Anti-neural antibody response in Lyme v ME/CFS

No research abstract available:

Anti-neural antibody response in patients with post- treatment Lyme disease symptoms versus those with myalgic encephalomyelitis/chronic fatigue syndrome, by Ajamian M, Cooperstock M, Wormser GP, Vernon SD, Alaedini A. in Brain Behav Immun. 2015 Aug;48:354-5.

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Mitoprotective dietary approaches for ME/CFS

Research abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is an idiopathic illness characterized by debilitating fatigue and neuro-immune abnormalities. A growing body of evidence proposes mitochondrial dysfunction as a central perpetrator of the illness due to activation of immune-inflammatory pathways that burden the mitochondria.

Under a model of mitochondrial dysfunction, this paper explores dietary strategies that are mitoprotective.

Studied for decades, the cellular mechanisms of ketogenic diets, fasting, and caloric restriction now reveal mitochondria-specific mechanisms which could play a role in symptom reduction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Future research should examine the physiological effects of these dietary strategies in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Mitoprotective dietary approaches for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Caloric restriction, fasting, and ketogenic diets, by Courtney Craig in Medical Hypotheses, 21 August 2015

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The many roads to mitochondrial dysfunction in neuroimmune & neuropsychiatric disorders

Research abstract:

BACKGROUND

Mitochondrial dysfunction and defects in oxidative metabolism are a characteristic feature of many chronic illnesses not currently classified as mitochondrial diseases. Examples of such illnesses include bipolar disorder, multiple sclerosis, Parkinson’s disease, schizophrenia, depression, autism, and chronic fatigue syndrome.

DISCUSSION

While the majority of patients with multiple sclerosis appear to have widespread mitochondrial dysfunction and impaired ATP production, the findings in patients diagnosed with Parkinson’s disease, autism, depression, bipolar disorder schizophrenia and chronic fatigue syndrome are less consistent, likely reflecting the fact that these diagnoses do not represent a disease with a unitary pathogenesis and pathophysiology.

However, investigations have revealed the presence of chronic oxidative stress to be an almost invariant finding in study cohorts of patients afforded each diagnosis. This state is characterized by elevated reactive oxygen and nitrogen species and/or reduced levels of glutathione, and goes hand in hand with chronic systemic inflammation with elevated levels of pro-inflammatory cytokines.

SUMMARY

This paper details mechanisms by which elevated levels of reactive oxygen and nitrogen species together with elevated pro-inflammatory cytokines could conspire to pave a major road to the development of mitochondrial dysfunction and impaired oxidative metabolism seen in many patients diagnosed with these disorders.

The many roads to mitochondrial dysfunction in neuroimmune and neuropsychiatric disorders, by Gerwyn Morris and Michael Berk in BMC Medicine, 1 April 2015

 

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Multidisciplinary rehabilitation treatment versus CBT for patients with CFS

Abstract

OBJECTIVES:

The aim of this trial was to evaluate the difference in treatment effect, at 26 and 52 weeks after the start of treatment, between cognitive behavioural therapy (CBT) and multidisciplinary rehabilitation treatment (MRT) for patients with chronic fatigue syndrome (CFS).

DESIGN:

Multicentre, randomized controlled trial of patients with CFS. Participants were randomly assigned to MRT or CBT.

SETTING:

Four rehabilitation centres in the Netherlands.

SUBJECTS:

A total of 122 patients participated in the trial.

MAIN OUTCOME MEASURES:

Primary outcomes were fatigue measured by the fatigue subscale of the Checklist Individual Strength and health-related quality of life measured by the Short-Form 36. Outcomes were assessed prior to treatment and at 26 and 52 weeks after treatment initiation.

RESULTS:

A total of 114 participants completed the assessment at 26 weeks, and 112 completed the assessment at 52 weeks. MRT was significantly more effective than CBT in reducing fatigue at 52 weeks. The estimated difference in fatigue between the two treatments was -3.02 [95% confidence interval (CI) -8.07 to 2.03; P = 0.24] at 26 weeks and -5.69 (95% CI -10.62 to -0.76; P = 0.02) at 52 weeks. Patients showed an improvement in quality of life over time, but between-group differences were not significant.

CONCLUSION:

This study provides evidence that MRT is more effective in reducing long-term fatigue severity than CBT in patients with CFS. Although implementation in comparable populations can be recommended based on clinical effectiveness, it is advisable to analyse the cost-effectiveness and replicate these findings in another multicentre trial.

Multidisciplinary rehabilitation treatment versus cognitive behavioural therapy for patients with chronic fatigue syndrome: a randomized controlled trial, by DC Vos-Vromans et al. in J Intern Med, 2015 Aug 26.  [Epub ahead of print]

 

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Comparison of Q fever fatigue syndrome and CFS

Research abstract:

OBJECTIVE: Comparison of Q fever fatigue syndrome (QFS) and chronic fatigue syndrome (CFS) patients, with a focus on markers of inflammation and fatigue-related cognitive-behavioural variables.

METHODS: Data from two independent prospective studies on QFS (n=117) and CFS (n=173), respectively, were pooled and analyzed.

RESULTS: QFS patients were less often female, had a higher BMI, and had less often received treatment for depression before the onset of symptoms. After controlling for symptom duration and correcting for differences in diagnostic criteria for QFS and CFS with respect to the level of impairment and the presence of additional symptoms, differences in the proportion of females and BMI remained significant.

After correction, QFS patients were also significantly older. In all analyses QFS patients were as fatigued and distressed as CFS patients, but reported less additional symptoms. QFS patients had stronger somatic attributions, and higher levels of physical activity. No differences were found with regard to inflammatory markers and in other fatigue-related cognitive-behavioural variables. The relationship between cognitive-behavioural variables and fatigue, previously established in CFS, could not be confirmed in QFS patients with the exception of the negative relationship between physical activity and fatigue.

CONCLUSION: Differences and similarities between QFS and CFS patients were found. Although the relationship between perpetuating factors and fatigue previously established in CFS could not be confirmed in QFS patients, the considerable overlap in fatigue-related cognitive-behavioural variables and the relationship found between physical activity and fatigue may suggest that behavioural interventions could reduce fatigue severity in QFS patients.

A comparison of patients with Q fever fatigue syndrome and patients with chronic fatigue syndrome with a focus on inflammatory markers and possible fatigue perpetuating cognitions and behaviour, by SP Keijmel et al. in J Psychosom Res, 2015 Jul 17.

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Teenage kickboxer with CFS

Caerphilly teen kickboxer to defend world crown, by Caio Iwan in South Wales Argus online, Wednesday 5 August 2015

A TEENAGE kickboxer from Pontllanfraith is set to travel to Germany to defend her world crown – despite nearly having her legs amputated as a child.

At the age of three, Amber Murphy contracted meningococcal septicaemia and was on life support for three days.

Doctors warned they might have had to amputate both her legs, but little Amber fought back and made a full recovery.

“Since that day she has lived every day to the full, she wants to do everything, go everywhere and do well in all she does,” her mother Suzanne Roberts said.

Now aged 16, Amber is the kickboxing world champion in the 13 to 16 category and travels to Germany in October for the World Championships to defend her title.

She took up kickboxing at the age of five and has more than 130 medals and trophies to her credit from various competitions.

Amber – who trains with Devils Martial Arts in Oakdale – has been abroad with the Welsh Squad on several occasions, including visits to Holland, Rome, Cyprus, Paris and Germany.

She has gone on to achieve a black belt and various prestigious titles including European Gold, ICO Welsh Open Champion, Lordswood Open Champion, ICO Battle of Wales Champion, and the world title which she won in Paris in November 2012.

But despite overcoming meningitis as a child, Amber now faces a daily fight after being diagnosed with Chronic Fatigue Syndrome two years ago.

Ms Roberts added: “[It] means that she always feels extremely tired no matter how much sleep she has along with a whole host of other symptoms.

“She was told by physiotherapists that if she could not get her symptoms under control then she would have to give up kickboxing to which she replied ‘over my dead body’! She tries very hard for the CFS not to rule her life and trains and competes as normal.”

Amber, who is already being sponsored by Blackwood Rotary Club this year, is looking for donations or sponsors to help her travel.

If you can help, contact Suzanne Roberts on 07912 893 498 or at sueroberts69@hotmail.co.uk

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Dermatological manifestations of POTS

Research abstract:

Postural tachycardia syndrome (POTS) is a syndrome of excessive tachycardia with orthostatic challenge, and relief of such symptoms with recumbence.

There are several proposed subtypes of the syndrome, each with unique pathophysiology. Numerous symptoms such as excessive tachycardia, lightheadedness, blurry vision, weakness, fatigue, palpitations, chest pain, and tremulousness are associated with orthostatic intolerance.

Other co-morbid conditions associated with POTS are not clearly attributable to orthostatic intolerance. These include chronic headache, fibromyalgia, functional gastrointestinal or bladder disorders, cognitive impairment, and sleep disturbances.

Dermatological manifestations of POTS are also common and wide ranging, from livedo reticularis to Raynaud’s phenomenon, from cutaneous flushing to erythromelalgia. Here, we provide three illustrative cases of POTS with dermatological manifestations. We discuss the potential pathophysiology underlying such dermatological manifestations, and how such mechanisms could in turn help guide development of management.

The Dermatological Manifestations of Postural Tachycardia Syndrome: A review with illustrated Cases, H Huang, AD Hohler in Am J Clin Dermatol. 2015 Aug 5. [Epub ahead of print]

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Severe ME day Saturday 8 August 2015

WAMES invites you to join with them and the 25% ME Group to raise awareness of the home care needs of people with severe ME. Many severely affected people in Wales struggle to help professionals understand the extent of their need for nursing and social care in the home. Share our Facebook and twitter posts with others or download the photos (right click on photo and select save photo as):

Not sick enough forNot sick enough for

 

 

 

 

 

 

Trapped by ME hands Trapped by ME hands Trapped by ME face

Trapped by ME face   We don't expect...

 

 

We don’t expect to be disbelieved

 

 

Home care is the theme for Severe ME Day on August 8th, by Helen Brownlie in Phoenix Rising, 6 Aug 2015

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BACME publishes new guide to CFS

The British Association for Chronic Fatigue Syndrome/ME (BACME) have produced: “a practical clinical treatment summary, incorporating existing tools and methodologies”.

“Our aims were to bring together specialists from different services/professions who work with adults and children who have CFS/ME, and to develop a consensus approach to broader treatment. This includes existing documents, e.g. CBT competencies, NICE guidance, and PACE trial findings, together with new content, e.g. medications for symptom management. The approach has been based on clinician expertise, patient experience and the best available evidence, and is free to download: BACME Guide: Therapy and Symptom Management in CFS/ME

This document discusses drugs and CBT but does not include pacing as a management approach.

ME Association comment: Specialist NHS professionals launch new therapy and management guide for CFS/ME

 

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NHS Wales ME services development plan

The ME-CFS & FM Implementation Group, chaired by Prof Jonathan Richards (Cwm Taf Locality Clinical Director), has met twice during the first half of 2015.

This Group gives Health Boards (HBs) a chance to share experiences and encourage each other in implementing the recommendations of the Government’s Task & Finish Group Report. Patients are represented by Jan Russell for ME and Carol Ross for FM.

2015 goals for each Health Board:

  • appoint an executive lead to oversee service development & be an advocate at Board level
  • appoint a clinical lead/s to implement Report recommendations
  • identify HB healthcare ‘speciality’ with responsibility
  • develop a 3 year action plan
  • begin to hold stakeholder group meetings

Each Health Board has now named at least one person to represent them at the meeting. Some HBs’ plans are well under way and others will be working hard to develop theirs before the next meeting in November.

It is not the job of the Implementation Group to make decisions about illness names, diagnostic criteria, causes and treatments of ME and FM, etc. It doesn’t discuss medical issues but strategy and planning issues.

The Government’s Task & Finish Report recommendations

“focus on strengthening implementation arrangements and improving patient voice in the system. In making its recommendations, the Task and Finish Group has sought to identify the infrastructure required to support system change.”

Task & Finish Group Report

More information in the next issue of me voice, due out mid August 2015.

 

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