Living with CFS during lockdown and a global pandemic

Posted on 10/02/2020 by wames

Living with Chronic Fatigue Syndrome during lockdown and a global pandemic, by G Brewer, K Stratton in Fatigue: Biomedicine, Health & Behavior, 1 Oct 2020 [doi.org/10.1080/21641846.2020.1827503]

 

Research abstract:

Objective
Chronic Fatigue Syndrome, a condition characterised by extreme fatigue that is not explained by other medical conditions, places individuals at greater risk of COVID-19. The condition is also associated with a lack of social support and social isolation. These individuals may, therefore, have a unique experience of lockdown and the pandemic. The present study investigates the experiences of those with Chronic Fatigue Syndrome during the COVID-19 pandemic.

Design: 
In the present study, we identified fifty online forum (Reddit) posts, discussing the personal lived experience of Chronic Fatigue Syndrome during lockdown and the global pandemic. These posts were subject to inductive thematic analysis.

Results:
Four themes were extracted from the data. These were (i) Symptom Change, (ii) Social Interactions, (iii) Comparing Experiences, and (iv) Positive Consequences. Themes highlighted both positive and negative experiences of the COVID-19 pandemic. For example, whilst some people reported more severe symptoms, lockdown also provided more accessible opportunities to interact (i.e. online videocalls).

Conclusion:
Chronic Fatigue Syndrome influenced physical, psychological, and social experiences, with both positive and negative outcomes of the lockdown and pandemic apparent. Findings have the potential to support those with Chronic Fatigue Syndrome and those who experience post-COVID-19 fatigue.

 

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CFS in children population: current knowledge summary

Posted on 10/01/2020 by wames

Chronic Fatigue Syndrome in children population – current knowledge summary, by Monika Prylinska, Natalia Skierkowska, Weronika Topka, Małgorzata Kwiatkowska in Journal of Education, Health and Sport Vol 10, #9, 635-643, Sep 2020

 

Review abstract:

Chronic Fatigue Syndrome/Myalgic Encephalomyelits (CFS/ME) is a chronic disease with complex pathophysiology and unknown etiology. It occurs both in children and adolescents, as well as in adults, with equal frequency. The clinical course is characterized by progressive fatigue, a significant reduction in the body’s efficiency, lack of relief despite rest, and numerous accompanying symptoms. Pathognomonic symptom for PE is the increase in fatigue after physical or mental exertion and the persistence of these symptoms for several hours or days.

The basis for effective treatment is primarily non-pharmacological treatment, including determining the optimal balance between physical activity and rest, which is aimed at preventing post-workout fatigue. Pain, insomnia, IO, and other symptoms can be treated with medication.

So far, little research has been done on the diagnosis and treatment of this disease in children. This publication aims to summarize the knowledge currently available on the Chronic Fatigue Syndrome in children and adolescents.

Summary

Chronic Fatigue Syndrome is a serious, chronic disease that significantly impairs the
daily functioning of the patient and reduces his quality of life. Despite the increasing number of scientific publications in the field of Chronic Fatigue Syndrome, its etiology and causal treatment have still not been established. Most of the conducted research concerns the adult patient population, which leads to a glaring gap in knowledge about the clinical course, diagnosis and treatment of pediatric patients. This monograph summarizes the currently available knowledge about CFS in the developmental age population and highlights the areas that require further research and further explanation.

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How common are depression & anxiety in adolescents with CFS?

Posted on 09/30/2020 by wames

How common are depression and anxiety in adolescents with chronic fatigue syndrome (CFS) and how should we screen for these mental health co-morbidities? A clinical cohort study, by Maria E Loades, Rebecca Read, Lucie Smith, Nina T Higson-Sweeney, Amanda Laffan, Paul Stallard, David Kessler, Esther Crawley in European Child & Adolescent Psychiatry, 22 September 2020 [doi.org/10.1007/s00787-020-01646-w]

 

Research abstract:

Adolescents with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) appear to be more likely to experience anxiety and/or depression using Patient Reported Outcome Measures (PROMs). However, we do not know how accurate these are at detecting problems in this patient group given the primary symptom of fatigue.

We aimed to accurately determine the prevalence of anxiety/depression using gold-standard diagnostic interviews and evaluate the accuracy of PROMs measuring mood
disorders in this patient group. We conducted a cross-sectional epidemiological study in a specialist tertiary paediatric CFS/ME service, England. The participants were 164 12-18 year olds with clinician confirmed CFS/ME and their parents. The measures were a
semi-structured diagnostic interview, the Kiddie Schedule for Affective Disorders and Schizophrenia, K-SADS, and questionnaires (Revised Children’s Anxiety and Depression Scale, RCADS; Spence Children’s Anxiety Scale, SCAS; Hospital Anxiety and Depression Scale, HADS).

Parents completed the RCADS-P. 35% met the criteria for at least one common mental health problem. 20% had major depressive disorder, and 27% an anxiety disorder, with social anxiety and generalised anxiety being the most common. There was high co-morbidity, with 61% of those who were depressed also having at least one anxiety disorder. The questionnaires were moderately accurate (AUC>0.7) at detecting clinically significant
anxiety/depression, although only the RCADS-anxiety reached the predefined 0.8 sensitivity, 0.7 specificity target.

Mental health problems are particularly common amongst adolescents with CFS/ME. Most screening tools were not sufficiently accurate in detecting clinically significant anxiety and depression, so these should be used with care in combination with thorough psychological/psychiatric assessment.

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Using plasma autoantibodies of Central Nervous System proteins to distinguish veterans with Gulf War Illness from healthy & symptomatic controls

Posted on 09/24/2020 by wames

Using plasma autoantibodies of Central Nervous System proteins to distinguish veterans with Gulf War Illness from healthy and symptomatic controls, by Mohamed B Abou-Donia, Elizabeth S Lapadula, Maxine H Krengel, Emily Quinn, Jessica LeClair, Joseph Massaro, Lisa A Conboy, Efi Kokkotou, Maria Abreu, Nancy G Klimas, Daniel D Nguyen and Kimberly Sullivan in Brain Sci. 2020, 10(9), 610; [doi.org/10.3390/brainsci10090610]  5 September 2020

 

Research abstract:

For the past 30 years, there has been a lack of objective tools for diagnosing Gulf War Illness (GWI), which is largely characterized by central nervous system (CNS) symptoms emerging from 1991 Gulf War (GW) veterans. In a recent preliminary study, we reported the presence of autoantibodies against CNS proteins in the blood of veterans with GWI, suggesting a potential objective biomarker for the disorder.

Now, we report the results of a larger, confirmatory study of these objective biomarkers in 171 veterans with GWI compared to 60 healthy GW veteran controls and 85 symptomatic civilian controls (n = 50 myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and n = 35 irritable bowel syndrome (IBS)).

Specifically, we compared plasma markers of CNS autoantibodies for diagnostic characteristics of the four groups (GWI, GW controls, ME/CFS, IBS). For veterans with GWI, the results showed statistically increased levels of nine of the ten autoantibodies against neuronal “tubulin, neurofilament protein (NFP), Microtubule Associated Protein-2 (MAP-2), Microtubule Associated Protein-Tau (Tau), alpha synuclein (α-syn), calcium calmodulin kinase II (CaMKII)” and glial proteins “Glial Fibrillary Acidic Protein (GFAP), Myelin Associated Glycoprotein (MAG), Myelin Basic Protein (MBP), S100B” compared to healthy GW controls as well as civilians with ME/CFS and IBS.

Next, we summed all of the means of the CNS autoantibodies for each group into a new index score called the Neurodegeneration Index (NDI). The NDI was calculated for each tested group and showed veterans with GWI had statistically significantly higher NDI values than all three control groups. The present study confirmed the utility of the use of plasma autoantibodies for CNS proteins to distinguish among veterans with GWI and other healthy and symptomatic control groups.

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Characterization of post–exertional malaise in patients with ME/CFS

Posted on 09/20/2020 by wames

Characterization of post–exertional malaise in patients with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, by Barbara Stussman, Ashley Williams, Joseph Snow, Angelique Gavin, Remle Scott, Avindra Nath and Brian Walitt in Front. Neurol., 18 September 2020 [doi.org/10.3389/fneur.2020.01025]

 

Research abstract:

Background:

Myalgic encephalomyelitis/chronic fatigue syndrome is characterized by persistent and disabling fatigue, exercise intolerance, cognitive difficulty, and musculoskeletal/joint pain. Post–exertional malaise is a worsening of these symptoms after a physical or mental exertion and is considered a central feature of the illness. Scant observations in the available literature provide qualitative assessments of post–exertional malaise in patients with myalgic encephalomyelitis/ chronic fatigue syndrome. To enhance our understanding, a series of outpatient focus groups were convened.

Methods:

Nine focus groups totaling 43 patients who reported being diagnosed with myalgic encephalomyelitis/ chronic fatigue syndrome were held between November 2016 and August 2019. Focus groups queried post–exertional malaise in daily life and participants’ retrospective memory of post–exertional malaise that followed an exercise provocation with a cardiopulmonary exercise test. Data analysis followed the grounded theory method to systematically code and categorize the data to find meaningful patterns. A qualitative software package was used to move text into categories during data coding.

Results:

A wide range of symptoms were attributed to exertion both in daily lives and following cardiopulmonary exercise testing. While three core symptoms emerged (exhaustion, cognitive difficulties, and neuromuscular complaints), participants’ descriptions were notable for their unique individual variations. Of 18 participants who responded to questions centered around symptoms following a cardiopulmonary exercise test, 17 reported that symptoms started within 24 h and peaked in severity within 72 h following the cardiopulmonary exercise test. Patients described post–exertional malaise as interfering with their ability to lead a “normal” life.

Conclusion:

The experience of post–exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome varies greatly between individuals and leads to a diminished quality of life. myalgic encephalomyelitis/ chronic fatigue syndrome patients describe post–exertional malaise as all-encompassing with symptoms affecting every part of the body, difficult to predict or manage, and requiring complete bedrest to fully or partially recover. Given the extensive variability in patients, further research identifying subtypes of post–exertional malaise could lead to better targeted therapeutic options.

Excerpts from Results

Theme 1. PEM Was Triggered by Three Broad Categories of Events
We asked focus group participants to give examples of activities that caused them to have PEM. Notably, there were three broad categories of activities: physical activity, cognitive effort, and emotion precipitated, although there was overlap across the three groups. These categories included triggers such as household chores, social activities, errands outside of the home, physical exercise, cognitive activities, and emotional moments (Figure 1).

Theme 2. Effects of PEM Were Impacted by Baseline Pre-exertional Symptoms
When focus group participants were asked to describe PEM following exertion, many expressed the importance of understanding their “starting point” or “baseline.” Participants described the pliable nature of symptoms and how successive exertion can compound symptoms.

Theme 3. PEM Had a Wide Symptom Range With Few Differences Between Daily PEM and Following CPET, With Three Core Symptoms (Exhaustion, Cognitive Difficulties, and Neuromuscular Complaints)…

Theme 3a. Exhaustion
Participants explained that the exhaustion from PEM is different than what they experienced before having ME/CFS…

Theme 3b. Cognitive Difficulties
Cognitive difficulties were described as both difficulty thinking clearly/paying attention and difficulty speaking or finding words…

Theme 3c. Neuromuscular Complaints
Patients often complained of neuromuscular symptoms, which included muscle pain/aches and muscle weakness…

Theme 4. PEM Following CPET Was More Immediate and of Longer Duration Than PEM in Daily Life

Theme 5. The Manner of Onset of PEM Symptoms Varied
Separate from when PEM began (as shown in Figures 4, 5), we also determined whether participants perceived the onset of symptoms as sudden or gradual…

Theme 6. Complete Rest Was Necessary to Gain Any Relief in PEM Symptoms
When asked what could alleviate PEM symptoms, virtually every participant agreed that while in an episode of PEM, complete rest was absolutely necessary to reduce symptoms…

Theme 7. Planning and Moderation of Energy Expenditure Was Essential to Avoiding PEM
An interesting theme that emerged during focus group discussions centered around the steps taken by participants to manage activity levels in their daily lives to minimize the effects of PEM…

Theme 8. The Uncertainty and Debility of PEM Created Despair
…Participants talked at length about living with the unpredictability of PEM and having to adjust their lives to try to avoid severe PEM…

Conclusion
ME/CFS patients describe PEM as all-encompassing with symptoms affecting every part of the body, difficult to predict or manage, and requiring complete bedrest to fully or partially recover. Through in-depth focus group discussions, ME/CFS patients describe PEM as disruptive to living a self-described “normal” life, sometimes leading to hopelessness or despair. Given the extensive variability in PEM symptoms and timeframes for onset, peak, and recovery, further research identifying subtypes of PEM could lead to better targeted therapeutic options…

 

MECFSSkeptic blog post,  by Michiel Tack: Summary of the NIH’s exploration of post-exertional malaise

Press release: NIH study details self-reported experiences with post-exertional malaise in ME/CFS

Medical news: Researchers explore clinical and biological aspects of myalgic encephalomyelitis/ chronic fatigue syndrome

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An analysis of 2‐day cardiopulmonary exercise testing to assess unexplained fatigue

Posted on 09/18/2020 by wames

An analysis of 2‐day cardiopulmonary exercise testing to assess unexplained fatigue, by Jacob B Lindheimer, Thomas Alexander, Wei Qian, Jacquelyn C Klein‐Adams, Gudrun Lange, Benjamin H Natelson, Dane B Cook, Helene Z Hill, Michael J Falvo in Physiological Reports, Vol 8, Issue 17, Sep 2020 [doi.org/10.14814/phy2.14564]

 

Research abstract:

Two consecutive maximal cardiopulmonary exercise tests (CPETs) performed 24 hr apart (2‐day CPET protocol) are increasingly used to evaluate post‐exertional malaise (PEM) and related disability among individuals with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS).

This protocol may extend to other fatiguing illnesses with similar characteristics to ME/CFS; however, 2‐day CPET protocol reliability and minimum change required to be considered clinically meaningful (i.e., exceeding the standard error of the measure) are not well characterized.

To address this gap, we evaluated the 2‐day CPET protocol in Gulf War Illness (GWI) by quantifying repeatability of seven CPET parameters, establishing their thresholds of clinically significant change, and determining whether changes differed between veterans with GWI and controls. Excluding those not attaining peak effort criteria (n = 15), we calculated intraclass correlation coefficients (ICCs), the smallest real difference (SRD%), and repeated measures analysis of variance (RM‐ANOVA) at the ventilatory anaerobic threshold (VAT) and peak exercise in 15 veterans with GWI and eight controls.

ICC values at peak ranged from moderate to excellent for veterans with GWI (mean [range]; 0.84 [0.65 – 0.92]) and were reduced at the VAT (0.68 [0.37 – 0.78]). Across CPET variables, the SRD% at peak exercise for veterans with GWI (18.8 [8.8 – 28.8]) was generally lower than at the VAT (28.1 [9.5 – 34.8]). RM‐ANOVAs did not detect any significant group‐by‐time interactions (all p > .05).

The methods and findings reported here provide a framework for evaluating 2‐day CPET reliability, and reinforce the importance of carefully considering measurement error in the population of interest when interpreting findings.

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Mitochondria & immunity in CFS

Posted on 09/16/2020 by wames

Mitochondria and Immunity in Chronic Fatigue Syndrome, by G Anderson, Michael Maes in Prog Neuropsychopharmacol Biol Psychiatry 2020 May 26 [DOI:10.1016/j.pnpbp.2020.109976]

 

Review abstract:

It is widely accepted that the pathophysiology and treatment of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) could be considerably improved. The heterogeneity of ME/CFS and the confusion over its classification have undoubtedly contributed to this, although this would seem a consequence of the complexity of the array of ME/CFS presentations and high levels of diverse comorbidities.

This article reviews the biological underpinnings of ME/CFS presentations, including the interacting roles of the gut microbiome/permeability, endogenous opioidergic system, immune cell mitochondria, autonomic nervous system, microRNA-155, viral infection/re-awakening and leptin as well as melatonin and the circadian rhythm. This details not only relevant pathophysiological processes and treatment options, but also highlights future research directions.

Due to the complexity of interacting systems in ME/CFS pathophysiology, clarification as to its biological underpinnings is likely to considerably contribute to the understanding and treatment of other complex and poorly managed conditions, including fibromyalgia, depression, migraine, and dementia. The gut and immune cell mitochondria are proposed to be two important hubs that interact with the circadian rhythm in driving ME/CFS pathophysiology.

Read the full paper

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Postviral fatigue syndrome and creatine: a piece of the puzzle?

Posted on 09/15/2020 by wames

Postviral fatigue syndrome and creatine: a piece of the puzzle?, by Sergej M Ostojic in Nutritional Neuroscience pp. 1–2, 19 Aug 2020 [doi.org/10.1080/1028415X.2020.1809880]

 

Letter conclusion:

Creatine supplementation may recharge creatine stores (at least in the skeletal muscles) but this does not inevitably lead to better clinical features in all PFS (postviral fatigue syndrome) patients. It might help some patients to perform more physical work without negative consequences yet creatine is probably less effective to tackle general fatigue and/or nervous system-specific signs and symptoms of PFS. We are still short of information. Does supplemental creatine even  reach the brain in PFS, a major stumbling block for creatine delivery in clinical neurology.

The appropriate daily dose, dosing interval, and treatment duration, gender-specific pharmacokinetic and pharmacodynamic considerations, possible interactions with other disease-modifying agents, long-term side effects of creatine – all details missing for PFS patients.

Creatine supplementation, therefore, requires much more research credentials before being endorsed in PFS, with correcting creatine might be just a piece of solving the big jigsaw puzzle of metabolic turmoil in this baffling disease. Finally, to answer to a PFS patient’s question about creatine – play safe and wait for better evidence!

Read the full letter

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Physios for ME podcast: a case study of post viral fatigue/ long Covid/ chronic Covid 19

Posted on 09/11/2020 by wames

 

Podcast: Physios for ME present a case study of Post Viral Fatigue/Long Covid/Chronic Covid 19.

A conversation about key aspects of pacing, avoiding PEM and how a skilled physiotherapist can be of help. [31 mins]

 

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WAMES AGM 26th Sep 2020

Posted on 09/08/2020 by wames

Annual General Meeting of WAMES

 

The annual business meeting of the Welsh Association of ME & CFS Support will be held virtually to review past events and plan future activities. Covid-19 has changed our landscape and our future, so there will be lots to discuss!

This year we will be welcoming a new secretary and treasurer!

Please contact jan@wames.org.uk if you have anything to report to WAMES, or topics you wish us to discuss or more importantly, if you would like to join the team or volunteer in any way.  Let Jan know if you wish to attend.

 

When:

Saturday 26th September 2020 at  10.30am

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