Monitoring cytokines

Cytokines have been identified as playing a key role in the dysfunction found in ME.

Abstract

Serum and intracytoplasmic cytokines are mandatory in host defense against microbes, but also play a pivotal role in the pathogenesis of autoimmune diseases by initiating and perpetuating various cellular and humoral autoimmune processes.

The intricate interplay and fine balance of pro- and anti-inflammatory processes drive, whether inflammation and eventually organ damage will occur, or the inflammatory cascade quenches.

In the early and late, as well as inactive and active stages of autoimmune diseases, different cellular and molecular patterns can dominate in these patients. However, the simultaneous assessment of pro- and anti-inflammatory biomarkers aids to define the immunological state of a patient.

A group of the most useful inflammatory biomarkers are cytokines, and with increasing knowledge during the last decade their role have been well-defined in patients with autoimmune diseases and immunodeficiencies.

Multiple pathological processes drive the development of autoimmunity and immunodeficiencies, most of which involve quantitative and qualitative disturbances in regulatory cells, cytokine synthesis and signalling pathways.

The assessment of these biomarkers does not aid only in the mechanistic description of autoimmune diseases and immunodeficiencies, but further helps to subcategorize diseases and to evaluate therapy responses.

Here, we provide an overview, how monitoring of cytokines and regulatory cells aid in the diagnosis and follow-up of patients with autoimmune diseases and immunodeficiencies furthermore, we pinpoint novel cellular and molecular diagnostic possibilities in these diseases.

Assessment of intracellular cytokines and regulatory cells in patients with autoimmune diseases and primary immunodeficiencies – novel tool for diagnostics and patient follow-up, by LT Osnes, B Nakken, E Bodolay, P Szodoray in Autoimmune Reviews, 12 August 2013 [Epub 2013 Mar 26]

 

 

 

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ME/CFS epidemiological study in US

Abstract

In previous qualitative research on Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), researchers have focused on the experiences of patients with ME/CFS in tertiary care samples. This qualitative study examined the natural history of people with ME/CFS (n=19) from a community-based sample.

Findings highlighted multi-layered themes involving the illness experience and the physical construction of ME/CFS.

In addition, this study further illuminated unique sub-themes regarding community response and treatment, which have implications for understanding the progression of ME/CFS as well as experiences of those within patient networks. There is a need for more longitudinal qualitative research on epidemiological samples of patients with ME/CFS.

A qualitative natural history study of ME/CFS in the Community, by Valerie R. Anderson, Leonard A. Jason & Laura E. Hlavaty in Health Care for Women International, January 2014

 

 

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Bad sleep dramatically alters body

BBC News reports that a run of poor sleep can have a potentially profound effect on the internal workings of the human body according to UK researchers.

The activity of hundreds of genes was altered when people’s sleep was cut to less than six hours a day for a week.

Writing in the journal PNAS, the researchers said the results helped explain how poor sleep damaged health.

Heart disease, diabetes, obesity and poor brain function have all been linked to substandard sleep.

What missing hours in bed actually does to alter health, however, is unknown.

So researchers at the University of Surrey analysed the blood of 26 people after they had had plenty of sleep, up to 10 hours each night for a week, and compared the results with samples after a week of fewer than six hours a night.

More than 700 genes were altered by the shift. Each contains the instructions for building a protein, so those that became more active produced more proteins – changing the chemistry of the body.

Meanwhile the natural body clock was disturbed – some genes naturally wax and wane in activity through the day, but this effect was dulled by sleep deprivation.

Prof Colin Smith, from the University of Surrey, told the BBC: “There was quite a dramatic change in activity in many different kinds of genes.”

Areas such as the immune system and how the body responds to damage and stress were affected.

Prof Smith added: “Clearly sleep is critical to rebuilding the body and maintaining a functional state, all kinds of damage appear to occur – hinting at what may lead to ill health.

“If we can’t actually replenish and replace new cells, then that’s going to lead to degenerative diseases.”

He said many people may be even more sleep deprived in their daily lives than those in the study – suggesting these changes may be common.

Dr Akhilesh Reddy, a specialist in the body clock at the University of Cambridge, said the study was “interesting”.

He said the key findings were the effects on inflammation and the immune system as it was possible to see a link between those effects and health problems such as diabetes.

The findings also tie into research attempting to do away with sleep, such as by finding a drug that could eliminate the effects of sleep deprivation.

Dr Reddy said: “We don’t know what the switch is that causes all these changes, but theoretically if you could switch it on or off, you might be able to get away without sleep.

“But my feeling is that sleep is fundamentally important to regenerating all cells.”

How to get a better night’s sleep

 

 

 

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Deficient EBV cell response in CFS

Abstract

Epstein-Barr virus (EBV) has long been discussed as a possible causeor 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 a 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-α and IFN-γ was significantly lower in patients.

Multicolor flow cytometry revealed that the frequencies of EBNA-1-specific triple TNF-α/IFN-γ/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 Madlen Loebel et al in PlosOne, 15 January 2013

 

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Views on the nature of CFS

Literature review abstract

OBJECTIVES

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), has provoked much controversy and led to arguments between the medical profession and patient organizations. A particular focus for debate is the categorization of the condition as physical or psychological in its nature. The aim of this study was to compare how the written media, patient organizations and medical authorities regard the illness.

DESIGN

Content analysis of newspaper articles, ME patient organization websites, and medical websites and textbooks were assessed by two independent assessors.

SETTING

Three national UK newspapers, UK ME websites, and UK medical websites and textbooks, were accessed during 2010.

PARTICIPANTS

146 source files were scored from 36 patients’ organizations, 72 media articles and 38 medical authorities.

MAIN OUTCOME MEASURED

The overall opinion of an article or website was rated using a five point Likert scale, from ‘extremely psychological’ (scored as 1), ‘moderately psychological’ (2), ‘both psychological and physical’ (3), ‘moderately physical’ (4) or ‘extremely physical’ (5).

RESULTS

Eighty-nine percent (32 of 36) of ME patient organizations considered the illness to be physical, compared with 58% (42/72) of newspaper articles, and 24% (9/38) of medical authorities. Sixty-three percent (24/38) of medical authorities regarded the illness as both physical and psychological. The inter-group differences of the Likert scores were statistically significant (χ2 = 27.37, 2 df, P < 0.001).

CONCLUSION

The considerable disagreement, particularly between ME patient organizations and medical authorities, may help to explain the gulf in understanding between doctors and patients and the consequent reluctance of some patients to engage in behavioural

Views on the nature of chronic fatigue syndrome: content analysis, Zahra Hossenbaccus and Peter D White Journal of the Royal Society of Medicine, Short Reports January 2013 vol. 4 no. 1 4

 

 

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Carers & social care reform – Sylvia Penny interview

WAMES’ volunteer Sylvia Penny who cares for her adult daughter with ME, her adult son with asperger’s and her 90 year old mother, was one of the people interviewed on BBC Wales about the proposed changes to social care in Wales.

In the draft bill more people who look after disabled, sick and frail relatives could be entitled to help at home under proposals to change the law in Wales. Carers will have their needs assessed and could get a payment that puts them in control of their own care budget. But the Welsh government has said extra funding will not be required to deliver the Social Services and Wellbeing Bill.

WAMES joins other charities asking who will benefit, what support will be offered and when – 2016 is a long time away!

BBC news item: Helping hand for carers proposed in Wales

The Deputy Minister for Children and Social Services, Gwenda Thomas introduces the bill in a video on the Welsh Government website. (She speaks in Welsh first, then English)

According to the government the legislation will:

  • Strengthen powers for safeguarding of children and adults, so that vulnerable people at risk in our society can be protected more effectively;
  • Allow Welsh Ministers to consider extending the range of services available by direct payments, meaning people will have more control over the services they use;
  • Introduce national eligibility criteria and ensure people are assessed on what they need, rather than just on what services are available locally;
  • Introduce portable assessments, which means if people move from one part of Wales to another they will not require their needs to be re-assessed if these haven’t changed;
  • Introduce a National Outcomes Framework to set out very clearly what children and adults can expect from social services, to measure achievements and see where improvements are needed; Contribute to this through the I matter, we matter campaign
  • Introduce equivalent rights for carers so that people who care for someone such as an elderly or disabled relative or friend would get similar rights to the people they care for; and
  • Establish a National Adoption Service to improve the outcomes of children in need of a permanent family.
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FINE trial treatments cost effectiveness assessment

Provisional results of the cost effectiveness assessment of the treatments used in the FINE trial (2010) have been published. The original trial found that:

For patients with CFS/ME in primary care, pragmatic rehabilitation delivered by trained nurse therapists improves fatigue in the short term compared with unconstrained GP treatment as usual, but the effect is small and not statistically significant at one year follow-up. Supportive listening delivered by trained nurse therapists is not an effective treatment for CFS/ME.

Abstract (provisional)

Background

Nurse led self-help treatments for people with chronic fatigue syndrome/myalgic encephalitis (CFS/ME) have been shown to be effective in reducing fatigue but their cost-effectiveness is unknown.

Methods

Cost-effectiveness analysis conducted alongside a single blind randomised controlled trial comparing pragmatic rehabilitation (PR) and supportive listening (SL) delivered by primary care nurses, and treatment as usual (TAU) delivered by the general practitioner (GP) in North West England. A within trial analysis was conducted comparing the costs and quality adjusted life years (QALYs) measured within the time frame of the trial. 296 patients aged 18 and over with CFS/ME diagnosed using the Oxford criteria were included in the cost-effectiveness analysis.

Results

Treatment as usual is less expensive and leads to better patient outcomes compared with Supportive Listening. Treatment as usual is also less expensive than Pragmatic Rehabilitation. PR was effective at reducing fatigue in the short term, but the impact of the intervention on QALYs was uncertain. However, based on the results of this trial, PR is unlikely to be cost-effective in this patient population.

Conclusions

This analysis does not support the introduction of SL. Any benefits generated by PR are unlikely to be of sufficient magnitude to warrant recommending PR for this patient group on cost-effectiveness grounds alone. However, dissatisfaction with current treatment options means simply continuing with ‘treatment as usual’ in primary care is unlikely to be acceptable to patients and practitioners.

Cost-effectiveness of supported self-management for CFS/ME patients in primary care

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Sleep disruption in CFS

Dr Michael Breus explores the research into the effects of CFS on sleep. Excerpt from his article:

Disrupted sleep is a hallmark of chronic fatigue syndrome. Chronic fatigue is associated with a range of sleep problems, including:

  • Excessive daytime sleepiness
  • Non-restorative sleep (waking feeling tired even after sufficient or prolonged periods of rest)
  • Difficulty falling asleep and staying asleep
  • Sleep disorders such as obstructive sleep apnea, insomnia, and narcolepsy

Despite the frequency with which people with chronic fatigue syndrome experience sleep disturbances, the connection between sleep and chronic fatigue—like so much else about the disorder—is not well understood.

Researchers at Australia’s Victoria University have conducted a review of research related to sleep and chronic fatigue. Their analysis sheds some light on possible reasons for poor sleep among patients with chronic fatigue.

  • Sleep complaints are common among chronic fatigue patients, but there is no single or typical sleep experience for people with this disorder. For the past two decades, research has shown high levels of sleep disorders among adults with this condition:
  • Several studies, including this one, have found that more than half of chronic fatigue patients have some type of sleep disorder
  • This study showed chronic fatigue patients experience greater levels of disrupted sleep than patients with multiple sclerosis
  • More than 50% of chronic fatigue patients in this study had obstructive sleep apnea or sleep-related movement disorders, such as restless leg syndrome
  • A similar study showed 46% of chronic fatigue patients suffering from obstructive sleep apnea
  • [Another] large, population-based study showed nearly 80% of chronic fatigue patients experienced un-refreshing sleep, and 20% had obstructive sleep apnea or narcolepsy

An important area of research into the connection between sleep and chronic fatigue looks at the role of pain. The physical pain associated with chronic fatigue may be a significant factor in the sleep problems experienced by people with chronic fatigue. We know that pain and sleep influence each other in multiple ways. Pain can make sleep difficult to achieve and sustain. Lack of sleep, in turn, can make us more sensitive to pain. Studies like this one have shown that pain causes chronic fatigue patients to wake more often throughout the night than either healthy people or those with depression. And this study found that disruption to slow wave sleep in healthy people triggered physical pain and fatigue similar to people with chronic fatigue syndrome. As researchers themselves note, the role of muscle pain in sleep disorders among chronic fatigue sufferers is an area of research that warrants more attention and further study.

There’s another body of research that suggests that people with chronic fatigue experience changes to their sleep cycles that could result in less restorative sleep. Studies have shown that people with chronic fatigue may spend less time in slow wave sleep than healthy people. Slow wave sleep occurs during the sleep stages 3 and 4, and is the most restorative sleep we can experience. Studies have shown that chronic fatigue patients spend a reduced amount of time in slow wave sleep and in REM sleep than healthy people. To date, there is less evidence for the reduction in REM sleep than in slow wave sleep. The cause of this disturbance to sleep cycles is unclear. However, there is evidence of a possible link between systematic inflammation and disruptions to sleep cycles, particularly to time spent in slow wave sleep. Systemic inflammation in the body is common among chronic fatigue patients, and may play a role in the persistent problem of non-refreshing sleep.

Still another area of study suggests that changes to the body’s nervous system activity may play a role in the sleep disruptions experienced by people with chronic fatigue. Chronic fatigue patients experience alterations to the functioning of their nervous systems during waking hours, and these can continue during sleep. Several studies have shown that chronic fatigue patients are more likely to experience disruptions to normal nervous system activity during sleep, and this may be affecting the quality of sleep they experience.

Chronic Fatigue Syndrome: How Does It Affect Sleep? Dr Michael J Breus

Sleep abnormalities in chronic fatigue syndrome/myalgic encephalomyelitis: a review   Dr Melinda L. Jackson, Dr Dorothy Bruck, School of Social Sciences and Psychology, Victoria University, Victoria, Australia

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WAMES & MWWMEG pool resources

On 1st January 2013 WAMES and the Mid & West Wales ME Group (MWWMEG) merged with WAMES. We already had a good working relationship with MWWMEG but we are excited about this opportunity to pool resources, learn from MWWMEG and improve our support and representation of people with ME throughout Wales.  So, what’s next?

A new magazine due out in February

MWWMEG’s informative newsletter was widely appreciated by their members so we have decided to replace our small infrequent newsletter with a magazine which we hope will be of interest to people all over Wales. It will be available free of charge online or by email,  or paper copies can be bought by subscription.  More information in February.

Choose how to get involved

  • become a member and help direct the work of WAMES
  • volunteer and help us to make a difference for people with ME
  • subscribe or join the free e-mailing list
  • donate

OR do all 4!

Support group meetings

MWWMEG’s local get togethers will continue as independent groups, with the support of WAMES. We are always keen to help people to set up new meetings. Find out about all Welsh support groups here.

What else?

We will continue to campaign ,  provide a helpline and information for people with ME, carers and professionals, to the best of our ability. But remember, we are a small organisation with limited funds so please think about how you can help!

 

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Carer Sylvia from WAMES & Text Santa appeal

Sylvia Penny from WAMES talks about what it is like being a full-time carer in  ITV’s Text Santa appeal video.

She is also interviewd on the Carers UK website.

Support ITV’s text Santa appeal and help raise vital funds for Carers UK

 

 

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