Diagnosing CFS in South Asians

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

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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Vision related symptoms in CFS/ME

Extract:

People diagnosed with CFS/ME consistently report that they experience vision-related symptoms associated with their illness and some of these reports are being verified experimentally.  Although vision-related symptoms may represent a significant clinical feature of CFS/ME that could be useful in its diagnosis, they have yet to be included in clinical guidelines.

A recently developed, standardised measure designed to assess core CFS/ME symptoms, The DePaul Symptom Questionnaire (DSQ),5 includes four vision-related items…

Vision-related symptoms as a clinical feature of chronic fatigue syndrome/myalgic encephalomyelitis? Evidence from the DePaul Symptom Questionnaire, by Claire V Hutchinson, John Maltby, Stephen P Badham, Leonard A Jason, in British Journal of Opthalmology, 1 November 2013

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Experiences of daily activity in CFS/ME & 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.

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

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

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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French oak wood extract

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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Exercise testing and CFS

Abstract

PURPOSE

Cardiopulmonary exercise testing (CPET) is used to determine the etiology of unexplained exercise symptoms in otherwise healthy patients and those with well defined cardiopulmonary disease. Test results vary by baseline physical activity levels which are difficult to assess objectively.

METHODS

We performed submaximal exercise testing on 40 physically active, healthy control patients as part of a prospective trial to evaluate the exercise response in patients with chronic fatigue syndrome. All patients provided a self-assessment of fitness using a series of previously validated visual analogue scales (VAS). We evaluated the relationship between baseline fitness and physiologic response to exercise.

RESULTS

Mean age and BMI for the group were 30.7±8.8 and 27.0±3.6 respectively. There were 25 males (62.5%), 23 caucasians (57.5%) and 13 (32.5%) African Americans.

On a VAS from one to ten with ten being optimal, patients rated their current endurance, fitness and muscular strength at 7.8±1.5, 7.9±1.1 and 7.3±1.9. Self-assessment of endurance was significantly correlated with maximum respiratory rate (r=-0.34, p=0.03), fitness showed a trend toward correlation with heart rate reserve (r=0.27, p=0.09) and muscular strength was significantly correlated with peak heart rate (r=-0.43, p=0.01), heart rate reserve (r=0.33, p=0.04) and O2-pulse at VO2 max (r=0.37, p=0.02).

Female assessment of fitness and muscle strength showed good correlation with work rate achieved (0.40 and 0.53 respectively).

CONCLUSIONS

In a group of young, physically fit patients self assessment is correlated with aerobic fitness measured on symptom targeted, sub-maximal exercise testing. VAS scores for muscular strength seemed to be a better predictor of the cardiac response to exercise than were scores for endurance or fitness.

CLINICAL IMPLICATIONS

Visual analogue scales can be used to provide a baseline assessment of fitness, In conjunction with other factors known to predict responses to exercise these scales could theoretically help better define normality for a given patient.

Self-Assessment Using a Validated Visual Analogue Scale Predicts Response to Submaximal Exercise Testing, by T Hauser & A Holley in Chest Journal, 1 October 2013

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Corff Gwarchod Iechyd yn ceisio barn am yr Iaith Gymraeg mewn gwasanaethau Gogledd Cymru

Mae Corff Gwarchod Iechyd Gogledd Cymru – CIC, yn annog pobl i roi eu barn am sut mae’r gwasanaethau GIG lleol yn cwrdd â gofynion cleifion o ran eu dewis o iaith.

Dywedodd Geoff Ryall-Harvey, Prif Swyddog Cyngor Iechyd Cymuned Gogledd Cymru (CIC), ‘Mae’r adroddiadau diweddar yn y wasg sy’n sôn fod rhai cleifion wedi cael problemau gyda fferyllfeydd yn paratoi presgripsiynau sydd wedi eu hysgrifennu gyda’r cyfarwyddiadau yn y Gymraeg o bryder gwirioneddol i ni.’

Gellir gweld arolwg ar-lein CIC

I gael gwybodaeth bellach am yr arolwg neu i roi gwybod eich barn i CIC, cysylltwch â CIC ar 01248 679284 neu ebost neu ewch i’n gwefan .

 

 

 

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Exercise & ME/CFS the evidence, event Feb 5th Bristol

“Exercise and ME/CFS – the evidence” is an event organised by the Bristol North Fibro & ME/CFS Support Group on 5th Feb from 6-9.15 pm at the Watershed in Bristol.

The evening will include a short 30 min version of the film – the young ME patients’ stories – backed up by a presentation by Prof Mark VanNess about the research from the Workwell Foundation with Staci Stevens and Chris Snell, previously at the Pacific Fatigue Lab California. This work is very significant in that it objectively demonstrates the reality of the cardinal symptom of ME – post exertional malaise, or the post exertional exacerbation of symptoms which can prove so damaging to patients. Their work counters assertions made by proponents of graded exercise and the PACE Trial that the fatigue and disability of CFS and ME is merely caused by deconditioning and that GET and CBT are the most effective treatment options for patients.

Dr Nigel Speight (WAMES advisor) who speaks in the film will also explain some of the problems encountered by families and medical professionals when trying to help young patients.

Attendance can gain 2 CPD credits for health professionals.

Tickets – £10 – are available from the website

More information and a programme on the film website

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