Opposition to Oxford NHS Trust leaflet which confuses post Covid-19 fatigue with ME/CFS

Posted on 04/20/2020 by wames

The ME community requests Oxford NHS Trust leaflet be withdrawn

 

A collection of physicians, physiotherapists MPs and patient charities have written to Oxford Health NHS Foundation Trust to object to the content of a leaflet by their Psychosocial Response Group entitled Coping with the Coronavirus. It is one of a series of leaflets about Coronavirus and mental health, and has been adopted by other English NHS Trusts. (WAMES sincerely hopes no Welsh Trusts adopt it!)

“We, the undersigned, request immediate withdrawal of the Oxford Health NHS Foundation Trust leaflet “Coping with Coronavirus: Fatigue” for the following reasons:

  • The leaflet conflates post viral fatigue with myalgic encephalomyelitis (“ME”)
  • The leaflet purports to provide information for post-COVID-19 rehabilitation but is predominantly comprised of rehabilitation advice for ME / CFS
  • The information provided is incorrect or misleading
  • The advice provided is potentially detrimental to patients and may result in deterioration and exacerbation of disability”

The Oxford leaflet says this about recovering from Covid-19:

“Most of us will make a full recovery, but if you are still not back to your usual levels of energy, and you feel very tired and low, four months or more after you had the virus (or three months in children), then you may have post-viral fatigue.

Some people may go on to develop Chronic Fatigue Syndrome (CFS), sometimes also called Myalgic Encephalitis (ME), which is a condition which affects people in different ways. The main symptom is persistent fatigue (tiredness) and exhaustion which can be severe and disabling.”

It goes on to advise people not to rest too much and to avoid a ‘boom & bust’ approach to activity. The treatment for this? Pacing, activity management and Graded Exercise Therapy, and Cognitive Behavioural Therapy!

NB   The leaflet has now been removed from the Oxford site but is still online at another Trust site.

Why are patients and health professionals objecting?

The letter of objection asks for the withdrawal of the leaflet and offers an alternative, as soon as it is available, which would recommend:

“The emphasis should be on management of post Covid-19 fatigue and preventing the development of ME/CFS. This comes from effective management of post viral fatigue, in the form of paced activity, adequate sleep and nutrition. Inappropriate management may result in development of ME and reduces the likelihood of people being able to return to work36.

The recommended treatments of CBT and GET do not improve employment and illness benefit status. As a matter of fact, a systematic review of available data found that after CBT and GET more patients were unable to work and more were receiving illness benefits.

In brief, patients are advised to practice pacing techniques, which are a primary tool for managing energy and avoiding post exertional malaise. While some pacing guidance advocates a “quota-contingent” approach (undertaking activities according to an amount/distance/goal with the aim of improving function) for someone with ME, or recovering from a viral infection, this will ultimately push them beyond their limits and cause a symptom exacerbation and subsequent decline in abilities.”

Read the full letter 

Trial By Error: Oxford-NHS Recommends GET/CBT for Post-COVID “CFS” Patients

Dr David Tuller, a senior fellow in Public Health in Journalism at the University of Berkeley in the USA, and long time opponent of the discredited PACE trial, has announced his intention to challenge the Trust:

“I mean, really. Isn’t this 2020? The notion that there are “thoughts and beliefs” that “maintain” patients in a state of illness should have been discarded with the failure of PACE. I plan to ask the Oxford Health NHS Foundation Trust for references for the (mis)information provided in the pamphlet. I will also ask about  the role of the agency’s “psychosocial support group.”

Prof Tuller reports he has file a FOI request to find out more about the Psychosocial Response Group

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MCP-1 is increased in patients with CFS & FM, whilst several other immune markers are significantly lower than healthy controls

Posted on 04/20/2020 by wames

MCP-1 is increased in patients with CFS and FM, whilst several other immune markers are significantly lower than healthy controls, by Nina Groven, Egil Andreas Fors, Astrid Kamilla Stunes, Solveig Klæbo Reitan in Brain, Behavior, & Immunity – Health Vol 4, April 2020 [doi.org/10.1016/j.bbih.2020.100067]

 

Highlights:

  • MCP-1 is significantly increased in CFS and Fibromyalgia compared to controls.
  • CFS and Fibromyalgia share common features of inflammation.
  • Decreased IL-1β, IL-4, IL-6, TNF-α, TGF-β1, TGF-β2, TGF-β3, IL-10 and IL-17A are found in both CFS and Fibromyalgia.

Abstract:

The role of the immune system in the pathogenesis of Fibromyalgia (FM) and Chronic fatigue syndrome (CFS) is not clear. We have previously reported increased levels of C-reactive protein (CRP) in these patient groups compared to healthy controls and wanted to further explore the levels of circulating immune markers in these populations.

The population consisted of three groups, 58 patients with FM, 49 with CFS and 54 healthy controls. All participants were females aged 18–60. Patients were recruited from a specialised university hospital clinic and controls were recruited by advertisement among the staff and students at the hospital and university.

Plasma levels of Interferon (IFN)-γ, Interleukin (IL)-1β, IL-1ra, IL-4, IL-6, IL-8, IL-10, IL-17, Interferon gamma-induced protein (IP)-10, Monocyte Chemoattractant Protein (MCP)-1, Transforming Growth Factor (TGF)-β1, TGF-β2, TGF-β3 and Tumour Necrosis Factor (TNF)-α were analysed by multiplex. Differences between the three groups CFS, FM and controls, were analysed by Kruskal Wallis tests.

MCP-1 was significantly increased in both patient groups compared to healthy controls. IL-1β, Il-4, IL-6, TNF-α, TGF-β1, TGF-β2, TGF-β3, IL-10 and IL17 all were significantly lower in the patient groups than healthy controls. IFN-γ was significantly lower in the FM group. For IL-8, IL-10 and IL-1ra there were no significant difference when controlled for multiple testing.

In conclusion, in our material MCP-1 seems to be increased in patients both with CFS and with FM, while several other immune markers are significantly lower in patients than controls.

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A unifying hypothesis of the pathophysiology of ME/CFS: recognitions from the finding of autoantibodies against ß2-adrenergic receptors

Posted on 04/17/2020 by wames

A unifying hypothesis of the pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): recognitions from the finding of autoantibodies against ß2-adrenergic receptors, by Klaus Wirth, Carmen Scheibenbogen in Autoimmunity Reviews, online 1 April 2020 [doi.org/10.1016/j.autrev.2020.102527]

 

Research abstract:

Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (CFS/ME) is a complex and severely disabling disease with a prevalence of 0.3% and no approved treatment and therefore a very high medical need. Following an infectious onset patients suffer from severe central and muscle fatigue, chronic pain, cognitive impairment, and immune and autonomic dysfunction. Although the etiology of CFS/ME is not solved yet, there is numerous evidence for an autoantibody mediated dysregulation of the immune and autonomic nervous system.

We found elevated ß2 adrenergic receptor (ß2AdR) and M3 acetylcholine receptor antibodies in a subset of CFS/ME patients. As both ß2AdR and M3 acetylcholine receptor are important vasodilators, we would expect their functional disturbance to result in vasoconstriction and hypoxemia. An impaired circulation and oxygen supply could result in many symptoms of ME/CFS. There are consistent reports of vascular dysfunction in ME/CFS. Muscular and cerebral hypoperfusion has been shown in ME/CFS in various studies and correlated with fatigue. Metabolic changes in ME/CFS are also in line with a concept of hypoxia and ischemia.

Here we try to develop a unifying working concept for the complex pathomechanism of ME/CFS based on the presence of dysfunctional autoantibodies against ß2AdR and M3 acetylcholine receptor and extrapolate it to the pathophysiology of ME/CFS without an autoimmune pathogenesis.

 

Health rising: Hypothesis predicts major failure point in Chronic Fatigue Syndrome (ME/CFS)

Simmaron Research: The blood vessel crunch: a unifying hypothesis for ME/CFS

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CFS – what nurses need to know (US)

Posted on 04/15/2020 by wames

Chronic Fatigue Syndrome – what nurses need to know, by Marianne Bush BS, RN in Nursing April 2020, vol 50 no. 4 – pp50-54 [doi:10.1097/01.NURSE.0000657068.67389.47]

Author information: Marianne Bush is an RN contractor for a national wellness company.

 

Article abstract: 

Chronic fatigue syndrome (CFS) is a long-term, often misunderstood disorder that involves the nervous, immune, metabolic, endocrine, and digestive systems. This article describes the pathophysiology of CFS, signs and symptoms of CFS in adults, diagnostic criteria for CFS, and nursing considerations for patients with CFS.

Nursing considerations
Nurses caring for patients with CFS should keep these points in mind:

  • Patients may need additional assistance with activities of daily living and take more time to recover from surgery and other medical procedures as well as any kind of emotional or mental stress.
  • Nurses should monitor patients for orthostatic intolerance and intervene appropriately; for example, by including standby assist with ambulation in the nursing plan of care.
  • Given the lack of standardized conventional treatments, patients may use alternative practitioners and therapies. During medication reconciliation, nurses should specifically inquire about vitamins and other supplements to avoid potential interactions with prescribed medications.
  • Remember that many patients with CFS do not look sick and have no outward sign of illness. This does not mean they are not experiencing symptoms. In severe cases, they may be more functionally impaired than those with heart failure, multiple sclerosis, or end-stage renal disease. These patients must not be dismissed because they “look” healthy.
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The effect of ME/CFS severity on cellular bioenergetic function

Posted on 04/14/2020 by wames

The effect of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) severity on cellular bioenergetic function, by Cara Tomas, Joanna L Elson, Victoria Strassheim, Julia L Newton, Mark Walker in PLoS One vol 15, #4, e0231136, April 10, 2020

 

Research abstract:

Myalgic encephalomyelitis/ Chronic fatigue syndrome (ME/CFS) has been associated with abnormalities in mitochondrial function. In this study we have analysed previous bioenergetics data in peripheral blood mononuclear cells (PBMCs) using new techniques in order to further elucidate differences between ME/CFS and healthy control cohorts.

We stratified our ME/CFS cohort into two individual cohorts representing moderately and severely affected patients in order to determine if disease severity is associated with bioenergetic function in PBMCs.

Both  ME/CFS cohorts showed reduced mitochondrial function when compared to a healthy control cohort. This shows that disease severity does not correlate with mitochondrial function and even those with a moderate form of the disease show evidence of mitochondrial dysfunction.

Equations devised by another research group have enabled us to calculate ATP-linked respiration rates and glycolytic parameters. Parameters of glycolytic function were  calculated by taking into account respiratory acidification. This revealed severely affected ME/CFS patients to have higher rates of respiratory acidification and showed the importance of accounting for respiratory acidification when calculating parameters of glycolytic function. Analysis of previously published glycolysis data, after taking into account respiratory acidification, showed severely affected patients have reduced glycolysis compared to moderately affected patients and healthy controls. Rates of ATP-linked respiration were also calculated and shown to be lower in both ME/CFS cohorts.

This study shows that severely affected patients have mitochondrial and glycolytic impairments, which sets them apart from moderately affected patients who only have mitochondrial impairment. This may explain why these patients present with a more severe phenotype.

ME Research UK explains:

In this latest study, the authors reanalysed some of the findings from their previous work, separating the ME/CFS patients into two groups: moderately affected (housebound) and severely affected (bedbound)…

In their previous study, the authors had found no difference in glycolysis between controls and ME/CFS patients. However, by separating out the patients into the two groups by disease severity, we can now see that the most severely affected patients do actually appear to have reduced glycolysis levels, while moderately affected patients do not…

The study also highlights the importance of conducting research into the most severely affected ME/CFS patients, where possible…

Potential next steps would be to test these methods in other diseases with symptoms of severe fatigue, to determine if the findings are a result of the symptoms (fatigue) or the underlying disease (ME/CFS).

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Emotional awareness correlated with number of awakenings from polysomnography in patients with ME/CFS – a pilot study

Posted on 04/14/2020 by wames

Emotional awareness correlated with number of awakenings from polysomnography in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome—a pilot study, by Indre Bileviciute-Ljungar and Danielle Friberg in Front. Psychiatry, 26 March 2020 [https://doi.org/10.3389/fpsyt.2020.00222]

 

Research abstract:

Introduction:

Unrefreshing sleep is one of the diagnostic criteria in myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), which could be explained by sleep disorders, for example obstructive sleep apnea, reported in our previous study with polysomnography. Our previous findings also indicate difficulties in emotional regulation when measuring alexithymia by TAS-20 (Toronto Alexithymia Scale) and level of emotional awareness by LEAS (Level of Emotional Awareness Scale) in ME/CFS patients. However, the reasons for this are unknown. The purpose of this study was to investigate correlations between data from subjective emotional regulation and polysomnography.

Methods:

Twenty-three ME/CFS patients (5 men and 18 women) of mean age 43, and 30 matched healthy controls (9 males and 21 women) of mean age 45, filled in TAS-20, LEAS, and Hospital Depression and Anxiety Scale (HADS). A polysomnography was performed on patients but not on healthy controls. Thus, values of normal population were used for sleep evaluation in ME/CFS patients.

Result:

There were significant differences between patients and controls in several aspects of emotional regulation, for example LEAS-self and LEAS-total. Seventy percent of the patients had increased numbers of awakenings (shifts from any sleep stage to awake), 22% had obstructive sleep apneas, and 27% had periodic limb movements. Correlation analysis showed that number of awakenings significantly correlated with LEAS-self and LEAS-total, p < 0.01, respectively. There were no other significant correlations.

Conclusion:

This pilot study demonstrated significant correlations between reduced emotional awareness and number of awakenings in polysomnography. Future studies with larger cohorts need to be conducted.

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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.

Read full paper

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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

Read full paper

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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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