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Healthcare, Special Issue: ME/CFS ― The Severely and Very Severely Affected
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==Research== *[https://doi.org/10.3390/healthcare8020169 Cerebral Blood Flow Is Reduced in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients During Mild Orthostatic Stress Testing: An Exploratory Study at 20 Degrees of Head-Up Tilt Testing]<ref name="CBF2020">{{Cite journal | last = van Campen | first = C. (Linda) M.C. | authorlink = Linda van Campen | last2 = Rowe | first2 = Peter C. | authorlink2 = Peter Rowe | last3 = Visser | first3 = Frans C. | authorlink3 = Frans Visser | date = Jun 2020 | title = Cerebral Blood Flow Is Reduced in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients During Mild Orthostatic Stress Testing: An Exploratory Study at 20 Degrees of Head-Up Tilt Testing | url =https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7349207|journal=Healthcare|language=en|volume=8|issue=2 | pages = 169|doi=10.3390/healthcare8020169|pmc=PMC7349207|pmid=32545797|access-date=|quote=|via=}}</ref> (Jun 13, 2020) by C (Linda) M.C. van Campen, Peter C. Rowe and Frans C. Visser. ''Healthcare 2020, 8(2), 169.'' <blockquote>'''Introduction -''' In a study of 429 adults with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), we demonstrated that 86% had symptoms of orthostatic intolerance in daily life. Using extracranial Doppler measurements of the internal carotid and vertebral arteries during a 30-min head-up tilt to 70 degrees, 90% had an abnormal reduction in cerebral blood flow (CBF). A standard head-up tilt test of this duration might not be tolerated by the most severely affected bed-ridden ME/CFS patients. This study examined whether a shorter 15-min test at a lower 20 degree tilt angle would be sufficient to provoke reductions in cerebral blood flow in severe ME/CFS patients.<br>'''Methods and results -''' Nineteen severe ME/CFS patients with orthostatic intolerance complaints in daily life were studied: 18 females. The mean (SD) age was 35(14) years, body surface area (BSA) was 1.8(0.2) m2 and BMI was 24.0(5.4) kg/m2. The median disease duration was 14 (IQR 5–18) years. Heart rate increased, and stroke volume index and end-tidal CO2 decreased significantly during the test (p ranging from <0.001 to <0.0001). The cardiac index decreased by 26(7)%: p < 0.0001. CBF decreased from 617(72) to 452(63) mL/min, a 27(5)% decline. All 19 severely affected ME/CFS patients met the criteria for an abnormal CBF reduction.<br>'''Conclusions -''' Using a less demanding 20 degree tilt test for 15 min in severe ME/CFS patients resulted in a mean CBF decline of 27%. This is comparable to the mean 26% decline previously noted in less severely affected patients studied during a 30-min 70 degree head-up tilt. These observations have implications for the evaluation and treatment of severely affected individuals with ME/CFS.</blockquote> *[https://doi.org/10.3390/healthcare8030192 Two-Day Cardiopulmonary Exercise Testing in Females with a Severe Grade of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Comparison with Patients with Mild and Moderate Disease]<ref name="Twoday2021">{{Cite journal | last = van Campen | first = C. (Linda) M.C. | authorlink = Linda van Campen | last2 = Rowe | first2 = Peter C. | authorlink2 = Peter Rowe | last3 = Visser | first3 = Frans C. | authorlink3 = Frans Visser | date = Sep 2020 | title = Two-Day Cardiopulmonary Exercise Testing in Females with a Severe Grade of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Comparison with Patients with Mild and Moderate Disease| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7551790|journal=Healthcare|language=en|volume=8|issue=3 | pages = 192|doi=10.3390/healthcare8030192|pmc=PMC7551790|pmid=32629923|access-date=|quote=|via=}}</ref> (Jun 30, 2020) by C (Linda) M. C. van Campen, Peter C. Rowe and Frans C. Visser. ''Healthcare 2020, 8(3), 192.'' <blockquote>'''Introduction -''' Effort intolerance along with a prolonged recovery from exercise and post-exertional exacerbation of symptoms are characteristic features of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The gold standard to measure the degree of physical activity intolerance is cardiopulmonary exercise testing (CPET). Multiple studies have shown that peak oxygen consumption is reduced in the majority of ME/CFS patients, and that a 2-day CPET protocol further discriminates between ME/CFS patients and sedentary controls. Limited information is present on ME/CFS patients with a severe form of the disease. Therefore, the aim of this study was to compare the effects of a 2-day CPET protocol in female ME/CFS patients with a severe grade of the disease to mildly and moderately affected ME/CFS patients.<br>'''Methods and results -''' We studied 82 female patients who had undergone a 2-day CPET protocol. Measures of oxygen consumption (VO2), heart rate (HR) and workload both at peak exercise and at the ventilatory threshold (VT) were collected. ME/CFS disease severity was graded according to the International Consensus Criteria. Thirty-one patients were clinically graded as having mild disease, 31 with moderate and 20 with severe disease. Baseline characteristics did not differ between the 3 groups. Within each severity group, all analyzed CPET parameters (peak VO2, VO2 at VT, peak workload and the workload at VT) decreased significantly from day-1 to day-2 (p-Value between 0.003 and <0.0001). The magnitude of the change in CPET parameters from day-1 to day-2 was similar between mild, moderate, and severe groups, except for the difference in peak workload between mild and severe patients (p = 0.019). The peak workload decreases from day-1 to day-2 was largest in the severe ME/CFS group (−19 (11) %).<br>'''Conclusion -''' This relatively large 2-day CPET protocol study confirms previous findings of the reduction of various exercise variables in ME/CFS patients on day-2 testing. This is the first study to demonstrate that disease severity negatively influences exercise capacity in female ME/CFS patients. Finally, this study shows that the deterioration in peak workload from day-1 to day-2 is largest in the severe ME/CFS patient group.</blockquote> *[https://www.ncbi.nlm.nih.gov/pmc/articles/pmc7551321/ Validation of the Severity of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by Other Measures than History: Activity Bracelet, Cardiopulmonary Exercise Testing and a Validated Activity Questionnaire: SF-36]<ref name="CampenBracelet">{{Cite journal | last = van Campen | first = C. (Linda) M.C. | authorlink = Linda van Campen | last2 = Rowe | first2 = Peter C. | authorlink2 = Peter Rowe | last3 = Visser | first3 = Frans C. | authorlink3 = Frans Visser | date = Sep 2020 | title = Validation of the Severity of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by Other Measures than History: Activity Bracelet, Cardiopulmonary Exercise Testing and a Validated Activity Questionnaire: SF-36| url = https://www.ncbi.nlm.nih.gov/pmc/articles/pmc7551321/|journal=Healthcare|language=en|volume=8|issue=3 | pages = 273|doi=10.3390/healthcare8030273|pmc=PMC7551321|pmid=32823979|access-date=|quote=|via=}}</ref> (Aug 14, 2020) by C. (Linda) M. C. van Campen, Peter C. Rowe and Frans C. Visser. ''Healthcare 2020, 8(3), 273.'' <blockquote>'''Introduction -''' Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe and disabling chronic disease. Grading patient’s symptom and disease severity for comparison and therapeutic decision-making is necessary. Clinical grading that depends on patient self-report is subject to inter-individual variability. Having more objective measures to grade and confirm clinical grading would be desirable. Therefore, the aim of this study was to validate the clinical severity grading that has been proposed by the authors of the ME International Consensus Criteria (ICC) using more standardized measures like questionnaires, and objective measures such as physical activity tracking and cardiopulmonary exercise testing.<br> '''Methods and results -''' The clinical database of a subspecialty ME/CFS clinic was searched for patients who had completed the SF 36 questionnaire, worn a SensewearTM armband for five days, and undergone a cardiopulmonary exercise test. Only patients who completed all three investigations within 3 months from each other—to improve the likelihood of stable disease—were included in the analysis. Two-hundred-eighty-nine patients were analyzed: 121 were graded as mild, 98 as moderate and 70 as having severe disease. The mean (SD) physical activity subscale of the SF-36 was 70 (11) for mild, 43 (8) for moderate and 15 (10) for severe ME/CFS patients. The mean (SD) number of steps per day was 8235 (1004) for mild, 5195 (1231) for moderate and 2031 (824) for severe disease. The mean (SD) percent predicted oxygen consumption at the ventilatory threshold was 47 (11)% for mild, 38 (7)% for moderate and 30 (7)% for severe disease. The percent peak oxygen consumption was 90 (14)% for mild, 64 (8)% for moderate and 48 (9)% for severe disease. All comparisons were p < 0.0001.<br>'''Conclusions -''' This study confirms the validity of the ICC severity grading. Grading assigned by clinicians on the basis of patient self-report created groups that differed significantly on measures of activity using the SF-36 physical function subscale and objective measures of steps per day and exercise capacity. There was variability in function within severity grading groups, so grading based on self-report can be strengthened by the use of these supplementary measures.</blockquote> *[https://doi.org/10.3390/healthcare8040394 Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients]<ref name="SittingvanCampen2020">{{Cite journal | last = van Campen | first = C. (Linda) MC | authorlink = Linda van Campen | last2 = Rowe | first2 = Peter C. | authorlink2 = Peter Rowe | last3 = Visser | first3 = Frans C. | authorlink3 = Frans Visser | date = 2020-10-12 | title = Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7712289|journal=Healthcare|language=en|volume=8|issue=4 | pages = 394|doi=10.3390/healthcare8040394|pmc=PMC7712289|pmid=33050553|access-date=|quote=|via=}}</ref> (Oct 11, 2020) by C (Linda) MC van Campen, Peter C. Rowe and Frans C Visser. ''Healthcare 2020, 8(4), 394.'' <blockquote>'''Introduction -''' In a large study with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients, we showed that 86% had symptoms of orthostatic intolerance in daily life and that 90% had an abnormal reduction in cerebral blood flow (CBF) during a standard tilt test. A standard head-up tilt test might not be tolerated by the most severely affected bed-ridden ME/CFS patients. Sitting upright is a milder orthostatic stress. The present study examined whether a sitting test, measuring cerebral blood flow by extracranial Doppler, would be sufficient to provoke abnormal reductions in cerebral blood flow in severe ME/CFS patients.<br>'''Methods and results -''' 100 severe ME/CFS patients were studied, (88 females) and were compared with 15 healthy controls (HC) (13 females). CBF was measured first while seated for at least one hour, followed by a CBF measurement in the supine position. Fibromyalgia was present in 37 patients. Demographic data as well as supine heart rate and blood pressures were not different between ME/CFS patients and HC. Heart rate and blood pressure did not change significantly between supine and sitting both in patients and HC. Supine CBF was not different between patients and HC. In contrast, absolute CBF during sitting was lower in patients compared to HC: 474 (96) mL/min in patients and 627 (89) mL/min in HC; p < 0.0001. As a result, percent CBF reduction while seated was −24.5 (9.4)% in severe ME/CFS patients and −0.4 (1.2)% in HC (p < 0.0001). In the ten patients who had no orthostatic intolerance complaints in daily life, the CBF reduction was −2.7 (2.1)%, which was not significantly different from HC (p = 0.58). The remaining 90 patients with orthostatic intolerance complaints had a −26.9 (6.2)% CBF reduction. No difference in CBF parameters was found in patients with and without fibromyalgia. Patients with a previous diagnosis of postural orthostatic tachycardia syndrome (POTS) had a significantly larger CBF reduction compared with those without POTS: 28.8 (7.2)% vs. 22.3 (9.7)% (p = 0.0008).<br>'''Conclusions -''' A sitting test in severe ME/CFS patients was sufficient to provoke a clinically and statistically significant mean CBF decline of 24.5%. Patients with a previous diagnosis of POTS had a larger CBF reduction while seated, compared to patients without POTS. The magnitude of these CBF reductions is similar to the results in less severely affected ME/CFS patients during head-up tilt, suggesting that a sitting test is adequate for the diagnosis of orthostatic intolerance in severely affected patients.</blockquote> *[https://doi.org/10.3390/healthcare8040427 Reliability and Validity of the Modified Korean Version of the Chalder Fatigue Scale (mKCFQ11)]<ref name="Ahn2020">{{Cite journal | last = Ahn | first = Yo-Chan | authorlink = | last2 = Lee | first2 = Jin-Seok | authorlink2 = | last3 = Son | first3 = Chang-Gue | authorlink3 = | date = Dec 2020 | title = Reliability and Validity of the Modified Korean Version of the Chalder Fatigue Scale (mKCFQ11)| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7712859|journal=Healthcare|language=en|volume=8|issue=4 | pages = 427|doi=10.3390/healthcare8040427|pmc=PMC7712859|pmid=33114401|access-date=|quote=|via=}}</ref> (Oct 24, 2020) by Yo-Chan Ahn, Jin-Seok Lee and Chang-Gue Son. ''Healthcare 2020, 8(4), 427.'' <blockquote>'''Abstract -''' Fatigue can accompany various diseases; however, fatigue itself is a key symptom for patients with chronic fatigue syndrome (CFS). Due to the absence of biological parameters for the diagnosis and severity of CFS, the assessment tool for the degree of fatigue is very important. This study aims to verify the reliability and validity of the modified Korean version of the Chalder Fatigue Scale (mKCFQ11). This study was performed using data from 97 participants (Male: 37, Female: 60) enrolled in a clinical trial for an intervention of CFS. The analyses of the coefficient between the mKCFQ11 score and the Fatigue Severity Scale (FSS), the Visual Analogue Scale (VAS) or the 36-item Short-Form Health Survey (SF-36) at two time points (baseline and 12 weeks) as well as their changed values were conducted. The mKCFQ11 showed strong reliability, as evidenced by the Cronbach’s alpha coefficient of 0.967 for the whole item and two subclasses (0.963 for physical and 0.958 for mental fatigue) along with the suitable validity of the mKCFQ11 structure shown by the principal component analysis. The mKCFQ11 scores also strongly correlated (higher than 0.7) with the VAS, FSS and SF-36 on all data from baseline and 12 weeks and changed values. This study demonstrated the clinical usefulness of the mKCFQ11 instrument, particularly in assessing the severity of fatigue and the evaluation of treatments for patients suffering from CFS.</blockquote> *[https://doi.org/10.3390/healthcare9020106 Homebound versus Bedridden Status among Those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]<ref name="Conroy2021">{{Cite journal | last = Conroy | first = Karl | authorlink = | last2 = Bhatia | first2 = Shaun | authorlink2 = | last3 = Islam | first3 = Mohammed | authorlink3 = | last4 = Jason | first4 = Leonard A. | authorlink4 = Leonard Jason | date = Feb 2021 | title = Homebound versus Bedridden Status among Those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7909520|journal=Healthcare|language=en|volume=9|issue=2 | pages = 106|doi=10.3390/healthcare9020106|pmc=PMC7909520|pmid=33498489|access-date=|quote=|via=}}</ref> (Jan 20, 2021) by Karl Conroy, Shaun Bhatia, Mohammed Islam and Leonard A. Jason. ''Healthcare 2021, 9(2), 106.'' <blockquote>'''Abstract -''' Persons living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) vary widely in terms of the severity of their illness. It is estimated that of those living with ME/CFS in the United States, about 385,000 are homebound. There is a need to know more about different degrees of being homebound within this severely affected group. The current study examined an international sample of 2138 study participants with ME/CFS, of whom 549 were severely affected (operationalized as ‘Homebound’). A subsample of 89 very severely affected participants (operationalized as ‘Homebound-bedridden’) was also examined. The findings showed a significant association between severely and very severely affected participants within the post-exertional malaise (PEM) symptom domain. The implications of these findings are discussed.</blockquote> *[https://doi.org/10.3390/healthcare8030273 Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis]<ref>{{Cite journal | last = van Campen | first = C. (Linda) M.C. | authorlink = Linda van Campen | last2 = Rowe | first2 = Peter C. | authorlink2 = Peter Rowe | last3 = Visser | first3 = Frans C. | authorlink3 = Frans Visser | date = Sep 2020 | title = Validation of the Severity of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by Other Measures than History: Activity Bracelet, Cardiopulmonary Exercise Testing and a Validated Activity Questionnaire: SF-36| url = https://www.mdpi.com/2227-9032/8/3/273|journal=Healthcare|language=en|volume=8|issue=3 | pages = 273|doi=10.3390/healthcare8030273|pmc=PMC7551321|pmid=32823979|access-date=|quote=|via=}}</ref> (Feb 5, 2021) by Victoria Strassheim, Julia L. Newton and Tracy Collins. ''Healthcare 2021, 9(2), 168.'' <blockquote>'''Abstract -''' Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a rare disease with no known etiology. It affects 0.4% of the population, 25% of which experience the severe and very severe categories; these are defined as being wheelchair-, house-, and bed-bound. Currently, the absence of biomarkers necessitates a diagnosis by exclusion, which can create stigma around the illness. Very little research has been conducted with the partly defined severe and very severe categories of CFS/ME. This is in part because the significant health burdens experienced by these people create difficulties engaging in research and healthcare provision as it is currently delivered. This qualitative study explores the experiences of five individuals living with CFS/ME in its most severe form through semi-structured interviews. A six-phase themed analysis was performed using interview transcripts, which included identifying, analysing, and reporting patterns amongst the interviews. Inductive analysis was performed, coding the data without trying to fit it into a pre-existing framework or pre-conception, allowing the personal experiences of the five individuals to be expressed freely. Overarching themes of ‘Lived Experience’, ‘Challenges to daily life’, and ‘Management of the condition’ were identified. These themes highlight factors that place people at greater risk of experiencing the more severe presentation of CFS/ME. It is hoped that these insights will allow research and clinical communities to engage more effectively with the severely affected CFS/ME population.</blockquote> *[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8535418 A Comprehensive Examination of Severely Ill ME/CFS Patients]<ref name="Chang2021-Ex">{{Cite journal | last = Chang | first = Chia-Jung | authorlink = | last2 = Hung | first2 = Li-Yuan | authorlink2 = | last3 = Kogelnik | first3 = Andreas M. | authorlink3 = Andreas Kogelnik | last4 = Kaufman | first4 = David | authorlink4 = David Kaufman | last5 = Aiyar | first5 = Raeka S. | authorlink5 = | last6 = Chu | first6 = Angela M. | authorlink6 = | last7 = Wilhelmy | first7 = Julie | last8 = Li | first8 = Peng | last9 = Tannenbaum | first9 = Linda | date = Oct 2021 | title = A Comprehensive Examination of Severely Ill ME/CFS Patients| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8535418|journal=Healthcare|language=en|volume=9|issue=10 | pages = 1290|doi=10.3390/healthcare9101290|pmc=PMC8535418|pmid=34682970|access-date=|quote=|via= | author-link9 = Linda Tannenbaum | authorlink7 = Julie Wilhelmy}}</ref> (Sep 29, 2021) by Chia-Jung Chang, Li-Yuan Hung, Andreas M. Kogelnik, David Kaufman, Raeka S. Aiyar, Angela M. Chu, Julie Wilhelmy, Peng Li, Linda Tannenbaum, Wenzhong Xiao and Ronald W. Davis. ''Healthcare 2021, 9(10), 1290.'' <blockquote>'''Abstract -''' One in four myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients are estimated to be severely affected by the disease, and these house-bound or bedbound patients are currently understudied. Here, we report a comprehensive examination of the symptoms and clinical laboratory tests of a cohort of severely ill patients and healthy controls. The greatly reduced quality of life of the patients was negatively correlated with clinical depression. The most troublesome symptoms included fatigue (85%), pain (65%), cognitive impairment (50%), orthostatic intolerance (45%), sleep disturbance (35%), post-exertional malaise (30%), and neurosensory disturbance (30%). Sleep profiles and cognitive tests revealed distinctive impairments. Lower morning cortisol level and alterations in its diurnal rhythm were observed in the patients, and antibody and antigen measurements showed no evidence for acute infections by common viral or bacterial pathogens. These results highlight the urgent need of developing molecular diagnostic tests for ME/CFS. In addition, there was a striking similarity in symptoms between long COVID and ME/CFS, suggesting that studies on the mechanism and treatment of ME/CFS may help prevent and treat long COVID and vice versa.</blockquote> *[https://doi.org/10.3390/healthcare8040406 Cardiac Dimensions and Function are Not Altered among Females with the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]<ref name="Iversen2021">{{Cite journal | last = Iversen | first = Per Ole | authorlink = | last2 = Lueder | first2 = Thomas Gero von | authorlink2 = | last3 = Kardel | first3 = Kristin Reimers | authorlink3 = | last4 = Lien | first4 = Katarina | authorlink4 = | date = Dec 2020 | title = Cardiac Dimensions and Function are Not Altered among Females with the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7712104|journal=Healthcare|language=en|volume=8|issue=4 | pages = 406|doi=10.3390/healthcare8040406|pmc=PMC7712104|pmid=33081294|access-date=|quote=|via=}}</ref> (Oct 16, 2021) by Per Ole Iversen, Thomas Gero von Lueder, Kristin Reimers Kardel and Katarina Lien. ''Healthcare 2020, 8(4), 406.'' <blockquote>'''Background -''' Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition associated with several negative health outcomes. A hallmark of ME/CFS is decreased exercise capacity and often profound exercise intolerance. The causes of ME/CSF and its related symptoms are unknown, but there are indications of a dysregulated metabolism with impaired glycolytic vs oxidative energy balance. In line with this, we recently demonstrated abnormal lactate accumulation among ME/CFS patients compared with healthy controls after exercise testing. Here we examined if cardiac dimensions and function were altered in ME/CFS, as this could lead to increased lactate production.<br>'''Methods -''' We studied 16 female ME/CFS patients and 10 healthy controls with supine transthoracic echocardiography, and we assessed cardiac dimensions and function by conventional echocardiographic and Doppler analysis as well as novel tissue Doppler and strain variables.<br>'''Results -''' A detailed analyses of key variables of cardiac dimensions and cardiac function revealed no significant differences between the two study groups.<br>'''Conclusion -''': In this cohort of well-described ME/CFS patients, we found no significant differences in echocardiographic variables characterizing cardiac dimensions and function compared with healthy controls.</blockquote> *[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8623232 Chronic Fatigue Syndrome: A Case Report Highlighting Diagnosing and Treatment Challenges and the Possibility of Jarisch–Herxheimer Reactions if High Infectious Loads Are Present]<ref name="Straub2021">{{Cite journal | last = Straub | first = Rachel K. | authorlink = Rachel Straub | last2 = Powers | first2 = Christopher M. | date = Nov 2021 | title = Chronic Fatigue Syndrome: A Case Report Highlighting Diagnosing and Treatment Challenges and the Possibility of Jarisch–Herxheimer Reactions if High Infectious Loads Are Present| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8623232|journal=Healthcare|language=en|volume=9|issue=11 | pages = 1537|doi=10.3390/healthcare9111537|pmc=PMC8623232|pmid=34828583|access-date=|quote=|via=}}</ref> (Nov 10, 2021) by Rachel K. Straub and Christopher M. Powers. ''Healthcare 2021, 9(11), 1537.'' <blockquote>'''Abstract -''' Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex multi-system disease with no cure and no FDA-approved treatment. Approximately 25% of patients are house or bedbound, and some are so severe in function that they require tube-feeding and are unable to tolerate light, sound, and human touch. The overall goal of this case report was to (1) describe how past events (e.g., chronic [[sinusitis]], amenorrhea, tick bites, congenital [[neutropenia]], psychogenic polydipsia, [[food intolerance]]s, and [[hypothyroidism]]) may have contributed to the development of severe ME/CFS in a single patient, and (2) the extensive medical interventions that the patient has pursued in an attempt to recover, which enabled her to return to graduate school after becoming bedridden with ME/CFS 4.5 years prior. This paper aims to increase awareness of the harsh reality of ME/CFS and the potential complications following initiation of any level of intervention, some of which may be necessary for long-term healing. Treatments may induce severe paradoxical reactions ([[Jarisch-Herxheimer reaction]]) if high infectious loads are present. It is our hope that sharing this case will improve research and treatment options for ME/CFS.</blockquote> ===Case reports=== *[https://doi.org/10.3390/healthcare8030211 Severe ME in Children]<ref name="Speight2020">{{Cite journal | last = Speight | first = Nigel | authorlink = Nigel Speight | date = Sep 2020 | title = Severe ME in Children | url =https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7551866/|journal=Healthcare|language=en|volume=8|issue=3 | pages = 211|doi=10.3390/healthcare8030211|pmc=PMC7551866|pmid=32674263|access-date=|quote=|via=}}</ref> (Jul 14, 2020) by Nigel Speight. ''Healthcare 2020, 8(3), 211.'' <blockquote>'''Abstract -''' A current problem regarding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is the large proportion of doctors that are either not trained or refuse to recognize ME/CFS as a genuine clinical entity, and as a result do not diagnose it. An additional problem is that most of the clinical and research studies currently available on ME are focused on patients who are ambulant and able to attend clinics and there is very limited data on patients who are very severe (housebound or bedbound), despite the fact that they constitute an estimated 25% of all ME/CFS cases. This author has personal experience of managing and advising on numerous cases of severe paediatric ME, and offers a series of case reports of individual cases as a means of illustrating various points regarding clinical presentation, together with general principles of appropriate management.</blockquote> *[https://doi.org/10.3390/healthcare9020215 Three Cases of Severe ME/CFS in Adults]<ref name="Williams2021">{{Cite journal | last = Williams | first = Leah R. | authorlink = | last2 = Isaacson-Barash | first2 = Carol | authorlink2 = | date = Feb 2021 | title = Three Cases of Severe ME/CFS in Adults| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7920463|journal=Healthcare|language=en|volume=9|issue=2 | pages = 215|doi=10.3390/healthcare9020215|pmc=PMC7920463|pmid=33669438|access-date=|quote=|via=}}</ref> (Feb 16, 2021) by Leah R. Williams and Carol Isaacson-Barash. ''Healthcare 2021, 9(2), 215.'' <blockquote>'''Abstract -''' Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, only partially understood multi-system disease whose onset and severity vary widely. Symptoms include overwhelming [[fatigue]], [[post-exertional malaise]], [[sleep dysfunction|sleep disruptions]], gastrointestinal issues, [[headache]]s, [[orthostatic intolerance]], [[cognitive impairment]], etc. ME/CFS is a physiological disease with an onset often triggered by a viral or bacterial infection, and sometimes by toxins. Some patients have a mild case and are able to function nearly on a par with healthy individuals, while others are moderately ill and still others are severely, or even, very severely ill. The cohort of moderately to very severely ill is often housebound or bedbound, has lost employment or career, and has engaged in a long, and often futile, search for treatment and relief. Here, we present three case studies, one each of a moderately ill, a severely ill, and a very severely ill person, to demonstrate the complexity of the disease, the suffering of these patients, and what health care providers can do to help.</blockquote> *[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8070213 Life-Threatening Malnutrition in Very Severe ME/CFS]<ref name="malnutrition">{{Cite journal | last = Baxter | first = Helen | authorlink = | last2 = Speight | first2 = Nigel | authorlink2 = Nigel Speight | last3 = Weir | first3 = William | authorlink3 = William Weir | date = Apr 2021 | title = Life-Threatening Malnutrition in Very Severe ME/CFS| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8070213|journal=Healthcare|language=en|volume=9|issue=4 | pages = 459|doi=10.3390/healthcare9040459|pmc=PMC8070213|pmid=33919671|access-date=|quote=|via=}}</ref> (Apr 14, 2021) by Helen Baxter, Nigel Speight and William Weir. ''Healthcare 2021, 9(4), 459.'' <blockquote>'''Abstract -''' Very severe Myalgic Encephalomyelitis (ME), (also known as Chronic Fatigue Syndrome) can lead to problems with nutrition and hydration. The reasons can be an inability to swallow, severe gastrointestinal problems tolerating food or the patient being too debilitated to eat and drink. Some patients with very severe ME will require tube feeding, either enterally or parenterally. There can often be a significant delay in implementing this, due to professional opinion, allowing the patient to become severely malnourished. Healthcare professionals may fail to recognize that the problems are a direct consequence of very severe ME, preferring to postulate psychological theories rather than addressing the primary clinical need. We present five case reports in which delay in instigating tube feeding led to severe malnutrition of a life-threatening degree. This case study aims to alert healthcare professionals to these realities.</blockquote>
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