Unraveling the molecular determinants of manual therapy: an approach to integrative therapeutics for the treatment of FM &CFS

Posted on 09/19/2018 by wames

Unraveling the molecular determinants of manual therapy: an approach to integrative therapeutics for the treatment of Fibromyalgia and Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis, by José Andrés Espejo, María García-Escudero, andElisa Oltra in Open AccessInt. J. Mol. Sci. 2018, 19(9), 2673 [Published: 9 September 2018]

Review abstract:

Application of protocols without parameter standardization and appropriate controls has led manual therapy (MT) and other physiotherapy-based approaches to controversial outcomes.

Thus, there is an urgency to carefully define standard protocols that elevate physiotherapy treatments to rigorous scientific demands. One way in which this can be achieved is by studying gene expression and physiological changes that associate to particular, parameter-controlled, treatments in animal models, and translating this knowledge to properly designed, objective, quantitatively-monitored clinical trials (CTs).

Here, we propose a molecular physiotherapy approach (MPTA) requiring multidisciplinary teams, to uncover the scientific reasons behind the numerous reports that historically attribute health benefits to MT-treatments.

The review focuses on the identification of MT-induced physiological and molecular responses that could be used for the treatment of fibromyalgia (FM) and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). The systemic effects associated to mechanical-load responses are considered of particular relevance, as they suggest that defined, low-pain anatomic areas can be selected for MT treatment and yet yield overall benefits, an aspect that might result in it being essential to treat FM.

Additionally, MT can provide muscle conditioning to sedentary patients without demanding strenuous physical effort, which is particularly detrimental for CFS/ME patients, placing MT as a real option for integrative medicine programs to improve FM and CFS/ME.

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Videos: Prof Peter Rowe & Dr Nigel Speight, discuss paediatric ME/CFS

Posted on 09/18/2018 by wames

Paediatric ME/CFS (from Voices from shadows website) 

Two world renown ME/CFS paediatricians, Prof Peter Rowe and Dr Nigel Speight, discuss paediatric ME/CFS diagnosis and management in two short videos for medical professionals, following publication of the comprehensive manual Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer  published in Frontiers 2017.

Peter Rowe MD is a Professor of Paediatrics and is Director of the Children’s Center Chronic Fatigue Clinic at the Johns Hopkins University School of Medicine, Baltimore, USA. His areas of clinical expertise include chronic fatigue syndrome, fibromyalgia and orthostatic intolerance. Prof Peter Rowe played a  major role in the production of  the recent  Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer. He was also a member of the team which produced the very influential report: Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Published in 2015 by the National Academy of Medicine, USA, it includes diagnostic criteria, a clinicians guide and a comprehensive literature review.

Dr Nigel Speight is a  consultant Paediatrician with a long standing special interest in ME, based in Durham, UK. He is a medical advisor for several charities including the ME Association, The Young ME Sufferers Trust and the 25% ME Group. Dr Speight  was among the expert ME/CFS paediatricians contributing to Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer. He previously contributed to the “Myalgic Encephalomyelitis International Consensus Criteria” and it’s related “Primer’ for Medical Practitioners. 2011 He served on the Chief Medical Officer’s Working Party on ME 2002 and also the College of Paediatrics and Child Health Guidelines Group 2004.

Part 1. Diagnosis of paediatric ME/CFS with Dr Nigel Speight and Prof Peter Rowe

Part 2. Severe ME/CFS and management of paediatric  ME/CFS

Watch videos & find more links to resources

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Chinese CFS patients have alterations in their oral microbiome composition & function

Posted on 09/14/2018 by wames

Chronic fatigue syndrome patients have alterations in their oral microbiome composition and function by Taiwu Wang , Lei Yu , Cong Xu, Keli Pan, Minglu Mo, Mingxiang Duan, Yao Zhang , Hongyan Xiong  in PLoS One. 2018 Sep 11;13(9)

Research abstract:

Host-microbe interactions have been implicated in the pathogenesis of chronic fatigue syndrome (CFS), but whether the oral microbiome is altered in CFS patients is unknown.

We explored alterations of the oral microbiome in Chinese Han CFS patients using 16S rRNA gene sequencing and alterations in the functional potential of the oral microbiome using PICRUSt. We found that Shannon and Simpson diversity indices were not different in CFS patients compared to healthy controls, but the overall oral microbiome composition was different (MANOVA, p < 0.01).

CFS patients had a higher relative abundance of Fusobacteria compared with healthy controls. Further, the genera Leptotrichia, Prevotella, and Fusobacterium were enriched and Haemophilus, Veillonella, and Porphyromonas were depleted in CFS patients compared to healthy controls. Functional analysis from inferred metagenomes showed that bacterial genera altered in CFS patients were primarily associated with amino acid and energy metabolism.

Our findings demonstrate that the oral microbiome in CFS patients is different from healthy controls, and these differences lead to shifts in functional pathways with implications for CFS pathogenesis. These findings increase our understanding of the relationship between the oral microbiota and CFS, which will advance our understanding of CFS pathogenesis and may contribute to future improvements in treatment and diagnosis.

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Confirmatory factor analysis of a ME & CFS stigma scale

Posted on 09/13/2018 by wames

Confirmatory factor analysis of a myalgic encephalomyelitis and chronic fatigue syndrome stigma scale, by Julia M Terman, Jessica M Awsumb, Joseph Cotler, Leonard A Jason in Journal of Health Psychology, September 2018 [Published online: September 5, 2018]

Research abstract:
This study adapted a chronic illness stigma scale and explored its psychometric properties.

The main purposes were to confirm the factor structure of the instrument with this population and address the previous factor intercorrelation discrepancies.

Five hundred and fifty-four individuals with myalgic encephalomyelitis or chronic fatigue syndrome completed the adapted stigma scale. Results document the stigma experienced by an international sample of individuals with myalgic encephalomyelitis and chronic fatigue syndrome. Factors demonstrated good internal consistency, and a model fit was found in a confirmatory factor analysis.

Participants endorsed high levels of stigma, estrangement, and disclosure. Implications of these findings and future directions are discussed.

Read full article

Extract from conclusion:

In summary, the newly confirmed ME and CFS Stigma Scale demonstrated high levels of
stigma and related variables for people with the illness. Stigma may serve as a risk factor for a variety of social and health problems (Clement et al., 2015; Hutton et al., 2013; Looper and Kirmayer, 2004; Sehlo and Bahlas, 2013).

This article’s findings bring attention to the high levels of perceived stigma in ME and CFS.
Healthcare professionals, co-workers, friends, and family members need to work together to decrease the stigmatization of patients with ME and CFS. On a structural level, educational interventions can be implemented to decrease physician stigma. These interventions may involve seminars with factual information and videotaped cases, as such interventions have demonstrated effectiveness in improving attitudes toward ME and CFS (Friedberg et al., 2008).

Peer-led approaches may be most successful at combatting stigma, so interventions may emphasize the importance of participant research and bringing in guests with lived experience (Murman et al., 2014).

In addition to developing a consensus on the name and research case definition, which would reduce some of the ambiguity that professionals have with ME and CFS (Jason et al., 2018), there is also a need to develop treatment interventions that are not stigmatizing to patients, such as pacing and learning to stay within one’s energy envelope (Jason et al., 2013). On an interpersonal level, individuals can focus on active listening when people disclose challenges with ME and CFS. As demonstrated through the DPM, positive disclosure experiences may have profound effects in a patient’s future experiences.

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Using the internet to cope with CFS/ME in adolescence

Posted on 09/12/2018 by wames

Using the internet to cope with chronic fatigue syndrome/ myalgic encephalomyelitis in adolescence: a qualitative study, by Amberly Brigden, Julie Barnett, Roxanne Morin Parslow, Lucy Beasant, Esther Crawley in BMJ Paediatrics Open Vol. 2, #1 [Published: August 23, 2018]

Background:

Adolescents are increasingly using online resources for health purposes. Previous studies suggest that online provision of information about chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is neither balanced nor consistent with evidence-based practice. However, little is known about how adolescents with CFS/ME use the internet for
their condition and whether this is helpful or harmful.

Methods:
Nine indepth, semistructured, qualitative interviews were conducted with young people (aged 12-17) recruited from a specialist paediatric CFS/ME service. Interviews explored the types of online resources accessed, motivations for doing so and how resource use related to patterns of coping.

Results:
Around the time of diagnosis, participants focused on gathering facts about CFS/ME and therefore used official resources (eg, National Health Service sites) that were considered reliable. This transitioned to exploring patient-led and peer-led spaces: health forums, Facebook and YouTube. Participants accessed these regularly, over the long term, and
valued these sites for the personal stories, emotional content and interactive technology. Patient-led and peer-led sites supported coping, encouraging active behavioural management, providing social support and addressing stigmatised aspects of the condition. CFS/ME put a strain on normal adolescent life, such as identity and friendships.  Online resources allowed participants to adapt and maintain a sense of
normality.

Conclusions:
Adolescents who use the internet find online resources helpful in seeking information and social support for their condition. Healthcare services should improve their online resources to meet the needs of younger users, providing evidence-based content in ways that are relevant to adolescents and that can meet the needs for social support, as well as providing information.

What is already known on this topic?

  • Paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is relatively common and disabling, with significant impact on the individual, family and health services.
  • Adolescents are increasingly going online for health purposes. Online resources can be beneficial in  providing social support. However, disadvantages include  misleading or inaccurate medical information.
  • Previous studies suggest that online provision of information about CFS/ME is neither balanced nor consistent with evidence-based practice.

What this study hopes to add?

  • Participants initially focused on official resources (eg, National  Health  Service  sites) for fact-finding.  This  transitioned to patient/peer -led,  which were accessed regularly and over the long-term.
  • Patient-led/peer-led sites supported coping; they encouraged active behavioural management, provided social support, addressed stigmatised aspects of the condition and helped maintain normal adolescent life.
  • Feeling connected to other adolescents with the condition was important, and online forums addressed this need; accessing such forums complemented treatment with specialist CFS/ME services.
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Passive standing tests for the office diagnosis of postural tachycardia syndrome: New methodological considerations

Posted on 09/12/2018 by wames

Passive standing tests for the office diagnosis of postural tachycardia syndrome: new methodological considerations, by Maria Roma, Colleen L. Marden & Peter C. Rowe in Fatigue: Biomedicine, Health & Behavior 2018 [Published online: 25 Aug 2018]

Research abstract:

Background: Passive standing tests are a first-line, practical means of assessing individuals with chronic orthostatic symptoms.

Purpose: To identify the proportion reaching heart rate (HR) criteria for postural tachycardia syndrome (POTS) during a 10-minute passive standing test (PST) if measurement of the lowest supine HR incorporated a 2-minute period of post-test monitoring, rather than being restricted to the 5-minute pre-test values only, and to determine the proportion whose POTS would be missed by shorter periods upright.

Methods: Consecutive individuals ≥ 12 years from 2008 to 2017 who presented with chronic fatigue or lightheadedness and whose PST met criteria for POTS.

Results: Of the 93 enrolled (70% female, median age 17 years), the mean (SD) HR was higher in the 5 min supine before the 10 min upright than in the 2 min supine afterwards (67.6 [10.0] vs. 65.7 [10.9]; P = 0.01). Thirteen (14%; 95% CI, 7–21%) satisfied HR criteria for POTS using the supine HR from only the post-test period. The median time to reaching the HR criteria for POTS was 3 min. Of those reaching HR criteria, 53% (95% CI, 43–63%) would be missed by a 2-minute and 27% (95% CI, 19–37%) by a 5-minute test.

Interpretation: More adolescents and young adults are diagnosed with POTS during a 10-minute PST when the definition of their lowest supine HR includes a 2-minute post-test measurement along with the conventional pre-test measure. A full 10 min of standing is required to avoid underdiagnosing POTS in both clinical and epidemiologic studies.

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Operationalizing substantial reduction in functioning among young adults with CFS

Posted on 09/11/2018 by wames

Research abstract:

Operationalizing Substantial Reduction in Functioning Among Young Adults with Chronic Fatigue Syndrome, by Kristen D. Gleason, Jamie Stoothoff, Damani McClellan, Sttephanie McManimen, Taylor Thorpe, Ben Z. Katz, Leonard A. Jason in International Journal of Behavioral Medicine 2018 pp1-8 [Published online 5 June 2018]

Purpose:
Chronic fatigue syndrome and myalgic encephalomyelitis are fatiguing illnesses that often result in long-term impairment in daily functioning. In reviewing case definitions, Thrope et al. (Fatigue 4(3):175–188, 2016) noted that the vast majority of case definitions used to describe these illnesses list a “substantial reduction” in activities as a required feature for diagnosis. However, there is no consensus on how to best operationalize the criterion of substantial reduction.

operationalization is a process of defining the measurement of a phenomenon that is not directly measurable, though its existence is indicated by other phenomena. Operationalization is thus the process of defining a fuzzy concept so as to make it clearly distinguishable, measurable, and understandable in terms of empirical observations.                                     [Wikipedia]

Method:
The present study used a series of receiver operating curve (ROC) analyses to explore the use of the Medical Outcomes Study Short-Form-36 Health Survey (SF-36), designed by Ware and Shelbourne for operationalizing the substantial reduction criterion in a young adult population (18–29 years old). We compared the sensitivity and specificity of various cutoff scores for the SF-36 subscales and assessed their usefulness in discriminating between a group of young adults with a known diagnosis of chronic fatigue syndrome or myalgic encephalomyelitis (n = 98) versus those without that diagnosis (n = 272).

Results:
The four top performing subscales and their associated cutoffs were determined: Physical Functioning ≤ 80, General Health ≤ 47, Role Physical ≤ 25, and Social Functioning ≤ 50. Used in combination, these four cutoff scores were shown to reliably discriminate between the patients and controls in our sample of young adults.

Conclusion:
The implications of these findings for employing the substantial reduction criterion in both clinical and research settings are discussed.

Read full paper

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Myalgic Encephalomyelitis (ME) or what? An operational definition

Posted on 09/10/2018 by wames

Myalgic Encephalomyelitis (ME) or what? An operational definition, by Frank Twisk in Diagnostics 2018, 8(3), 64 [Published: 8 September 2018]

Article abstract: 
Myalgic encephalomyelitis (ME), identified as a new clinical entity with distinctive features in 1956, was originally considered as a neuromuscular disease. In 1988 the Centers for Disease Control and Prevention introduced the ill-defined concept of chronic fatigue syndrome (CFS). As predicted, CFS, unjustly considered to be a synonym for ME, pushed ME to the background.

To develop effective therapies for of ME and CFS, it is essential to investigate patients with ME specifically. For that reason, an operational definition of ME is indispensable. This article proposes an operational definition based on the most recent formal definitions and symptoms observed in ME. ME is a multi-systemic illness, which

(1) often has a sudden onset, in most cases a respiratory and/or gastro-intestinal infection, but a gradual or more dramatic onset is also possible;

(2) has an epidemic and an endemic form;

(3) has an unique clinical pattern deviating from other post-viral states;

(4) is distinguished by muscle fatigability/prolonged muscle weakness after trivial exertion;

(5) is accompanied by symptoms relating to neurological disturbance, especially of cognitive, autonomic, and sensory functions;

(6) can be accompanied by symptoms associated with cardiac and other systems;

(7) is characterized by fluctuation of symptoms (within and between “episodes”);

(8) has a prolonged relapsing course; and

(9) has a tendency to become chronic.

In conclusion, a discriminative definition for ME contains four mandatory elements:

(1) muscle fatigability/post-exertional muscle weakness lasting for days;

(2) operational criteria for “neurological disturbance, especially of cognitive, autonomic and sensory functions”;

(3) fluctuation of symptoms; and

(4) a prolonged relapsing course. This tentative definition of ME justifies the qualification “neuromuscular disease”.

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Cardiopulmonary exercise test methodology for assessing exertion intolerance in ME/CFS

Posted on 09/07/2018 by wames

Cardiopulmonary Exercise Test Methodology for Assessing Exertion Intolerance in ME/CFS by Staci Stevens, Chris Snell, Jared Stevens, Betsy Keller and J Mark VanNess in Frontiers in Pediatrics, 4 September 2018

Background:

Concise methodological directions for administration of serial cardiopulmonary exercise testing (CPET) are needed for testing of patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Maximal CPET is used to evaluate the coordinated metabolic, muscular, respiratory and cardiac contributions to energy production in patients with ME/CFS.

In this patient population, CPET also elicits a robust post-exertional symptom flare (termed, post-exertional malaise); a cardinal symptom of the disease. CPET measures are highly reliable and reproducible in both healthy and diseased populations. However, evidence to date indicates that ME/CFS patients are uniquely unable to reproduce CPET measures during a second test, despite giving maximal effort during both tests, due to the effects of PEM on energy production.

Methodology:

To document and assess functional impairment due to the effects of post-exertional malaise in ME/CFS, a 2-day CPET procedure (2-day CPET) has been used to first measure baseline functional capacity (CPET1) and provoke post-exertional malaise, then assess changes in CPET variables 24 h later with a second CPET to assess the effects of post-exertional malaise on functional capacity.

The second CPET measures changes in energy production and physiological function, objectively documenting the effects of post-exertional malaise. Use of CPET as a standardized stressor to induce post-exertional malaise and quantify impairment associated with post-exertional malaise has been employed to examine ME/CFS pathology in several studies.

This article discusses the results of those studies, as well as the standardized techniques and procedures for use of the 2-day CPET in ME/CFS patients, and potentially other fatiguing illnesses.

Conclusions:

Basic concepts of CPET are summarized, and special considerations for performing CPET on ME/CFS patients are detailed to ensure a valid outcome. The 2-day CPET methodology is outlined, and the utility of the procedure is discussed for assessment of functional capacity and exertion intolerance in ME/CFS.

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Responses in BMJ to Prof Sharpe on PACE trial

Posted on 09/05/2018 by wames

 Pressure grows on Lancet to review “flawed” PACE trial

On 22 August Ingrid Torjesen  wrote a news item in the British Medical Journal about an article in the Times which highlighted the call to review the results of the PACE trial into Graded Exercise Therapy and Cognitive Behavioural Therapy for CFS/ME.

Prof Michael Sharpe, one of the PACE trial researchers, responded supporting the trial: Re: Odd piece in Times newspaper about pressure on the Lancet to review unwelcome PACE trial findings

Science does not progress by campaigners trying to stop research being done or by suppressing its findings, simply because they are unwelcome. Science works best by testing ideas by doing experiments and then seeking either replication or refutation of the findings; the PACE trial findings have so far been replicated a number of times. We look forward to them being subject to further testing by other researchers in future.

Jonathan R Kerr, consultant in Microbiology at West sussex Hospital responded: We can specifically treat several infective CFS/ME subtypes

Jim Ellsworth: No difference at long term followup

Prof Jonathan CW Edwards: Inaccurate remarks by Professor Sharpe

Prof Jonathan CW Edwards: Re: Pressure grows on Lancet to review “flawed” PACE trial

The reason why I have signed the letter to The Lancet is that the PACE trial is methodologically so poor as to be uninterpretable.

Barbara Robinson: PACE proponents, straw men and bricks.

Nasim Marie Jafry: Re: Pressure grows on Lancet to review “flawed” PACE trial

In reality, many ME patients have been made worse by graded exercise, which is unsurprising as exertion intolerance is at the core of ME.

Dr Ellen CG Grant: Mitochondrial dysfunction in ME/CFS needs testing and treating Re: Pressure grows on Lancet to review “flawed” PACE trial

Andrew J Keeley: Please do not misunderstand patient views

Patients were angry that the results of the trial were excessively spun, and that much of the outcome measures specified in the protocol were not reported in the manuscript published in The Lancet. In particular, the thresholds for “positive outcome” and “recovery” were heavily watered down such that they were no longer meaningful.

Read all responses

 

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