Patients’ hopes for recovery from ME/CFS: toward a “recovery in” framework”

Posted on 01/11/2019 by wames

Patients’ hopes for recovery from myalgic encephalomyelitis and chronic fatigue syndrome: Toward a “recovery in” framework, by Andrew R Devendorf, Abigail A Brown, Leonard A Jason in Chronic Illness Vol 16, Issue 4, 2020 [First published 6 Dec 2018] doi.org/10.1177/1742395318815965

 

Research abstract:

Objective:

There is no consensus on recovery from myalgic encephalomyelitis and chronic fatigue syndrome, which has spawned debates when interpreting outcome research. Within these debates, the patient voice is often neglected. This study aimed to understand how patients conceptualize recovery – regarding the definition and possibility of recovery.

Method:

We conducted in-depth, semi-structured interviews with 10 older (above age 50) female patients with myalgic encephalomyelitis or chronic fatigue syndrome. Data were analyzed using a deductive thematic analysis.

Results:

Our sample viewed recovery as functioning without fear of relapse, returning to previous roles and identities, and achieving a sustained absence of symptoms. Participants expressed skepticism that reaching recovery from myalgic encephalomyelitis and chronic fatigue syndrome exists but working toward significant improvement through coping is a viable goal. Although many accepted they would never reclaim full functioning, participants continued to experience uncertainty about their future with unclear prognostic goals and limited treatment options.

Discussion:

Recovery is more than just symptom reduction. Outcome research should incorporate well-being measures like identity, meaning and quality of life, and personal empowerment to enhance recovery definitions. When communicating treatment goals, providers might convey cautious optimism for complete symptom remission, while emphasizing that living a fulfilling life through effective coping strategies is possible.

Read full paper

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Evidence of widespread metabolite abnormalities in ME/CFS: assessment with whole-brain magnetic resonance spectroscopy

Posted on 01/11/2019 by wames

Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy, by Christina Mueller, Joanne C Lin, Sulaiman Sheriff, Andrew A Maudsley, Jarred W. Younger in Brain Imaging and Behavior 2019: pp 1–11 [First Online: 07 January 2019]

 

Research abstract:

Previous neuroimaging studies have detected markers of neuroinflammation in patients with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). Magnetic Resonance Spectroscopy (MRS) is suitable for measuring brain metabolites linked to inflammation, but has only been applied to discrete regions of interest in ME/CFS.

We extended the MRS analysis of ME/CFS by capturing multi-voxel information across the entire brain. Additionally, we tested whether MRS-derived brain temperature is elevated in ME/CFS patients.

Fifteen women with ME/CFS and 15 age- and gender-matched healthy controls completed fatigue and mood symptom questionnaires and whole-brain echo-planar spectroscopic imaging (EPSI). Choline (CHO), myo-inositol (MI), lactate (LAC), and N-acetylaspartate (NAA) were quantified in 47 regions, expressed as ratios over creatine (CR), and compared between ME/CFS patients and controls using independent-samples t-tests. Brain
temperature was similarly tested between groups.

Significant between-group differences were detected in several regions, most notably elevated CHO/CR in the left anterior cingulate (p < 0.001). Metabolite ratios in seven regions were correlated with fatigue (p <0.05). ME/CFS patients had increased temperature in the right insula, putamen, frontal cortex, thalamus, and the cerebellum (all p < 0.05), which was not attributable to increased body temperature or differences in cerebral perfusion. Brain temperature increases converged with elevated LAC/CR in the right insula, right thalamus, and cerebellum (all p < 0.05).

We report metabolite and temperature abnormalities in ME/CFS patients in widely distributed regions. Our findings may indicate that ME/CFS involves neuroinflammation.

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“It’s not one size fits all”; the use of videoconferencing for delivering therapy in a Specialist Paediatric CFS Service

Posted on 01/10/2019 by wames

“It’s not one size fits all”; the use of videoconferencing for delivering therapy in a Specialist Paediatric Chronic Fatigue Service by Andrew Haig-Ferguson, Maria Loades, Charlotte Whittle, Rebecca Read, Nina Higson-Sweeney, Lucy Beasant, Jennifer Starbuck, Esther Crawley in Internet Interventions Volume 15, March 2019, Pages 43-51 [Available online 23 Dec 2018]

 

Research abstract:

Background:
There are few specialist paediatric Chronic Fatigue Syndrome (CFS/ME) services in the UK. Therefore, the distance some families have to travel to reach these services can be a barrier to accessing evidence-based treatment. Videoconferencing technology such as Skype provides a means of delivering sessions remotely. This study aimed to explore the views of children and young people, their parents, and healthcare professionals of treatment delivered by videoconferencing in a specialist paediatric CFS/ME team.

Method:
To explore the experiences of the participants, a qualitative design was selected. Twelve young people (age 9–18), and 6 parents were interviewed about their experience of treatment sessions delivered via videoconferencing within a specialist CFS/ME service. A focus group explored the views of healthcare professionals (N = 9) from the service. Thematic analysis was used.

Results:
Three themes were identified from the data: “Challenges and concerns”, “Benefits” and “Treatment provision”. Challenges and concerns that participants identified were; difficulties experienced with technology; a sense of a part of communication being lost with virtual connections; privacy issues with communicating online and feeling anxious on a screen. Participants felt that benefits of videoconferencing were; improving access to the chronic fatigue service; convenience and flexibility of treatment provision; a sense of being more open online and being in the comfort of their own home. In terms of treatment provision participants talked about videoconferencing as a part of a hierarchy of communication; the function of videoconferencing within the context of the chronic fatigue service; additional preparation needed to utilise videoconferencing and an assumption that videoconferencing is “part of young people’s lives”.

Conclusions:
Although the experience of sessions provided by videoconferencing was different to sessions attended in person, participants tended to be positive about videoconferencing as an alternative means of accessing treatment, despite some barriers. Videoconferencing could be an additional option within an individualised care plan, but should not be an alternative to face to face support.

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The link between idiopathic intracranial hypertension, FM, & CFS: exploration of a shared pathophysiology

Posted on 01/10/2019 by wames

The link between idiopathic intracranial hypertension, fibromyalgia, and chronic fatigue syndrome: exploration of a shared pathophysiology, by Mieke Hulens, Ricky Rasschaert, Greet Vansant, Ingeborg Stalmans, Frans Bruyninckx, Wim Dankaerts in Journal of Pain Research Vol 2018:11 Pages 3129—3140 [Published 10 December 2018]

 

Abstract:

Purpose: Idiopathic intracranial hypertension (IICH) is a condition characterized by raised intracranial pressure (ICP), and its diagnosis is established when the opening pressure measured during a lumbar puncture is elevated >20 cm H2O in nonobese patients or >25 cm H2O in obese patients. Papilledema is caused by forced filling of the optic nerve sheath with cerebrospinal fluid (CSF). Other common but underappreciated symptoms of IICH are neck pain, back pain, and radicular pain in the arms and legs resulting from associated increased spinal pressure and forced filling of the spinal nerves with CSF.

Widespread pain and also several other characteristics of IICH share notable similarities with characteristics of fibromyalgia (FM) and chronic fatigue syndrome (CFS), two overlapping chronic pain conditions. The aim of this review was to compare literature data regarding the characteristics of IICH, FM, and CFS and to link the shared data to an apparent underlying physiopathology, that is, increased ICP.

Methods: Data in the literature regarding these three conditions were compared and linked to the hypothesis of the shared underlying physiopathology of increased cerebrospinal pressure.

Results: The shared characteristics of IICH, FM, and CFS that can be caused by increased ICP include headaches, fatigue, cognitive impairment, loss of gray matter, involvement of cranial nerves, and overload of the lymphatic olfactory pathway. Increased pressure in the spinal canal and in peripheral nerve root sheaths causes widespread pain, weakness in the arms and legs, walking difficulties (ataxia), and bladder, bowel, and sphincter symptoms. Additionally, IICH, FM, and CFS are frequently associated with sympathetic overactivity symptoms and obesity. These conditions share a strong female predominance and are frequently associated with Ehlers-Danlos syndrome.

Conclusion: IICH, FM, and CFS share a large variety of symptoms that might all be explained by the same pathophysiology of increased cerebrospinal pressure.

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A systematic review of enteric dysbiosis in CFS/ME

Posted on 01/09/2019 by wames

A systematic review of enteric dysbiosis in chronic fatigue syndrome/myalgic encephalomyelitis, by S Du Preez, M Corbitt, H Cabanas, N Eaton, D Staines and S Marshall-Gradisnik in Systematic Reviews 2018 7:241 [Published: 20 December 2018]

Review abstract:

Background:
Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is an illness characterised by profound and pervasive fatigue in addition to a heterogeneous constellation of symptoms. The aetiology of this condition remains unknown; however, it has been previously suggested that enteric dysbiosis is implicated in the pathogenesis of CFS/ME.

This review examines the evidence currently available for the presence of abnormal microbial ecology in CFS/ME in comparison to healthy controls, with one exception being probiotic-supplemented CFS/ME patients, and whether the composition of the microbiome plays a role in symptom causation.

Methods:
EMBASE, Medline (via EBSCOhost), Pubmed and Scopus were systematically searched from 1994 to March 2018. All studies that investigated the gut microbiome composition of CFS/ME patients were initially included prior to the application of specific exclusion criteria. The association between these findings and patient-centred outcomes (fatigue, quality of life, gastrointestinal symptoms, psychological wellbeing) are also reported.

Results:
Seven studies that met the inclusion criteria were included in the review. The microbiome composition of CFS/ME patients was compared with healthy controls, with the exception of one study that compared to probiotic-supplemented CFS/ME patients. Differences were reported in each study; however, only three were considered statistically significant, and the findings across all studies were inconsistent. The quality of the studies included in this review scored between poor (< 54%), fair (54–72%) and good (94–100%) using the Downs and Black checklist.

Conclusions:
There is currently insufficient evidence for enteric dysbiosis playing a significant role in the pathomechanism of CFS/ME. Recommendations for future research in this field include the use of consistent criteria for the diagnosis of CFS/ME, reduction of confounding variables by controlling factors that influence microbiome composition prior to sample collection and including more severe cases of CFS/ME.

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Physical activity & sleep in CFS & FMS: associations with symptom severity in the general population cohort LifeLines

Posted on 01/07/2019 by wames

Physical activity and Sleep in Chronic Fatigue Syndrome and Fibromyalgia Syndrome: associations with symptom severity in the general population cohort LifeLines by Monica L Joustra, Wilma L Zijlema, Judith GM Rosmalen, and Karin AM Janssens in Pain Research and Management, Vol 2018 [Published 4 November 2018]

Research abstract:

Objective. The aim of the current study was to compare physical activity and sleep duration between patients with chronic fatigue syndrome (CFS), patients with fibromyalgia syndrome (FMS), and controls and to examine the association between physical activity level and sleep duration with symptom severity within these patient groups.

Methods. This study used data of LifeLines, a general population cohort in which 1.0% (63.7% female, age 44.9 (SD 11.6) years) reported CFS, 3.0% (; 91.6% female; age 48.4 (SD 10.7) years) reported FMS, and 95.7% (; 57.9% female; age 44.3 (SD 12.4) years) reported neither CFS nor FMS.

Physical activity, sleep duration, and symptom severity were assessed by questionnaires and analysed using ANCOVA and regression analyses, adjusted for age, sex, body mass index, smoking, and educational level.

Results. Patients with CFS and FMS had significantly lower physical activity scores (8834 ± 5967 and 8813 ± 5549 MET ∗ minutes) than controls (9541 ± 5533; ). Patients with CFS had the longest sleep duration (466 ± 86 minutes) compared to patients with FMS and controls (450 ± 67 and 446 ± 56; ). A linear association between physical activity, sleep duration, and symptom severity was only found in controls, in whom higher physical total activity scores and longer sleep duration were associated with a lower symptom severity.

In contrast, quadratic associations were found in all groups: both relatively low and high physical activity scores and relatively short and long sleep duration were associated with higher symptom severity in CFS, FMS, and controls.

Conclusion. This study indicates that patients with CFS or FMS sleep longer and are less physically active than controls on average. Both low and high levels of physical activity and short and long sleep duration are associated with higher symptom severity, suggesting the importance of patient-tailored treatment.

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Myalgic Encephalomyelitis or what? The International Consensus Criteria

Posted on 01/04/2019 by wames

Myalgic Encephalomyelitis or what? The International Consensus Criteria, by Frank Twisk in Diagnostics 2019, 9(1), 1 [Published: 20 December 2018] (This article belongs to the Special Issue Biomedical Insights that Inform the Diagnosis of ME/CFS)

Article abstract:
Myalgic encephalomyelitis (ME) is a neuromuscular disease with two distinctive types of symptoms (muscle fatigability or prolonged muscle weakness after minor exertion and symptoms related to neurological disturbance, especially of sensory, cognitive, and autonomic functions) and variable involvement of other bodily systems.

Chronic fatigue syndrome (CFS), introduced in 1988 and re-specified in 1994, is defined as (unexplained) chronic fatigue accompanied by at least four out of eight listed (ill-defined) symptoms.

Although ME and CFS are two distinct clinical entities (with partial overlap), CFS overshadowed ME for decades. In 2011, a panel of experts recommended abandoning the label CFS and its definition and proposed a new definition of ME: the International Consensus Criteria for ME (ME-ICC).

In addition to post-exertional neuroimmune exhaustion (PENE), a mandatory feature, a patient must experience at least three symptoms related to neurological impairments; at least three symptoms related to immune, gastro-intestinal, and genitourinary impairments; and at least one symptom related to energy production or transportation impairments to meet the diagnosis of ME-ICC.

A comparison between the original definition of ME and the ME-ICC shows that there are some crucial differences between ME and ME-ICC. Muscle fatigability, or long-lasting post-exertional muscle weakness, is the hallmark feature of ME, while this symptom is facultative for the diagnosis under the ME-ICC. PENE, an abstract notion that is very different from post-exertional muscle weakness, is the hallmark feature of the ME-ICC but is not required for the diagnosis of ME.

The diagnosis of ME requires only two type of symptoms (post-exertional muscle weakness and neurological dysfunction), but a patient has to experience at least eight symptoms to meet the diagnosis according to the ME-ICC. Autonomic, sensory, and cognitive dysfunction, mandatory for the diagnosis of ME, are not compulsory to meet the ME-ICC subcriteria for ‘neurological impairments’.

In conclusion, the diagnostic criteria for ME and of the ME-ICC define two different patient groups. Thus, the definitions of ME and ME-ICC are not interchangeable.

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Judy Turner aka author ‘Katie Flynn’ RIP

Posted on 01/03/2019 by wames

Judy Turner 1936-2019

It is with regret that we have heard of the death of Judy Turner from Wrexham, on 1 January 2019, aged 82.

Judy was a prolific and successful author, person with ME and long time supporter of the Clwyd ME support group.  She wrote historical and romantic fiction under the pseudonyms of Katie Flynn and Judith Saxton.

In 2013 Judy kindly contributed to an article in me voice, hoping to encourage other people affected by ME not to give up on their dream of writing.

We send our sympathy and best wishes to Judy’s husband Brian, daughter Holly and the rest of her family .

Daily Mail: Author Judy Turner… dies at 82 after selling eight million copies

BBC: Romantic fiction author Katie Flynn dies

Independent: Judy Turner dead

 

 

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Peak oxygen uptake in CFS/ME: a meta-analysis

Posted on 01/03/2019 by wames

Peak Oxygen Uptake in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Meta-Analysis by John D Franklin, Greg Atkinson, Janet M Atkinson, Alan M Batterham in International Journal of Sports Medicine, Dec 2018

Review abstract:

To evaluate the magnitude of the difference in VO2peak between patients with Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) and apparently healthy controls, 7 databases (Cochrane, PubMed, PsycINFO, Web of Knowledge, Embase, Scopus, Medline) were searched for articles published up to March 2018.

Search terms included ‘chronic fatigue syndrom*’AND (‘peak’ OR ‘maxim*’ OR ‘max’) AND (‘oxygen uptake’ OR ‘oxygen consumption’ OR ‘VO2peak’ or ‘VO2max’. Eligibility criteria were adults>18 y with clinically diagnosed CFS/ME, with VO2peak measured in a maximal test and compared against an apparently healthy control group.

The methodological quality of included studies was assessed using a modified Systematic Appraisal of Quality for Observational Research critical appraisal framework. A random effects meta-analysis was conducted on 32 cross-sectional studies (effects). Pooled mean VO2peak was 5.2 (95% CI: 3.8-6.6) ml.kg-1min-1 lower in CFS/ME patients vs. healthy controls. Between-study variability (Tau) was 3.4 (1.5-4.5) ml.kg-1min-1 indicating substantial heterogeneity. The 95% prediction interval was -1.9 to 12.2 ml.kg-1min-1.

The probability that the effect in a future study would be>the minimum clinically important difference of 1.1 ml.kg-1min-1 (in favour of controls) was 0.88 – likely to be clinically relevant.

Synthesis of the available evidence indicates that CFS/ME patients have a substantially reduced VO2peak compared to controls.

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Red blood cell deformability is diminished in patients with CFS

Posted on 01/02/2019 by wames

Red blood cell deformability is diminished in patients with Chronic Fatigue Syndrome, by Amit K Saha, Brendan R Schmidt, Julie Wilhelmy, Vy Nguyen, Justin Do, Vineeth C Suja, Mohsen Nemat-Gorgani, Ronald W Davis and Anand K Ramasubramanian in Clinical Hemorheology and Microcirculation, Pre-press, pp. 1-4, 28 Dec 2018, [Epub ahead of print]

Research abstract:

BACKGROUND: Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a poorly understood disease. Amongst others symptoms, the disease is associated with profound fatigue, cognitive dysfunction, sleep abnormalities, and other symptoms that are made worse by physical or mental exertion. While the etiology of the disease is still debated, evidence suggests oxidative damage to immune and hematological systems as one of the pathophysiological mechanisms of the disease. Since red blood cells (RBCs) are well-known scavengers of oxidative stress, and are critical in microvascular perfusion and tissue oxygenation, we hypothesized that RBC deformability is adversely affected in ME/CFS.

METHODS: We used a custom microfluidic platform and high-speed microscopy to assess the difference in deformability of RBCs obtained from ME/CFS patients and age-matched healthy controls.

RESULTS AND CONCLUSION: We observed from various measures of deformability that the RBCs isolated from ME/CFS patients were significantly stiffer than those from healthy controls. Our observations suggest that RBC transport through microcapillaries may explain, at least in part, the ME/CFS phenotype, and promises to be a novel first-pass diagnostic test.

One of the researchers Prof Ronald W. Davis comments on an earlier paper on this topic:

This paper documents that red blood cells are less deformable in ME/CFS patients compared to healthy controls. It potentially could be a biomarker, and we are proceeding to design new devices that will make a clear distinction between patients and healthy controls. These devices will be hand-held and easy to use by doctors in their offices, or in clinical testing labs.

Past work has looked primarily at the shape of red blood cells, which is difficult to quantitate. Our approach will give a clear quantitative number. It measures the ability of red blood cells to deform while squeezing into a capillary, something that blood cells must do for healthy flow. We measure hundreds of cells from each patient, so, because of this, even though the number of patients is low, we get a very statistically significant distinction between patient and healthy cells’ deformability. We are putting our energy into developing the new devices as soon as possible.

This critical study has been fully funded by Open Medicine Foundation (OMF) through the support of our generous donors.

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