Experiences of daily activity in CFS/ME & implications for rehabilitation programmes

Posted on 01/26/2014 by wames

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.

Experiences of daily activity in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their implications for rehabilitation programmes, by Sue Pemberton and Diane L. Cox in Disability and Rehabilitation, 27 December 2013 [Epub ahead of print]

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Low oxygen uptake by muscle cells causes exercise intolerance

Posted on 01/26/2014 by wames

Abstract

Background

The insufficient metabolic adaptation to exercise in Chronic Fatigue Syndrome (CFS) is still being debated and poorly understood.

Methods

We analysed the cardiopulmonary exercise tests of CFS patients, idiopathic chronic fatigue (CFI) patients and healthy visitors. Continuous non-invasive measurement of the cardiac output by Nexfin ® (BMEYE B.V. Amsterdam, the Netherlands) was added to the cardiopulmonary exercise tests. The peak oxygen extraction by muscle cells and the increase of cardiac output relative to the increase of oxygen uptake (∆Q’/∆V’O2) were measured, calculated from the cardiac output and the oxygen uptake during incremental exercise.

Results

The peak oxygen extraction by muscle cells was 10.83 ± 2.80 ml/100ml in 178 CFS women, 11.62 ± 2.90 ml/100ml in 172 CFI, and 13.45 ± 2.72 ml/100ml in 11 healthy women (ANOVA: P=0.001), 13.66 ± 3.31ml/100ml in 25 CFS men, 14.63 ± 4.38 ml/100ml in 51 CFI, and 19.52 ± 6.53 ml/100ml in 7 healthy men (ANOVA: P=0.008).

The ∆Q’/∆V’O2 was > 6 L/L (normal ∆Q’/∆V’O2 ≈5 L/L) in 70% of the patients and in 22% of the healthy group.

Conclusion

Low oxygen uptake by muscle cells causes exercise intolerance in a majority of CFS patients, indicating insufficient metabolic adaptation to incremental exercise. The high increase of the cardiac output relative to the increase of oxygen uptake argues against deconditioning as a cause for physical impairment in these patients.

Decreased oxygen extraction during cardiopulmonary exercise test in patients with chronic fatigue syndrome, by Ruud CW Vermeulen, Ineke WG Vermeulen van Eck in Journal of Translational Medicine 2014, 12:20

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NPD1 – potential drug for nerve pain in CFS

Posted on 01/22/2014 by wames

Abstract

Prevalence of neuropathic pain is high after major surgery. However, effective treatment for preventing neuropathic pain is lacking.

Here we report that perisurgical treatment of neuroprotectin D1/protectin D1 (NPD1/PD1), derived from docosahexaenoic acid, prevents nerve injury-induced mechanical allodynia and ongoing pain in mice.

Intrathecal post-treatment of NPD1/PD1 also effectively reduces established neuropathic pain and produces no apparent signs of analgesic tolerance. Mechanistically, NPD1/PD1 treatment blocks nerve injury-induced long-term potentiation, glial reaction, and inflammatory responses, and reverses synaptic plasticity in the spinal cord.

Thus, NPD1/PD1 and related mimetics might serve as a new class of analgesics for preventing and treating neuropathic pain.

Neuroprotectin/protectin D1 protects against neuropathic pain in mice after nerve trauma, by ZZ Xu et al, in Ann Neurol 2013 Sep; 74(3):490-5.

Comment by Cort Johnson:

Abstract

From opioids to anticonvulsants to antidepressants, etc. doctors throw a wide variety of drugs at nerve pain, yet the prognosis is generally poor with 40-60% of patients receiving only partial relief. (Some studies indicate alpha lipoic acid and benfotiamine (thiamine) can be helpful for some, as well.)

Reducing the inflammation in the nervous system could reduce the difficult to treat nerve pain as well. Nerve pain comes in many shades and can produce burning, tingling, numbness, shooting, stabbing, allodynia, etc. Usually associated with central sensitization ( increased pain sensitivity), inflammation in the brain/spinal column appears to play a significant role but few drugs are effective at reducing inflammation there.

Lyrica’s incredible success, in spite of issues with side effects and efficacy, highlights the great need for better means of dealing with neuropathic pain. Increasing restrictions on opioid use makes the development of more effective means of pain relief imperative. In the next couple of blogs we’re going to look at two drugs under development that may help at some point.

Probably the most intriguing is a compound called neuroprotectin D1 (NPD1) – the subject of increasingly intense investigation. NPDI has been mostly investigated as a protective agent in central nervous system, eye and kidney disorders but a recent study suggested it may be effective against the hardest to treat pain of all; nerve pain. Enter a potentially cheap drug derived from a fatty acid often used in chronic fatigue syndrome and fibromyalgia.

Derived from DHA, an omega-3 fatty acid found in fish oils… In contrast to omega-6 fatty acids which have pro-inflammatory effects, omega-3 fatty acids have anti-inflammatory effects.

Studies have not generally borne out their efficacy in ME/CFS but they are commonly recommended and used. With NDPI clocking in at about 1,000 times the potency of its precursor, DHA, NPDI – if it ever gets to market – will be like fish oil on speed. NDPI is potentially much more than a pain reliever; indeed, pain is only the latest symptom NDPI is being thrown at. An aptly named drug, neuroprotectin D1 is produced in response to a variety of conditions, some of which occur in chronic fatigue syndrome and fibromyalgia, including oxidative stress (high in ME/CFS/FM), protein misfolding (perhaps occurring in ME/CFS), seizures and brain ischemia-reperfusion (conjectured to occur in ME/CFS/FM).

Drug Under Development Spells Hope for Pain in Fibromyalgia and Chronic Fatigue Syndrome, by Cort Johnson

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Epstein Barr virus following immune deficiency found in CFS subgroup

Posted on 01/22/2014 by wames

Abstract

Epstein-Barr virus (EBV) has long been discussed as a possible cause or trigger of Chronic Fatigue Syndrome (CFS).

In a subset of patients the disease starts with infectious mononucleosis and both enhanced and diminished EBV-specific antibody titers have been reported. In this study, we comprehensively analyzed the EBV-specific memory B- and T-cell response in patients with CFS. While we observed no difference in viral capsid antigen (VCA)-IgG antibodies, EBV nuclear antigen (EBNA)-IgG titers were low or absent in 10% of CFS patients.

Remarkably, when analyzing the EBV-specific memory B-cell reservoir in vitro diminished or absent number of EBNA-1- and VCA-antibody secreting cells was found in up to 76% of patients. Moreover, the ex vivo EBV-induced secretion of TNF-a and IFN-c was significantly lower in patients. Multicolor flow cytometry revealed that the frequencies of EBNA-1-specific triple TNF-a/IFN-c/IL-2 producing CD4+ and CD8+ T-cell subsets were significantly diminished whereas no difference could be detected for HCMV-specific T-cell responses.

When comparing EBV load in blood immune cells, we found more frequently EBER-DNA but not BZLF-1 RNA in CFS patients compared to healthy controls suggesting more frequent latent replication. Taken together, our findings give evidence for a deficient EBV-specific B- and T-cell memory response in CFS patients and suggest an impaired ability to control early steps of EBV reactivation. In addition the diminished EBV response might be suitable to develop diagnostic marker in CFS.

Deficient EBV-Specific B- and T-Cell Response in Patients with Chronic Fatigue Syndrome, by Madelin Loebel et al in PLoS ONE 9(1): e85387, January 2014

 

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CFS patients feel increasingly isolated

Posted on 01/21/2014 by wames

Sufferers of Chronic Fatigue Syndrome (CFS) are feeling increasingly isolated due to their family and friends’ lack of understanding of their condition, a study has revealed.

The study, carried out by talkhealth, one of the UK’s leading online social Health communities, revealed that a massive 70 per cent of CFS sufferers felt that their family and friends did not understand their condition and appreciate the affect it had on their lives.

Furthermore, nearly half of the respondents felt that their condition had not been taken seriously by a medical professional, adding to their feelings of isolation.

The study showed that the top five most common symptoms experienced by CFS sufferers are tiredness after exertion, un-refreshing sleep, muscle and joint pain, chronic physical exhaustion and cognitive difficulties such as memory loss.

Dr Jon Rees, a spokesperson for talkhealth comments:

“Chronic fatigue syndrome is something I see surprisingly often as a GP. It is an extremely frustrating condition not only for patients who often feel that their problems are not taken seriously but also for relatives and friends who may struggle to understand a condition that has no outward signs of physical illness. Patients may also experience cynicism from some people in the medical profession including doctors, who do not recognise CFS as a true medical condition. However GPs are increasingly realising the true impact of the symptoms and are better equipped to offer support and onward referral to specialist services.”

Dr Rees continues:

“It is vital that parents receive adequate support as CFS can have a huge impact on their quality of life. They must be fully assessed for any underlying cause that can be treated, such as underactive thyroid or coeliac disease but if no cause can be identified and the symptoms are significant, referral to a specialist chronic fatigue service can often be useful.”

Chronic fatigue syndrome (CFS), affecting 250,000 people in the UK, causes persistent fatigue (exhaustion) that affects everyday life and doesn’t go away with sleep or rest.

The condition is also known as ME, which stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord. Both CFS and ME are commonly used terms.

CFS patients feel increasingly isolated,  by Taryn Davies in FemaleFirst.co.uk,  20 September 2013

 

 

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Association between cognitive performance, physical fitness, and physical activity level

Posted on 01/21/2014 by wames

Abstract

Limited scientific evidence suggests that physical activity is directly related to cognitive performance in patients with chronic fatigue syndrome (CFS).

To date, no other study has examined the direct relationship between cognitive performance and physical fitness in these patients. This study examined whether cognitive performance and physical fitness are associated in female patients with CFS and investigated the association between cognitive performance and physical activity level (PAL) in the same study sample.

We hypothesized that patients who performed better on cognitive tasks would show increased PALs and better performance on physical tests. The study included 31 women with CFS and 13 healthy inactive women.

Participants first completed three cognitive tests. Afterward, they undertook a test to determine their maximal handgrip strength, performed a bicycle ergometer test, and were provided with an activity monitor.

In patients with CFS, lower peak oxygen uptake and peak heart rate were associated with slower psychomotor speed (p<0.05). Maximal handgrip strength was correlated with working memory performance (p<0.05). Both choice and simple reaction time were lower in patients with CFS relative to healthy controls (p<0.05 and p<0.001, respectively).

In conclusion, physical fitness, but not PAL, is associated with cognitive performance in female patients with CFS.

Association between cognitive performance, physical fitness, and physical activity level in women with chronic fatigue syndrome, by Kelly Ickmans, PT, MSc et al, in the Journal of Rehabilitation Research and Development (JRRD), 10 September 2013.

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Medical students’ views of CFS

Posted on 01/21/2014 by wames

Abstract 

Chronic fatigue syndrome receives little attention in the medical curriculum. This study explores UK medical students’ knowledge of and attitudes towards chronic fatigue syndrome.

Semi-structured interviews (average length 22 minutes) were conducted with 21 participants (7 females and 14 males) in years 3 (n=4), 4 (n=11) and 5 (n=6) of their studies. Inductive thematic analysis taking a realist perspective produced three themes: limited knowledge, influences on attitudes and training needs.

Students acquired their knowledge and attitudes largely from informal sources and expressed difficulty understanding chronic fatigue syndrome within a traditional biomedical framework. Incorporating teaching about chronic fatigue syndrome into the medical curriculum within the context of a biopsychosocial understanding of illness could encourage more positive attitudes towards chronic fatigue syndrome.

Understanding medical students’ views of Chronic Fatigue Syndrome: A qualitative study by Alexandra Laura Stenhoff, Shireen Sadreddini, Sarah Peters, Alison Wearden in the Journal of Health Psychology, 20 September 2013. (e-published before print)

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Diagnosing CFS in South Asians

Posted on 01/21/2014 by wames

Abstract

BACKGROUND

Chronic fatigue syndrome/myalgic encephalitis (CFS/ME) is rarely diagnosed in South Asia (SA), although the symptoms of this condition are seen in the population. Lessons from UK based South Asian, Black and Minority Ethnic (BME) communities may be of value in identifying barriers to diagnosis of CFS/ME in SA.

OBJECTIVE

To explore why CFS/ME may not be commonly diagnosed in SA. Settings and Design: A secondary analysis of qualitative data on the diagnosis and management of CFS/ME in BME people of predominantly South Asian origin in the UK using 27 semi-structured qualitative interviews with people with CFE/ME, carers, general practitioners (GPs), and community leaders.

RESULTS

CFS/ME is seen among the BME communities in the UK. People from BME communities in the UK can present to healthcare practitioners with vague physical complaints and they can hold a biomedical model of illness. Patients found it useful to have a label of CFS/ME although some GPs felt it to be a negative label. Access to healthcare can be limited by GPs reluctance to diagnose CFS/ME, their lack of knowledge and patients negative experiences. Cultural aspects among BME patients in the UK also act as a barrier to the diagnosis of CFS/ME.

CONCLUSION

Cultural values and practices influence the diagnosis of CFS/ME in BME communities. The variations in the perceptions around CFS/ME among patients, carers, and health professionals may pose challenges in diagnosing CFS/ME in SA as well. Raising awareness of CFS/ME would improve the diagnosis and management of patients with CFS/ME in SA.

Diagnosing chronic fatigue syndrome in south asians: Lessons from a secondary analysis of a UK qualitative study, by R  Erandie Ediriweera De Silva, Kerin Bayliss, Lisa Riste, Carolyn A Chew-Graham in the Journal of Family Medicine and Primary Care 2013;2:277-82

 

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Lactic acid bacteria (probiotics) as treatment for IBS

Posted on 01/16/2014 by wames

Abstract

Irritable bowel syndrome (IBS) is a multifactorial chronic disorder characterized by various abdominal complaints and a worldwide prevalence of 10% – 20%. Although its etiology and pathophysiology are complex and still not completely understood, aberrations along the microbe-gut-brain axis are known to play a central role.

IBS is characterized by interrelated alterations in intestinal barrier function, gut microbe composition, immune activation, afferent sensory signaling and brain activity. Pharmaceutical treatment is generally ineffective and, hence, most therapeutic strategies are based on non-drug approaches.

A promising option is the administration of probiotics, in which lactic acid bacteria strains are considered specifically beneficial. This review aims to provide a concise, although comprehensive, overview of the role of lactic acid bacteria in the pathophysiology and treatment of IBS.

The Role of Lactic Acid Bacteria in the Pathophysiology and Treatment of Irritable Bowel Syndrome (IBS), by Julia König, Ignacio Rangel, Robert J. Brummer, in Food and Nutrition Sciences (Open Access), November 13.

 

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French oak wood extract

Posted on 01/16/2014 by wames

Abstract

Aim: The aim of this supplement study was to evaluate French oak wood extract (Robuvit®, Horphag Research Ltd) used as a supplement in association with a defined management plan for chronic fatigue syndrome (CFS) in healthy subjects with CFS, a condition that has, so far, no specific treatment or management standards.

Methods: Robuvit® is a new proprietary and exclusive extract of oak wood with important antoxidant actions. The dosage of the supplementation was 200 mg/day for at least 6 months. The CFS questionnaire and the Brief Mood Introspection Scale (BMIS) questionnaire were used to evaluate mood variations associated with CFS patients. The CFS form includes an analogue scale to record the variations of single symptoms with a score range of 0-10. At inclusion into the registry study, at least 5 symptoms were present. All subjects (age range 35-44; BMI range 24-26) with CFS were tested for oxidative stress: 61 out of 91 subjects had an increased value of oxidative stress. The BMIS scale evaluating mood changes in time was also used. The evaluation was repeated at 3 and 6 months.

Results: Out of 91 eligible subjects with CFS, 48 subjects (31 with increased oxidative stress) were accepted as part of the supplement registry study using Robuvit; 43 (30 with increased oxidative stress) were accepted as controls using only the management plan. In the Robuvit® group there were 3 drop outs; also 3 controls were lost. Oxidative stress was increased in 64.58% of subjects that used Robuvit and in 69.7% of controls. The average values of oxidative stress were expressed for the whole group. The average follow up was 199.3;9.2 days in the Robuvit group and 202.2;5.5 in the control group with a minimum of 6 months.

Considering variations in oxidative stress, there was no significant average change in controls, but a significant decrease from the initial values was observed in Robuvit subjects after 3 and 6 months. The CFS questionnaire variations in score indicated that there was a significant improvement for most symptoms after 3 and 6 months in the Robuvit group. Positive variations were also present in controls, indicating the positive effect of an increased attention to CFS. The improvement in signs/symptoms was significantly more valuable in subjects using the oak wood extract considering the main 8 symptoms and the accessory symptoms.

Considering the BMIS variations, the totals for positive and negative items were significantly more favourable for Robuvit subjects. Overall mood evaluation in the oak wood extract group improved from an inclusion average of -6.93;2.1 to +4.32;2.6 at 6 months; in contrast it changed from -6.5;2.5 to -3.4;1.5 in controls. No side effects were observed during the supplementation with Robuvit. The compliance was optimal with 93% of the capsules correctly used.

Conclusion: This promising pilot supplement registry study indicates a new opportunity of management for these difficult and often neglected patients. Correlation between oxidative stress and CFS have to be better explored.

Improved management of primary chronic fatigue syndrome with the supplement French oak wood extract (Robuvit®): a pilot, registry evaluation by G Belcaro et al, in  Panminerva Med. 2013 Nov 14. [Epub ahead of print]

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