Tag: waxing and waning symptoms

Conceptualising the episodic nature of disability among adults living with Long COVID: a qualitative study

Abstract:

Introduction: Our aim was to describe episodic nature of disability among adults living with Long COVID.

Methods: We conducted a community-engaged qualitative descriptive study involving online semistructured interviews and participant visual illustrations. We recruited participants via collaborator community organisations in Canada, Ireland, UK and USA. We recruited adults who self-identified as living with Long COVID with diversity in age, gender, race/ethnicity, sexual orientation and duration since initial COVID infection between December 2021 and May 2022. We used a semistructured interview guide to explore experiences of disability living with Long COVID, specifically health-related challenges and how they were experienced over time. We asked participants to draw their health trajectory and conducted a group-based content analysis.

Results: Among the 40 participants, the median age was 39 years (IQR: 32-49); majority were women (63%), white (73%), heterosexual (75%) and living with Long COVID for ≥1 year (83%). Participants described their disability experiences as episodic in nature, characterised by fluctuations in presence and severity of health-related challenges (disability) that may occur both within a day and over the long-term living with Long COVID. They described living with ‘ups and downs’, ‘flare-ups’ and ‘peaks’ followed by ‘crashes’, ‘troughs’ and ‘valleys’, likened to a ‘yo-yo’, ‘rolling hills’ and ‘rollercoaster ride’ with ‘relapsing/remitting’, ‘waxing/waning’, ‘fluctuations’ in health. Drawn illustrations demonstrated variety of trajectories across health dimensions, some more episodic than others. Uncertainty intersected with the episodic nature of disability, characterised as unpredictability of episodes, their length, severity and triggers, and process of long-term trajectory, which had implications on broader health.

Conclusion: Among this sample of adults living with Long COVID, experiences of disability were described as episodic, characterised by fluctuating health challenges, which may be unpredictable in nature. Results can help to better understand experiences of disability among adults living with Long COVID to inform healthcare and rehabilitation.

Source: O’Brien KK, Brown DA, McDuff K, St Clair-Sullivan N, Solomon P, Chan Carusone S, McCorkell L, Wei H, Goulding S, O’Hara M, Thomson C, Roche N, Stokes R, Vera JH, Erlandson KM, Bergin C, Robinson L, Cheung AM, Torres B, Avery L, Bannan C, Harding R. Conceptualising the episodic nature of disability among adults living with Long COVID: a qualitative study. BMJ Glob Health. 2023 Mar;8(3):e011276. doi: 10.1136/bmjgh-2022-011276. PMID: 36863719; PMCID: PMC9979585. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9979585/ (Full text)

Cardiac function fluctuates during exacerbation and remission in young adults with chronic fatigue syndrome and “small heart”

Abstract:

BACKGROUND: “Small heart syndrome”, previously referred to as so-called “neurocirculatory asthenia” associated with a small heart shadow on the chest roentgenogram, is characterized by weakness or fatigue even after mild exertion, palpitation, dyspnea, and fainting, many of which resemble symptoms in patients with chronic fatigue syndrome (CFS).

METHODS AND RESULTS: The study population comprised 42 patients with CFS younger than 40 years of age. Cardiothoracic ratio was determined on the chest roentgenogram and echocardiographic examination was performed to evaluate both the cardiac chamber size and function. “Small heart” (cardiothoracic ratio < or = 42%) on the chest X-ray photograph was noted in 26 (62%) of the study CFS patients. Echocardiographic examination demonstrated significantly smaller mean values of both the left ventricular (LV) end-diastolic and end-systolic dimensions, stroke volume indexes and cardiac indexes in CFS patients with “small heart” than in those without it and also in 20 control subjects. Thus, CFS patients with “small heart” had an actually small LV chamber and poor cardiac performance. During a long follow-up period of 10 CFS patients with “small heart”, all echocardiographic parameters mentioned above improved and cardiothoracic ratios increased significantly during the remission phase as compared with exacerbation phase.

CONCLUSIONS: “Small heart” on the chest X-ray photograph was prevalently noted in CFS patients. Echocardiographic examination revealed that CFS patients with “small heart” had an actually small LV chamber and poor cardiac performance. Cardiac functional changes evaluated by repeated examinations appeared to be directly associated with the severity of their symptoms. Small heart syndrome with impaired cardiac function may contribute to the development of CFS through low cardiac output as a constitutional factor.

 

Source: Miwa K, Fujita M. Cardiac function fluctuates during exacerbation and remission in young adults with chronic fatigue syndrome and “small heart”. J Cardiol. 2009 Aug;54(1):29-35. doi: 10.1016/j.jjcc.2009.02.008. Epub 2009 Mar 28. http://www.journal-of-cardiology.com/article/S0914-5087(09)00066-5/fulltext (Full article)

 

Chronic fatigue syndrome. Distinguish between syndromes…

Comment in: Chronic fatigue syndrome and myalgic encephalomyelitis. [BMJ. 1994]

Comment on: Longitudinal study of outcome of chronic fatigue syndrome. [BMJ. 1994]

 

EDITOR,-I note that several people writing in the BMY are still confusing myalgic encephalomyelitis with the chronic fatigue syndrome. I wish to clarify matters. From a scientist’s point of view, the main problem is not the term chronic fatigue syndrome but the various diagnostic criteria that go with it. For instance, the strict Australian definition adopted by Wilson et al is similar to that for myalgic encephalomyelitis.2 As a result, it is reasonably certain that in this article the two names probably refer to the same disease.

The “Oxford” criteria used in Britain, however, are far broader, covering all patients whose severe, unexplained fatigue has been present for at least half of the time and for at least six months. The only other requirements are that the fatigue must have had a definite onset and that it affects both physical and mental functioning. Unlike with the strict Australian definition, no immunological criteria have to be met.2 Moreover, there do not have to be appreciable fluctuations in symptoms still a major criterion for myalgic encephalomyelitis.

In terms of prevalence, a recent study found that 17 of 686 (2-5%) attenders in general practice fulfilled the Oxford criteria for the chronic fatigue syndrome.3 When a further four patients who did not meet the criterion of a definite onset were also included the estimated prevalence increased to 3%. In contrast, the prevalence of myalgic encephalomyelitis rarely exceeds 1-5 per 1000.4

Most patients who fulfil the Oxford criteria suffer not from myalgic encephalomyelitis but from more common conditions, notably depression, anxiety states, sleep disorders, and fibromyalgia. None of these disorders occur in epidemics …

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540201/pdf/bmj00440-0053c.pdf

 

Source: Goudsmit EM. Chronic fatigue syndrome. Distinguish between syndromes… BMJ. 1994 May 14;308(6939):1297-8. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540201/

 

The chronic fatigue syndrome

Abstract:

CFIDS (chronic fatigue and immune disfunction syndrome) is also known as CFS (chronic fatigue syndrome), CEBV (chronic Epstein-Barr virus), M.E. (myalgic encephalomyelitis), yuppie flu and by other names.

It is a complex illness characterized by incapacitating fatigue (experienced as exhaustion and extremely poor stamina), neurological problems and a constellation of symptoms that can resemble many disorders, including; mononucleosis, multiple sclerosis, fibromyalgia, AIDS-related complex (ARC) and autoimmune diseases such as lupus. These symptoms tend to wax and wane, but any often severely debilitating and may last for many months or years. All sections of the population (including children) are at risk, but women under 45 seem to be most susceptible.

The investigators suggest that CFIDS results from dysfunction of the immune system. The exact nature of this dysfunction is not yet well defined, but it can generally be viewed as an unregulated or overactive state which is responsible for most of the symptoms. There is also evidence of some immune suppression in CFIDS. None of the treatments is consistently satisfactory, but some may be helpful: psychotherapy, physiotherapy, exercise programs, acupunctures, small doses of antidepressants, etc.

 

Source: Artsimovich NG, Chugunov VS, Kornev AV, Ivanova TM, Chugunov AV, Oprishchenko MA. The chronic fatigue syndrome. Zh Nevrol Psikhiatr Im S S Korsakova. 1994;94(5):47-50. [Article in Russian] http://www.ncbi.nlm.nih.gov/pubmed/7900453