Functional status & well-being in people with ME/CFS compared with people with MS & healthy controls

Posted on 03/15/2018 by wames

Research abstract:

Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls, by Caroline C. Kingdon, Erinna W. Bowman, Hayley Curran, Luis Nacul, Eliana M. Lacerda in PharmacoEconomics Open 2018 pp 1-12  [Online: 13 March 2018]

Background:
People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) continue to struggle to have their condition recognised as disabling in the face of public and professional prejudice and discrimination.

Objective:
The aim of this study was to compare the functional status and well-being of people with well-characterised ME/CFS with people with multiple sclerosis (PWMS), as well as healthy controls (HCs).

Methods:
In this cross-sectional study, we used data collected as part of the UK ME/CFS Biobank to compare actual participant scores from the Medical Outcomes Survey Short Form-36 v2™ (SF-36v2™) between groups, as a proxy for impact of disability, and from a bespoke questionnaire seeking data on employment and income.

Results:
People with ME/CFS scored significantly lower than PWMS or HCs in almost all SF-36v2™ areas. Prominent were lower scores for people with ME/CFS in the Physical Component Summary and Role Physical and Social Function domains, while the smallest differences were seen in the Mental Health domain. Responses to the bespoke questionnaire indicated that people with ME/CFS in this study work fewer hours and have lower incomes compared with people in the other two groups.

Conclusions:
Using SF-36v2™ scores as a proxy, people with ME/CFS were measurably more disabled than PWMS or HCs in this study population. Furthermore, employment and income data are consistent with loss of functional status. These findings should encourage the health community to recognise the disabling effects of ME/CFS, to advocate for the needs of people with ME/CFS, and to investigate strategies to address the cost of the disease to both individuals and society.

Key Points for Decision Makers:

  • This study suggests that at a group level people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are more disabled than people affected by multiple sclerosis (MS), as measured by the SF-36v2™.
  • ME/CFS is associated with a reduction in time spent at work and lower income, compared with people affected by MS.
  • Further efforts should be made to identify and address the impact of ME/CFS to individuals and society.
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Treating patients suffering from (ME/CFS) with sodium dichloroacetate: a pilot trial

Posted on 03/14/2018 by wames

Research abstract:

Treating patients suffering from myalgic encephalopathy/chronic fatigue syndrome ME/CFS) with sodium dichloroacetate: An open-label, proof-of-principle pilot trial, by Frank Comhaire in Medical hypotheses May 2018 Vol 114, Pp 45–48

Twenty-two consecutive patients suffering from refractory myalgic encephalitis/chronic fatigue syndrome (ME/CFS) were treated with an innovative nutriceutical containing sodium dichloroacetate in a proof-of-principle, pilot, open-label prospective cohort trial.

Ten patients experienced significant improvement of their health condition with reduction to almost half of their score in the fatigue severity scale. In twelve patients treatment failed to exert any beneficial effect. In the latter patients several other diseases have commonly been revealed by extensive biological and imaging investigations.

These preliminary findings sustain the hypothetical role of mitochondrial hypo-metabolism due to inhibition of the activity of the pyruvate dehydrogenase in the pathogenesis of primary ME/CFS, and suggest a possible benefit of nutriceutical treatment by sodium dichloroacetate.

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Managing fatigue in postural tachycardia syndrome (PoTS): The Newcastle approach

Posted on 03/13/2018 by wames

Managing fatigue in postural tachycardia syndrome (PoTS): The Newcastle approach, Victoria Strassheim, Jenny Welford, Rob Ballantine, Julia L Newton in Auton Neurosci. 2018 Feb 22. pii: S1566-0702(17)30328-4 [Epub ahead of print]

Highlights:

  • Fatigue is a common symptom described by those with PoTS.
  • Chronic Fatigue Syndrome is often co-diagnosed with PoTS.
  • Management of fatigue in PoTS is best delivered as a multidisciplinary approach.

Research abstract:

Fatigue is a significant symptom that is frequently reported by those with postural tachycardia syndrome (PoTS). There are a variety of reasons why those with PoTS might experience fatigue and as a consequence an individualised approach to management is most appropriate.

In this chapter we will examine the prevalence of fatigue in those with PoTS, its overlap with conditions such as chronic fatigue syndrome and describe a clinical approach to the management of fatigue in those with PoTS.

Extract:

Managing fatigue
Managing fatigue is possible, but it is not easy. It takes commitment, persistence, trial and error with no immediate quick fix. There is no medication that will cure fatigue in general, or specifically in those with PoTS and a multi-disciplinary approach is needed to aid its management.

First, it is important to find a stable start point. In our fatigue clinic, in Newcastle UK (Hackett et al., 2016; Lambson et al., 2015) we frequently ask people to complete activity diaries and to grade whether their activities are high, medium or low, defining periods when they are resting or asleep. When people do this, they can often see patterns in their activity that highlight how they may be booming and busting, or pacing their activity appropriately.

The management booklet that we use in Newcastle is available via http://www.ncl.ac.uk/medicalsciences/research/centres/fatigue/, and the components of our multidisciplinary approach shown in Fig. 2.

When managing fatigue in PoTS patients, much of the advice that we use in our clinical practice is generic and some extrapolated from information available in the CFS literature (Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (Encephalopathy); Diagnosis and Management, NICE 2007). However, by understanding the mechanisms that might lead to symptoms in PoTS, exacerbations can be avoided in order to help find a stable base line from which to manage and improve.

We consider fatigue management as being a package of advice that we provide for PoTS patients, it is unlikely that one thing alone will make the difference people want, it is most likely that approaching management of fatigue from multiple perspectives will have the best result.

It is our group’s experience that once PoTS physiology improves, people with CFS/ME are then able to exercise, suggesting that it is the orthostatic intolerance keeping PoTS patients less active rather than an unwillingness to exercise in the first place.

Read the full article

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This is brain awareness week 12-16 March 2018

Posted on 03/13/2018 by wames

There are more than 350 different conditions of the brain and spine and together they affect more than 12 million people in the UK. #BrainAwarenessWeek

Over 13,000 people in Wales could have ME and over 240,000 in the UK.

Find out more about research into the ME brain:

WAMES booklet: The ME brain

Health rising articles

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Does the microbiome & virome contribute to ME/CFS?

Posted on 03/12/2018 by wames

Review abstract:

Does the microbiome and virome contribute to myalgic encephalomyelitis/chronic fatigue syndrome? by Fiona Newberry, Shen-Yuan Hsieh, Tom Wileman, Simon R. Carding in Clinical Science Vol 135, #5, pp 523-542 [Published online March 9, 2018]

Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) (ME/CFS) is a disabling and debilitating disease of unknown aetiology. It is a heterogeneous disease characterized by various inflammatory, immune, viral, neurological and endocrine symptoms.

Several microbiome studies have described alterations in the bacterial component of the microbiome (dysbiosis) consistent with a possible role in disease development.  However, in focusing on the bacterial components of the microbiome, these studies have neglected the viral constituent known as the virome.

Viruses, particularly those infecting bacteria (bacteriophages), have the potential to alter the function and structure of the microbiome via gene transfer and host lysis. Viral-induced microbiome changes can directly and indirectly influence host health and disease. The contribution of viruses towards disease pathogenesis is therefore an important area for research in ME/CFS. Recent advancements in sequencing technology and bioinformatics now allow more comprehensive and inclusive investigations of human microbiomes.

However, as the number of microbiome studies increases, the need for greater consistency in study design and analysis also increases. Comparisons between different ME/CFS microbiome studies are difficult because of differences in patient selection and diagnosis criteria, sample processing, genome sequencing and downstream bioinformatics analysis. It is therefore important that microbiome studies adopt robust, reproducible and consistent study design to enable more reliable and valid comparisons and conclusions to be made between studies.

This article provides a comprehensive review of the current evidence supporting microbiome alterations in ME/CFS patients. Additionally, the pitfalls and challenges associated with microbiome studies are discussed.

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Association of CFS with premature telomere attrition (& accelerated ageing)

Posted on 03/09/2018 by wames

Research abstract:

Association of chronic fatigue syndrome with premature telomere attrition, by Mangalathu S. Rajeevan, Janna Murray, Lisa Oakley, Jin-Mann S. Lin, Elizabeth R. Unger in Journal of Translational Medicine Vol 16, #1, p 44 [Published: 27 February 2018]

Background:

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a severely debilitating condition of unknown etiology. The symptoms and risk factors of ME/CFS share features of accelerated aging implicated in several diseases. Using telomere length as a marker, this study was performed to test the hypothesis that ME/CFS is associated with accelerated aging.

Methods:

Participant (n=639) data came from the follow-up time point of the Georgia CFS surveillance study. Using the 1994 CFS Research Case Definition with questionnaire-based subscale thresholds for fatigue, function, and symptoms, participants were classified into four illness groups: CFS if all criteria were met (n=64), CFS-X if CFS with exclusionary conditions (n=77), ISF (insufficient symptoms/fatigue) if only some criteria were met regardless of exclusionary conditions (n=302), and NF (non-fatigued) if no criteria and no exclusionary conditions (n=196).

Relative telomere length (T/S ratio) was measured using DNA from whole blood and real-time PCR. General linear models were used to estimate the association of illness groups or T/S ratio with demographics, biological measures and covariates with significance set at p<0.05.

Results:

The mean T/S ratio differed significantly by illness group (p=0.0017); the T/S ratios in CFS (0.90 p/m 0.03) and ISF (0.94 p/m 0.02) were each significantly lower than in NF (1.06 p/m 0.04). Differences in T/S ratio by illness groups remained significant after adjustment for covariates of age, sex, body mass index, waist-hip ratio, post-exertional malaise and education attainment.

Telomere length was shorter by 635, 254 and 424 base pairs in CFS, CFS-X and ISF, respectively, compared to NF. This shorter telomere length translates to roughly 10.1-20.5, 4.0-8.2 and 6.6-13.7 years of additional aging in CFS, CFS-X and ISF compared to NF respectively. Further, stratified analyses based on age and sex demonstrated that the association of ME/CFS with short telomeres is largely moderated by female subjects<45 years old.

Conclusions:

This study found a significant association of ME/CFS with premature telomere attrition that is largely moderated by female subjects<45 years old. Our results indicate that ME/CFS could be included in the list of conditions associated with accelerated aging. Further work is needed to evaluate the functional significance of accelerated aging in ME/CFS.

More info: The association of Chronic Fatigue Syndrome with premature telomere attrition

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UK CFS/ME Research Collaborative plans to promote biological research

Posted on 03/07/2018 by wames

Action for ME blog post, 6 March 2018: UK CFS/M.E. Research Collaborative

Since its inception in 2013, the UK CFS/M.E. Research Collaborative (CMRC) has successfully brought together significant numbers of researchers from across the UK and internationally with charities, mainstream funders and patients.

Aiming to drive interest and funding in CFS/ME research – which, as highlighted by the CMRC’s 2016 M.E./CFS Research Funding report, represents less than 1% of all active grants given by UK mainstream funding agencies – the CMRC has held four successful conferences, initiated and supported new collaborations, worked with mainstream funders and secured interest from pharma/industry, and brought researchers in from outside of the field as well as partners from charities covering overlapping illnesses.

Following a meeting of its Executive Board in February 2018, the CMRC agreed on a new purpose, objectives and values, which replace its previous Charter:

Our purpose

To promote the discovery of the biological mechanisms that underpin CFS/ME, which, together with clinical observation, will drive the development of targeted new treatments for this highly underserved patient population.

Our objectives

  • To design, implement and analyse the outcome of a cross-stakeholder, comprehensive, national research strategy for CFS/ME and experimental medicine.
  • To create an open cross-sector platform for effective knowledge-exchange and datasharing both nationally and internationally, in order to optimise research, raise awareness of the disease, and influence policymakers and investors.

Values

  •  We are an intellectually generous community sharing data, best practice and technologies.
  • We are a creative community harnessing new ideas, new technologies and new ways of working.
  • We are a collaborative community inviting all stakeholders to join our programmes and shape our activity.
  • We are an enabling community, facilitating the leverage of further resources for CFS/ME research.

Find out more

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Finally – an objective measure of fatigue?

Posted on 03/06/2018 by wames

Health Rising blog post by Cort Johnson, 20 Feb 2018: Finally – An Objective Measure of Fatigue? An ME/CFS and Fibromyalgia Inquiry

Making Fatigue Real
Fatigue is like the Rodney Dangerfield of symptoms – it just gets no respect. The problem is the poor descriptive power of the word. It readily describes the everyday, manageable fatigue that most of the population regularly feels. That fatigue, though, has little relation to the pathological, functionally debilitating “fatigue” that people with chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), multiple sclerosis and some other diseases experience.

Studies indicate that the “fatigue” in these can be remarkably debilitating. Tony Komaroff’s large 1996 study indicated that people with ME/CFS were significantly more functionally impaired than people with congestive heart failure, type II diabetes mellitus, acute myocardial infarction, multiple sclerosis and hypertension. (Note that very severely ill ME/CFS patients were surely not included in this study.)

Self-tests and questionnaires to assess fatigue abound but are hardly trusted. What we really need is a test that objectively measures how much fatigue is present. Finding that has seemed kind of like the holy grail – a much desired goal but always seemingly out of reach. How do you measure such a seemingly subjective issue as fatigue?

One way is to identify a physiological attribute that changes depending on how much fatigue is present. The Japanese propose that a parasympathetic nervous system “collapse” that occurs after exertion in ME/CFS patients allows them to measure the amount of post-exertional malaise present.

See Fatigue – The Japanese Way

Staci Stevens’s two-day exercise test certainly shows up the functional impairments caused by exercise in ME/CFS in spades but is expensive, takes two days to complete, and requires exercise. The two-day test is superb for proving disability and understanding the amount of activity an ME/CFS/FM patient’s system can handle. An ideal measure of fatigue that could be readily used in studies, though, would be non-invasive, cheap and easy to administer.

A cheap, easy-to-administer, non-invasive test which could be conducted using a wearable, no less, has actually been the focus of research lately.

The ramifications could be huge. Researchers could objectively determine if say, NK cell cytotoxicity or ATP output was actually correlated with increased fatigue. Or a clinical trial could determine more accurately how a drug or treatment protocol was affecting fatigue levels. Functional vs “non-functional” fatigue (depression?) could be identified.

The Eyes – A Window into Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM)

The eyes are turning out to provide a surprisingly effective window into fibromyalgia and chronic fatigue syndrome (ME/CFS).  Non-invasive methods have been used to detect small fiber neuropathy in the eyes of fibromyalgia patients.  Recently, researchers have been using computational eyeglasses to assess the association between fatigue and rapid eye movements called ‘saccades’.

Saccades refer to a quick, simultaneous movement of both eyes which occurs in a kind of jumping motion. These types of movements occur when our eyes scan their immediate environment or when we’re reading. (Could reduced eye movements be involved with the reading problems some ME/CFS/FM patients have?)

These movements occur very, very quickly but their speed, amplitude (distance traveled) and other factors can be measured.

The link between a decrease in rapid eye movements and fatigue was first seen in 1979. Since then, studies of healthy controls have consistently shown that reduced rapid eye movements are associated with fatigue and/or sleepiness.  A 2012 and 2017 study found that people with multiple sclerosis – a severely fatiguing disorder – displayed significantly reduced eye movement velocity, amplitude and latency during a fatiguing task, relative to healthy controls. The authors of the 2012 study concluded that:

Assessment of peak velocity, amplitude and latency in a saccade fatigue task is a promising approach for quantifying fatigue in MS patients.

The studies suggest that measuring rapid eye movements or saccades could provide a measure of fatigue-limited functionality; i.e. the inability of the eyes to scan their surroundings properly.

Side Note – Central Fatigue, Chronic Fatigue Syndrome, Caffeine and Dopamine….

On a side note, studies have shown that, at least in healthy humans, caffeine, when taken after exercise, can reduce or prevent the reduction in rapid eye movements seen. This suggests that the normal fatigue associated with exercise is at least partially caused by what’s called “central fatigue” – or fatigue produced by the brain.

Read more

 

 

 

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Onset patterns of CFS & ME

Posted on 03/06/2018 by wames

Research abstract:

Onset patterns of chronic fatigue syndrome and myalgic encephalomyelitis by Meredyth Anne Evans & Leonard A. Jason in Res Chron Dis (2018) 2(1), 001–0030

The onset of Chronic fatigue syndrome (CFS) and Myalgic Encephalomyelitis (ME) is  considered a key area of inquiry. Case criteria for ME and CFS and much of the academic literature suggest that patients typically experience one of two possible onset patterns: sudden or gradual.

The current study provided an in-depth investigation of ME and CFS onset in order to provide insight into early symptoms, onset duration, and the progression of functional disability. We collected qualitative descriptive data to gain a rich description of illness onset from the patients’ point of view.

Overall, qualitative findings revealed detailed descriptions of ME and CFS onset experiences. Major themes that emerged from the data included: onset/illness progression patterns, illness causes, methods of adapting and coping, hardworking and active lives prior to onset, healthy lives prior to onset, prior health problems, comorbid health conditions, emotional responses to onset, exertional effects, the illness as life limiting, stress, traumatic experiences, lack of support, support, and treatment limitations.

A closer examination of the onset/illness progression patterns that emerged from the data provided evidence that individuals with ME and CFS experience complex onset patterns. Furthermore, the study findings suggest that the method of categorizing individuals into sudden versus gradual onset groups fails to capture the more nuanced and varied onset experiences.

Prospective research studies that capture the onset period as it is developing could lead to improvements in the way we define and assess ME and CFS onset, and may also lead to methods for early detection, prevention, and individualized treatment approaches.

 

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