Gravity-induced exercise intervention in an individual with CFS/ME & PTS: a case report

Posted on 04/10/2020 by wames

Gravity-induced exercise intervention in an individual with chronic fatigue syndrome/ myalgic encephalomyeltis and postural tachycardia syndrome: a case report, by Robert Ballantine, Victoria Strassheim, Julia Newton in International Journal of Therapy and Rehabilitation 2019 vol 26,#5

 

Abstract:

Background/Aims
Chronic fatigue syndrome/myalgic encephalomyeltis is a condition of complex nature, characterised by unexplained disabling fatigue and a combination of non-specific accompanying symptoms.

Individuals with chronic fatigue syndrome/myalgic encephalomyeltis frequently present
with debilitating orthostatic symptoms, which may fall under the umbrella of postural tachycardia syndrome. Postural tachycardia syndrome is underpinned by autonomic nervous system dysfunction. The gravitational deconditioning that occurs in those severely affected by chronic fatigue syndrome/myalgic encephalomyeltis alongside postural
tachycardia syndrome has been suggested as a key focus for interventions in this group.

This case report documents the evaluation and rationale behind a novel gravity-induced exercise intervention to improve the symptoms of a 44-year-old female severely affected by chronic fatigue syndrome/myalgic encephalomyeltis and postural tachycardia syndrome, who had been bedbound for 10-15 years.

Methods
An exercise intervention was designed to challenge and therefore improve key areas of autonomic nervous system regulation in the presence of gravity. It contained seven different exercises conducted once a month in a class over a 6-month period.

Results
Fatigue impact score, activity levels and heart rate upon standing, as detected by an active stand test, improved during the exercise intervention and at follow up.

Conclusions
Gravity-induced exercise intervention can have a positive effect on an individual severely affected by Chronic fatigue syndrome/myalgic encephalomyeltis alongside postural tachycardia syndrome.

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Chronic Fatigue Syndrome: progress & possibilities

Posted on 04/10/2020 by wames

Chronic Fatigue Syndrome: progress and possibilities, by Carolina X Sandler, Andrew R Lloyd in Medical Journal of Australia April 5, 2020

 

Review Summary

  • Chronic fatigue syndrome (CFS) is a prevalent condition affecting
    about one in 100 patients attending primary care.
  • There is no diagnostic test, validated biomarker, clear
    pathophysiology or curative treatment.
  • The core symptom of fatigue affects both physical and cognitive
    activities, and features a prolonged post‐activity exacerbation
    triggered by tasks previously achieved without difficulty.
  • Although several different diagnostic criteria are proposed, for
    clinical purposes only three elements are required: recognition of the
    typical fatigue; history and physical examination to exclude other
    medical or psychiatric conditions which may explain the symptoms; and a
    restricted set of laboratory investigations.
  • Studies of the underlying pathophysiology clearly implicate a range of
    different acute infections as a trigger for onset in a significant
    minority of cases, but no other medical or psychological factor has been
    reproducibly implicated.
  • There have been numerous small case-control studies seeking to
    identify the biological basis of the condition. These studies have
    largely resolved what the condition is not: ongoing infection,
    immunological disorder, endocrine disorder, primary sleep disorder, or
    simply attributable to a psychiatric condition.
  • A growing body of evidence suggests CFS arises from functional
    (non‐structural) changes in the brain, but of uncertain character and
    location. Further functional neuroimaging studies are needed.
  • There is clear evidence for a genetic contribution to CFS from family
    and twin studies, suggesting that a large scale genome‐wide association
    study is warranted.
  • Despite the many unknowns in relation to CFS, there is significant
    room for improvement in provision of the diagnosis and supportive care.
    This may be facilitated via clinician education.

Introduction

Chronic fatigue syndrome (CFS) is an enigmatic clinical entity which challenges patients, health care providers and researchers alike.1 The diagnosis is sometimes avoided by medical practitioners, leaving patients in diagnostic limbo andprone to non-evidence- based labels and potentially harmful treatments. This quandary reflects the lack of a diagnostic test, validated biomarker, clear pathophysiology or curative treatment.

We retrieved publications from MEDLINE, PsycINFO, EMBASE, Cochrane and PubMed databases from 1988 to 2019 to consider aspects of clinical decision making in the diagnosis, assessment of prognosis, and management of CFS; provide an update on understanding of CFS pathophysiology; and identify priorities for improved care of patients with CFS and for future research. This review focuses on adult populations, but the condition also affects children and adolescents (reviewed elsewhere).2

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Neural based assessment of mind wandering during a fatigue inducing motor task: is task failure due to fatigue or distraction?”

Posted on 04/08/2020 by wames

Neural based assessment of mind wandering during a fatigue inducing motor task: Is task failure due to fatigue or distraction? by Surbhi Hablani, Ciara Marie O’Higgins, Declan Walsh and Richard B Reilly in 9th International IEEE EMBS Conference on Neural Engineering (San Francisco, CA, USA) March 20 – 23 , 2019

 

Abstract:

This study developed a method for investigating mind wandering (MW) in a fatigue-inducing motor task. To develop research protocols to assess fatigue in clinical cohorts, it is important that participants perform the task at hand to the best of their ability and with their complete attention. Therefore, it is important to know if the participant fails in the task due to fatigue or lack of sustained attention as a result of MW.

Two cohorts of 12 healthy controls and Chronic Fatigue Syndrome (CFS) subjects performed a hand-grip fatigue-inducing motor task while EMG and EEG were simultaneously recorded. Frontal midline theta (FMT) and parietal alpha power were calculated throughout the task.

While no significant differences were obtained in the FMT power for both cohorts, significant differences in parietal alpha power for the healthy subjects across the task shows they may have experienced MW unlike CFS subjects, who had to put in consistent effort to sustain attention during the task, which could imply fewer MW events.

Assessing MW using EEG can serve as an objective marker for evaluating performance in a task and, for assessing the impact of fatigue on the ability to sustain attention.

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The development of a consistent Europe-wide approach to investigating the economic impact of ME/CFS

Posted on 04/08/2020 by wames

The Development of a Consistent Europe-Wide Approach to Investigating the Economic Impact of Myalgic Encephalomyelitis (ME/CFS): A Report from the European Network on ME/CFS (EUROMENE) by Derek FH Pheby, Diana Araja,  Uldis Berkis, Elenka Brenna, John Cullinan, Jean-Dominique de Korwin, Lara Gitto, Dyfrig Hughes, Rachael M Hunter, Dominic Trépel, X Wang-Steverding in Healthcare 31 March 2020

 

Abstract:

We have developed a Europe-wide approach to investigating the economic impact of ME/CFS, facilitating acquisition of information on the economic burden of ME/CFS, and international comparisons of economic costs between countries.

The economic burden of ME/CFS in Europe appears large, with productivity losses most significant, giving scope for substantial savings through effective prevention and treatment. However, economic studies of ME/CFS, including cost-of-illness analyses and economic evaluations of interventions, are problematic due to different, arbitrary case definitions, and unwillingness of doctors to diagnose it. We therefore lack accurate incidence and prevalence data, with no obvious way to estimate costs incurred by undiagnosed patients.

Other problems include, as for other conditions, difficulties estimating direct and indirect costs incurred by healthcare systems, patients and families, and heterogeneous healthcare systems and patterns of economic development across countries.

We have made recommendations, including use of the Fukuda (CDC-1994) case definition and Canadian Consensus Criteria (CCC), a pan-European common symptom checklist, and implementation of prevalence-based cost-of-illness studies in different countries using an agreed data list.

We recommend using purchasing power parities (PPP) to facilitate international comparisons, and EuroQol-5D as a generic measure of health status and multi-attribute utility instrument to inform future economic evaluations in ME/CFS.

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Systemic hyperalgesia in females with Gulf War Illness, CFS & FM

Posted on 04/07/2020 by wames

Systemic hyperalgesia in females with Gulf War Illness, Chronic Fatigue Syndrome and Fibromyalgia, by Amber A Surian, James N Baraniuk in Scientific Reports vol 10, no. 5751 (2020)

 

Research abstract:

Pain is a diagnostic criterion for Gulf War Illness (GWI), Chronic Fatigue Syndrome (CFS), and fibromyalgia (FM). The physical sign of systemic hyperalgesia (tenderness) was assessed in 920 women who were stratified by 2000 Kansas GWI, 1994 CFS, and 1990 FM criteria.

Pressure was applied by dolorimetry at 18 traditional tender points and the average pressure causing pain determined. GWI women were the most tender (2.9 ± 1.6 kg, mean ± SD, n = 70), followed by CFS/FM (3.1 ± 1.4 kg, n = 196), FM (3.9 ± 1.4 kg, n = 56), and CFS (5.8 ± 2.1 kg, n = 170) compared to controls (7.2 ± 2.4 kg, significantly highest by Mann-Whitney tests p < 0.0001, n = 428).

Receiver operating characteristics set pressure thresholds of 4.0 kg to define GWI and CFS/FM (specificity 0.85, sensitivities 0.80 and 0.83, respectively), 4.5 kg for FM, and 6.0 kg for CFS.

Pain, fatigue, quality of life, and CFS symptoms were equivalent for GWI, CFS/FM and CFS. Dolorimetry correlated with symptoms in GWI but not CFS or FM. Therefore, women with GWI, CFS and FM have systemic hyperalgesia compared to sedentary controls.

The physical sign of tenderness may complement the symptoms of the Kansas criteria as a diagnostic criterion for GWI females, and aid in the diagnosis of CFS. Molecular mechanisms of systemic hyperalgesia may provide new insights into the neuropathology and treatments of these nociceptive, interoceptive and fatiguing illnesses.

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The presence of overlapping quality of life symptoms in primary antibody deficiency (PAD) & CFS

Posted on 04/05/2020 by wames

The presence of overlapping quality of life symptoms in primary antibody deficiency (PAD) and chronic fatigue syndrome (CFS), by Rhea A Bansal, Susan Tadros, Amolak S Bansal in Allergy, Asthma & Clinical Immunology Vol 16, no: 21 (2020), March 30, 2020

Research abstract:

Background:
Fatigue, sleep disturbance and altered mood are frequently reported in patients with primary antibody deficiency syndrome (PADS) on adequate immunoglobulin replacement therapy. This study aimed to determine the frequency of symptoms compatible with chronic fatigue syndrome (CFS) in patients with PADS.

Methods:
The study involved the distribution of 682 self-completed postal questionnaires to ascertain the presence and frequency of symptoms compatible with CFS in patients with PADS. The reporting of symptoms for each patient were scored against the CFS diagnostic criteria used within our own South London Chronic Fatigue service.

Results:
The frequency of symptoms compatible with CFS were evident in 26 of the 188 patients (16.25%) returning adequately completed questionnaires. We considered a bias in the return of questionnaires amongst PADS patients with fatigue to be likely. As such we estimated the minimum frequency of CFS in patients with PADS to be 4% based on the 682 PAD patients to whom the questionnaire was distributed. This was significantly higher than the 0.5% estimate of the prevalence of CFS in the community in western populations. While the presence of significant fatigue correlated with the presence of anxiety and depression, there was no association with self-reported lung damage. Sleep disturbance affected 60% of the PAD patients returning satisfactory questionnaires and as expected the CFS score was higher in those with greater physical limitation.

Conclusions:
We conclude that patients with PADS have a high frequency of fatigue, low mood and anxiety. We suggest routine questioning for the symptoms of fatigue, disturbed sleep and altered mood in patients with PADS. The use of several treatment strategies in CFS may prove beneficial in improving the quality of life of patients with PAD.

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Video: ME & PEM (Post Exertional Malaise)

Posted on 04/02/2020 by wames

ME & PEM: English language video from Norway

 

This 3 minute film will give you an introduction to PEM (Post Exertional Malaise). Once you’ve understood what PEM is about, you’ll know a lot more about the debilitating chronic disease ME (Myalgic Encephalomyelitis).                     Published 2 April 2020

The film is made by the Norwegian ME Association (Rogaland County) with professional support from psychologist Ketil Jakobsen and paediatric neurologist Kristian Sommerfelt.

‘Fatigue is not the same as ME’

‘PEM is a long term worsening of symptoms that can be triggered by a relatively small exertion’

‘It is a common belief that everyone benefits from activity and effort, but this is not necessarily the case for patients with ME.’

‘The most important thing is to genuinely listen and believe what the patient is saying.’

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Covid-19 among ME/CFS patients: take part in a research study

Posted on 04/02/2020 by wames

Research on Covid-19 among ME/CFS patients

 

The European ME Alliance (EMEA) invites people to take part in a study to find out whether:

  • ME/CFS patients more often get infected with COVID-19 than other people?
  • people with ME/CFS have other and/or more or more severe symptoms than others?

Internist Dr. Joris Vernooij and Dr. Rogier Louwen of Erasmus University, Rotterdam in the Netherlands, have developed an online scientific research project in which ME/CFS patients with and without COVID-19 and a control group of people around the patients are urged to participate.

The ME/CFS Foundation Netherlands has invited all ME/CFS patient organisations in the Netherlands and in EMEA member countries to participate in the study.

The initiators of the project and all those involved in the research work are working completely pro bono.  Therefore, no costs will be incurred by participants.

It will involve short weekly online surveys.  You will need to register with Erasmus University and will need a mobile phone to receive a passcode.

Participate in the research

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Complex syndromes of chronic pain, fatigue & cognitive impairment linked to autoimmune dysautonomia and small fiber neuropathy

Posted on 04/02/2020 by wames

Complex syndromes of chronic pain, fatigue and cognitive impairment linked to autoimmune dysautonomia and small fiber neuropathy, by Yehuda Shoenfeld, Varvara A Ryabkova, Carmen Scheibenbogen, Louise Brinth, Manuel Martinez-Lavine, Shuichi Ikeda, Harald Heidecke, Abdulla Watad, Nicola L Bragazzi, Joab Chapman, Leonid P Churilov, Howard Amital in Clinical Immunology vol 214, May 2020 [https://doi.org/10.1016/j.clim.2020.108384]

 

Highlights

  • Autoimmune aspects of CFS, POTS, CRPS and SIIS are discussed.
  • The common denominators of anti-GPCR AAb and SFN are identified for these syndromes.
  • A new concept of autoimmune neurosensory dysautonomia is suggested.
  • Sjogren’s syndrome can illustrate the suggested concept.

 

Review abstract:

Chronic fatigue syndrome, postural orthostatic tachycardia syndrome, complex regional pain syndrome and silicone implant incompatibility syndrome are a subject of debate among clinicians and researchers. Both the pathogenesis and treatment of these disorders require further study.

In this paper we summarize the evidence regarding the role of autoimmunity in these four syndromes with respect to immunogenetics, autoimmune co-morbidities, alteration in immune cell subsets, production of autoantibodies and presentation in animal models.

These syndromes could be incorporated in a new concept of autoimmune neurosensory dysautonomia with the common denominators of autoantibodies against G-protein coupled receptors and small fiber neuropathy. Sjogren’s syndrome, which is a classical autoimmune disease, could serve as a disease model, illustrating the concept.

Development of this concept aims to identify an apparently autoimmune subgroup of the disputable disorders, addressed in the review, which may most benefit from the immunotherapy.

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Human Leukocyte Antigen alleles associated with ME/CFS

Posted on 04/01/2020 by wames

Human Leukocyte Antigen alleles associated with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), by Asgeir Lande, Øystein Fluge, Elin B Strand, Siri T Flåm, Daysi D Sosa, Olav Mella, Torstein Egeland, Ola D Saugsta, Benedicte A Lie, Marte K Viken in Scientific Reports vol 10, no. 5267, 24 March 2020

 

Research abstract:

The etiology and pathogenesis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) are unknown, and autoimmunity is one of many proposed underlying mechanisms.  Human Leukocyte Antigen (HLA) associations are hallmarks of autoimmune disease, and have not been thoroughly investigated in a large ME/CFS patient cohort.

We performed high resolution HLA -A, -B, -C, -DRB1, -DQB1 and -DPB1 genotyping by next generation sequencing in 426 adult, Norwegian ME/CFS patients, diagnosed according to the Canadian Consensus Criteria. HLA associations were assessed by comparing to 4511 healthy and ethnically matched controls. Clinical information was collected through questionnaires completed by patients or relatives.

We discovered two independent HLA associations, tagged by the alleles HLA-C*07:04 (OR 2.1 [95% CI 1.4–3.1]) and HLA-DQB1*03:03 (OR 1.5 [95% CI 1.1–2.0]). These alleles were carried by 7.7% and 12.7% of ME/CFS patients, respectively. The proportion of individuals carrying one or both of these alleles was 19.2% in the patient group and 12.2% in the control group (OR 1.7 [95% CI 1.3–2.2], pnc = 0.00003).

ME/CFS is a complex disease, potentially with a substantial heterogeneity. We report novel HLA associations pointing toward the involvement of the immune system in ME/CFS pathogenesis.

Comment: The best evidence yet that immune system problems can cause ME/CFS?, by Simon McGrath

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