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Research abstract:
Objective
How can it be that a disease as serious as CFS affecting such a large number of people could be so unknown to the general population? The answer given to this question is based on Pierre Bourdieu’s analyzes of symbolic violence.
Method
The ‘letters to the editor’ by CFS patients to three national Spanish newspapers were subjected to various qualitative and quantitative analyzes.
Results
Based on the qualitative analyzes and their theoretical interpretation, 13 mechanisms of symbolic violence were identified: non-recognition, institutionalized un-care, condescension, authorized imposition of illegitimate verdicts, delegitimization, disintegration, imposition of discourse, euphemization, silencing, invisibilization, isolation, uncommunication, and self-blaming.
Multiple Correspondence Analysis made it possible to identify that the structural mechanisms (non-recognition, disintegration) were combined with the most symbolic ones, which came to the forefront producing the observed effects of symbolic violence. The 13 clusters obtained in the Agglomerative Hierarchical Clustering confirmed this result.
In a previous post on the JOSPT Blog, we outlined the connection between postacute sequalae to novel coronavirus (long COVID) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) through their common clinical presentation: postexertional symptom exacerbation (PESE). PESE suggests the presence of abnormal physiological responses to exercise/activity. These physiological responses may be measured using cardiopulmonary exercise testing (CPET), which allows for careful characterization of cardiac, pulmonary, and metabolic functioning during exercise. We will review the characteristic findings on CPET in people with PESE.
Summary
This post reviewed evidence from systems-level physiology that indicates important differences in physiological responses to acute exercise between people with deconditioning compared to people with PESE. Clearly, PESE is not deconditioning. Rather, physiological changes may be related to autonomic dysfunction, as well as direct and indirect effects of pathogenic infection, such as the novel coronavirus infection in long COVID. Insights into the physiology of PESE may be used to evaluate and treat people with long COVID and ME/CFS, as well as shape future rehabilitation research and safe clinical practices.
Read Part 1: Postexertional Symptom Exacerbation is an Abnormal Response to Exercise/Activity
Read Part 3: “Energy System First Aid” for People With Post Exertional Symptom Exacerbation
Read Part 4: Heart Rate Monitoring to Manage Postexertional Symptom Exacerbation
Coronavirus disease 2019 (COVID-19), an infectious disease caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), has been the most impactful infectious disease in the 21st century. The SARS-CoV-2 pandemic significantly increased the number of patients and deaths worldwide. Long-course diseases related to COVID-19, which present with persistent reparatory distress or fatigue (so-called long COVID) have been reported in adult and pediatric patients since the latter half of 2020. Long-COVID is observed as a persistent symptom after the acute phase of the disease.1
Recent research suggested that it can present with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).2 We report a case of long COVID to contribute to the body of knowledge regarding this disease, which has not been well investigated in children.
A 14-year-old boy with well controlled asthma, controlled by a long-acting muscarinic antagonist, long-acting beta-agonist, and corticosteroid inhaler, was admitted to our hospital for severe fatigue and appetite loss. He suffered from COVID-19 diagnosed using reverse transcription polymerase chain reaction 90 days prior to hospitalization. He presented with a low-grade fever, mild cough, dysgeusia, and dysosmia. He was placed under quarantine in a hotel room for 6 days. His low-grade fever and mild cough resolved after 10 days, while the dysgeusia and dysosmia disappeared within a month.
He presented with gradually progressive upper limb muscle weakness, severe fatigue, and difficulty concentrating (so-called “brain fog”) 20 days before hospitalization (70 days after the onset of COVID-19). He was unable to commute to attend junior high school. Three days before hospitalization, the patient did not eat due to appetite loss. He received oral prednisolone (20 mg/day) and Kanpō medicine (Rikkun-shito and Hotyu-ekkito). However, his symptoms were not relieved, and the patient was hospitalized. At the time of hospitalization, he did not present with fever, dyspnea, or desaturation.
Physical examination revealed an upper limb strength of grade 4 on manual muscle testing, but the tendon reflexes or sensory/motor nerve abnormalities were not noted in the extremities. Blood tests revealed normal white blood cell and C-reactive protein levels. Epstein–Barr virus and human immunodeficiency virus antibodies and antinuclear antibodies were not detected. The 10 min standing test revealed an increase of 52 heartbeats after standing at an upright position (from 81 to 133 beats/min). The patient was diagnosed with postural orthostatic tachycardia syndrome (POTS). After the test, the patient complained of worsening fatigue, suggesting post-exertional malaise (PEM), a specific characteristic of ME/CFS. Based on the clinical course and physical examination, the patient was diagnosed with ME/CFS due to long-COVID.
Oral prednisolone was discontinued, while the Kanpō medicine was continued. The patient then developed alopecia. Meanwhile, his muscle weakness and fatigue were alleviated by activity restriction due to hospitalization. On the 14th day of admission, he was discharged because his appetite improved, and he was referred to a hospital that specifically tended to chronic fatigue syndrome patients. Neither brain imaging nor electroencephalography were performed throughout the patient’s hospitalization.
The National Institute for Health Research in England classified long-COVID into four categories, namely, post-ICU syndrome, long-term organ damage, post-viral syndrome, and an entirely novel syndrome.3 Myalgic encephalomyelitis/chronic fatigue syndrome is typical of post-viral syndromes in adults, and similar cases have also been reported in children.4 Females are more likely to suffer from the disease, but males could also be affected. The exacerbation of symptoms upon exertion is known as PEM; avoiding extensive work is the essential aspect of ME/CFS management.5
In this case, the patient’s muscle fatigue and weakness dramatically improved with activity restriction due to hospitalization. This strategy may be useful for treating the severe exacerbation of ME/CFS. Chronic fatigue syndrome is diagnosed based on the persistence of symptoms for more than 6 months.2 This implies that patients have to wait for 6 months to be diagnosed with ME/CFS. Thus, new diagnostic criteria, specifically for ME/CFS due to COVID, are required to allow early intervention.
Petracek et al. reported that POTS might be an early sign of COVID-induced ME/CFS,4 POTS is considered to be a viable diagnostic criterion. To prepare for a surge of pediatric ME/CFS, the diagnostic and treatment algorithm for the disease should be standardized, and physicians need to know about or recognize the disease.
Background
Orthostatic intolerance-OI is common in Myalgic Encephalomyelitis /Chronic Fatigue Syndrome -ME/CFS. We used a 10-min passive vertical lean test as orthostatic challenge-OC and measured changes in vitals and end tidal CO2 (eTCO2). An abnormal physiologic response to OC was identified in 60% of the 63 patients evaluated from one to three times over several years. Hypocapnia, either resting or induced by OC, was the most frequent abnormality, followed by postural orthostatic tachycardia.
Objective
Evaluate the physiologic response of patients with ME/CFS to a standardized OC.
Design
Respiratory and heart rate, blood pressure and eTCO2 were recorded twice at the end of 10-min supine rest and then every minute during the 10-min lean. Hypocapnia was eTCO2 ≤ 32 mmHg. Orthostatic tachycardia was heart rate increase ≥ 30 beats per minute compared with resting or ≥ 120 BPM. Orthostatic hypotension was decreased systolic pressure ≥ 20 mmHg from baseline. Tachypnea was respiratory rate of ≥ 20 breaths per minute—either supine or leaning. Questionnaire data on symptom severity, quality of life and mood were collected at visit #2.
Patients
63 consecutive patients fulfilling the 1994 case definition for CFS underwent lean testing at first visit and then annually at visit 2 (n = 48) and 3 (n = 29).
Measures
Supine hypocapnia; orthostatic tachycardia, hypocapnia or hypotension.
Results
The majority of ME/CFS patients (60.3%, 38/63) had an abnormality detected during a lean test at any visit (51%, 50% and 45% at visits 1, 2 and 3, respectively). Hypocapnia at rest or induced by OC was more common and more likely to persist than postural orthostatic tachycardia. Anxiety scores did not differ between those with and without hypocapnia.
Conclusions
The 10-min lean test is useful in evaluation of OI in patients with ME/CFS. The most frequent abnormality, hypocapnia, would be missed without capnography.
The advocacy group Doctors with ME surveyed users of Dr Muirhead’s online ME/CFS training course during 2021.
Results include:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating disease characterized by severe and persistent fatigue. Along with clinical studies showing endothelial dysfunction (ED) in a subset of ME/CFS patients, we have recently reported altered ED-related microRNAs in plasma from affected individuals. Inadequate nitric oxide (NO), mainly produced by the endothelial isoform of nitric oxide synthase (eNOS) in endothelial cells (ECs), is a major cause of ED.
Endothelial dysfunction is a type of non-obstructive coronary artery disease (CAD) in which there are no heart artery blockages, but the large blood vessels on the heart’s surface constrict (narrow) instead of dilating (opening). [Stanford]
In this study, we hypothesized that plasma from that cohort of ME/CFS patients induces eNOS-related ED in vitro. To test this, we cultured human umbilical vein endothelial cells (HUVECs) in the presence of either plasma from ME/CFS patients (ME/CFS-plasma, n = 11) or healthy controls (HC-plasma, n = 12). Then, we measured the NO production in the absence or presence of tyrosine kinase and G protein-coupled receptors agonists (TKRs and GPCRs, respectively), well-known to activate eNOS in ECs.
Our data show that HUVECs incubated with ME/CFS-plasma produced less NO either in the absence or presence of eNOS activators compared to ones in presence of HC-plasma.
Also, the NO production elicited by bradykinin, histamine, and acetylcholine (GPCRs agonists) was more affected than the one triggered by insulin (TKR agonist). Finally, inhibitory eNOS phosphorylation at Thr495 was higher in HUVECs treated with ME/CFS-plasma compared to the same treatment with HC-plasma.
In conclusion, this study in vitro shows a decreased NO production in HUVECs exposed to plasma from ME/CFS patients, suggesting an unreported role of eNOS in the pathophysiology of this disease.
In summary, we expect that our study can:
(1) Provide new perspectives to study endothelial function in ME/CFS.
(2) Improve the diagnosis and stratification of the subset of patients affected by endothelial dysfunction.
MEA Research Review: Altered Endothelial Function in ME/CFS Blood Plasma
ME Research UK: Decreased NO production in endothelial cells exposed to plasma from ME/CFS patients
Cure ME: Decreased NO production in endothelial cells exposed to plasma from ME/CFS patients
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is commonly associated with cognitive complaints. To bring out the neuropsychological symptomatology inherent to ME/CFS, we conducted a systematic review according to PRISMA and MOOSE guidelines of the literature through the analysis of 764 studies published between 1988 and 2019 by using PubMed Central website and Clarivate analytics platform.
We performed a meta-analysis to delineate an idea of the neuropsychological profile inherent in ME/CFS.
The clinical picture typically affects visuo-spatial immediate memory (g = − 0.55, p = 0.007), reading speed (g = − 0.82, p = 0.0001) and graphics gesture (g = − 0.59, p = 0.0001). Analysis also revealed difficulties in several processes inherent in episodic verbal memory (storage, retrieval, recognition) and visual memory (recovery) and a low efficiency in attentional abilities.
Executive functions seemed to be little or not affected and instrumental functions appeared constantly preserved. With regard to the complexity and heterogeneity of the cognitive phenotype, it turns out that determining a sound clinical picture of ME/CFS cognitive profile must go through a neuropsychological examination allowing a complete evaluation integrating the notion of agreement between the choice and the number of tests and the complexity intrinsic to the pathology.
| 1 | Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) commonly associates with cognitive complaints |
| 2 | Neuropsychological testing is required for appropriately descripting and quantifying the cognitive impairment in ME/CFS patients |
| 3 | ME/CFS-associated cognitive impairment typically affects visuo-spatial immediate memory, reaction time, reading speed and the speed of the graphic gesture; |
| 4 | Episodic verbal and visual memories and attentional abilities may be also impaired |
| 5 | Instrumental functions appear constantly preserved |
Health Minister Eluned Morgan announced the findings of an independent review into Long COVID healthcare in Wales on 8th February 2022 and promised continued support.
We want everyone with Long COVID to know that we haven’t forgotten you.
Following a £5 million investment in the Adferiad Long COVID programme in 2021 the Health Minister announced in a Press Briefing that 2,400 people have accessed the programme. 2,226 have used services, with only 3.5% being referred to secondary services. Only a very small number are children. The app has been downloaded over 10,000 times.
The ONS has reported that at least 60,000 people in Wales are suffering from some form of post COVID symptoms and the Health Minister acknowledged that some people during 2020, would have struggled to access support, but that the Welsh Government “can and will do better”.
Ms Morgan encouraged people with ongoing symptoms to contact their GP, who will make ‘a comprehensive assessment of their symptoms’, and provide ‘support and care which is tailored to their needs and symptoms, as close to home as possible.’
In addition, Wales is taking part in UK wide studies into Long COVID. Ms Morgan has set up a long COVID expert group ‘to consider the impact of the condition, treatment and referral methods’ and the COVID Evidence Centre has been established as part of Health and Care Research Wales. It will soon begin a Long COVID work programme to explore the specific needs in Wales.
What was missing from the Health Minister’s announcements was any understanding that:
WAMES is pleased that people with Long COVID are being acknowledged and offered some services less than 2 years after their post-viral illness was recognised.
WAMES will be asking the Welsh Government and NHS Wales for acknowledgement that the 13,500 plus people with post-viral ME/CFS in Wales should no longer be forgotten and also offered recognition, ‘comprehensive assessments’ and ‘support and care close to home’, even if it does come many years or even decades later than for those with Long COVID.
Welsh Parliament Plenary 08/02/2022: Statement by the Minister for Health and Social Services: Long COVID
Wales Online video: Health Minister Long Covid Press Briefing [Statement: 8 mins followed by Q&A]
Wales Online: Wales’ health minister promises to ‘do better’ in helping long Covid sufferers
Western Telegraph: Long Covid: Wales helps to treat and manage people’s needs
NHS Confederation: Long Covid care in Wales
ITV Wales: Long Covid: ‘I’m a shell of my former self’ says young woman among 60,000 living with syndrome
“One of the best quotes I’ve ever heard is that we’re flying the plane while we’re still building it, it’s massive in that sense, and we’re still waiting on all the evidence.
“We are hoping that in 12 to 24 months we will see a massive change in a patient’s condition with Long Covid, but certainly at the moment the jury is out on that one.” (Nicola Perry-Gower, pulmonary rehabilitation clinical lead at Swansea Bay UHB)
BBC News: Long Covid: ‘My shame over 18-month work absence’
SBUHB: Health Minister visits Swansea Bay’s long Covid services
Researchers from the Workwell Foundation in California offer guidance for physical therapists with understanding and identifying PESE in patients with long COVID, following extensive research with patients with ME.
What the Physical Therapist can do
Clinicians may ask evidence-based questions that may suggest PESE (TABLE). These questions may be used to direct clinical reasoning. They also can form the basis for collaborative treatment approaches that consider the patient’s perspective. Variability in PESE symptoms between patients/clients, during exercise/activity recovery, and according to disease staging reinforces there is no one-size-fits-all approach to working with patients who have PESE.
Identification of the patient/client’s top three symptoms, how much activity is necessary to provoke PESE, how long symptoms of PESE last, and how they change over time are critical to inform patient-centered approaches to PESE management.
Read Part 2: Physiological characteristics during acute exercise are abnormal in people with PostExertional Symptom Exacerbation
Read Part 3: “Energy System First Aid” for people with Post Exertional Symptom Exacerbation
Read Part 4: Heart Rate Monitoring to manage PostExertional Symptom Exacerbation
