulatory marker CD86 and the class II major histocompatibility complex HLA-DR, consistent with plasmacytoid dendritic cells (pDCs).

Conclusion: Although the significance of HERVs present in the pDCs of individuals with ME has yet to be determined, these data raise the possibility of an involvment of pDCs and HERVs in ME pathology. To our knowledge, this report describes the first direct association between pDCs and HERVs in human disease.

Plasmacytoid Dendritic Cells in the Duodenum of Individuals Diagnosed with Myalgic Encephalomyelitis Are Uniquely Immunoreactive to Antibodies to Human Endogenous Retroviral Proteins   Kenny L de Meirleir et al  In Vivo March-April 2013 vol. 27 no. 2 177-187

 

 

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