Tag: severely ill patients

A Comprehensive Examination of Severely Ill ME/CFS Patients

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.
Source: Chang C-J, Hung L-Y, Kogelnik AM, Kaufman D, Aiyar RS, Chu AM, Wilhelmy J, Li P, Tannenbaum L, Xiao W, Davis RW. A Comprehensive Examination of Severely Ill ME/CFS Patients. Healthcare. 2021; 9(10):1290. https://doi.org/10.3390/healthcare9101290 https://www.mdpi.com/2227-9032/9/10/1290/htm  (Full text)

Extremely Severe ME/CFS—A Personal Account

Abstract:

A personal account from an Extremely Severe Bedridden ME/CFS patient about the experience of living with extremely severe ME/CFS. Illness progression, medical history, description of various aspects of extremely severe ME/CFS and various essays on specific experiences are included.
Source: Dafoe W. Extremely Severe ME/CFS—A Personal Account. Healthcare. 2021; 9(5):504. https://doi.org/10.3390/healthcare9050504 https://www.mdpi.com/2227-9032/9/5/504/htm (Full text)

Remembering the Severely Ill and Appreciating ALL That You Do

Today we remember the severely ill in our community – those who have suffered the ravages of ME/CFS and borne the brunt of the disease with “grace and grit.” Some, like Sophia Mirza, whose birthday falls on August 8th, have not survived. Others must simply bear it year after year. And still others manage to improve, despite the odds. We honor all of the severely ill on this day, and we treasure their lives.

For the severely ill, simply surviving can absorb every ounce of strength they have. It’s difficult enough coping with the disease, but having to weather it alone is devastating. Not only do severely ill patients who have nobody to turn to experience extreme isolation, but the financial hardship can be devastating.

AMMES’ financial crisis fund is meant to assist severely ill patients with bills they cannot pay. On this day, my mind turns to them. I think of a woman who did not own a pair of shoes, and was sitting in the dark, alone, after her power had been cut off when her electricity bill hadn’t been paid. I think of a man who had been evicted on December 31st in the heart of the midwest, and who had nowhere to go on that frigid night. I think of a mother with ME, trying to raise her young son, who also has ME, the two of them attempting to get medical care that their insurance would not cover, because health insurance rarely covers visits to specialists. I think of all of the people who have received help from the financial crisis fund. Their stories ring in my ears.

And I think of the good people who have donated to the fund, because without their contributions, we couldn’t help anyone. I think of people who have included AMMES in their wills, and who I only know through a lawyer’s letter containing news of their demise along with a bequest. I am deeply saddened that I never got to meet these compassionate souls. Their hearts are kind. I think of the steady monthly donations of $3, $5, or $10 from people who surely can’t spare the money, but who still want to reach out and help. Their hearts are beautiful. I think of those in our community who have had the good fortune to remain financially stable, and who share their wealth. Their hearts are generous.

On this day, I remember and honor all who have suffered, and all who have joined hands to help them financially, medically, emotionally, and spiritually. Looking out for one another is what makes us a community. May those bonds remain strong and enduring.

***

You can read more about the AMMES financial crisis fund here. We are always looking for more people to assist. Send them to us!

(Image from left to right: Sophia Mirza, Jamison Hill, Karina Hansen, Whitney Dafoe.)

The Impact of Severe ME/CFS on Student Learning and K-12 Educational Limitations

Abstract:

Children with ME/CFS who are severely ill are bedbound and homebound, and oftentimes also wheelchair-dependent. Very seriously affected children are often too sick for doctor’s office visits, let alone school attendance. The most recent data estimate that 2-5% of children may be severely affected or bedridden. However, there is no recent research that confirms these numbers. The severely ill receive little help from their schools, and are socially isolated. This article outlines several suggestions for the type of education that students with ME/CFS should be receiving and develops a preliminary sketch of the web of resources and emergent techniques necessary to achieve these outcomes.

Source: Newton FR. The Impact of Severe ME/CFS on Student Learning and K-12 Educational Limitations. Healthcare (Basel). 2021 May 25;9(6):627. doi: 10.3390/healthcare9060627. PMID: 34070286. https://pubmed.ncbi.nlm.nih.gov/34070286/

Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected

Abstract:

People who are severely and very severely affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) experience profound suffering. This suffering comes from the myriad of losses these patients experience, the grief that comes from these losses, the ongoing stigma that is often experienced as a person with a poorly understood, controversial chronic illness, and the trauma that can result from how other people and the health care community respond to this illness. This review article examines the suffering of patients with ME/CFS through the lens of the Fennell Four-Phase Model of chronic illness.

Using a systems approach, this phase framework illustrates the effects of suffering on the patient and can be utilized to help the clinician, patient, family, and caregivers understand and respond to the patient’s experiences. We highlight the constructs of severity, uncertainty, ambiguity, and chronicity and their role in the suffering endured by patients with ME/CFS. A composite case example is used to illustrate the lives of severely and very severely affected patients. Recommendations for health care providers treating patients with ME/CFS are given and underscore the importance of providers understanding the intense suffering that the severely and very severely affected patients experience.

Source: Fennell PA, Dorr N, George SS. Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected. Healthcare (Basel). 2021 May 9;9(5):553. doi: 10.3390/healthcare9050553. PMID: 34065069. https://pubmed.ncbi.nlm.nih.gov/34065069/

Three Cases of Severe ME/CFS in Adults

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 disruptions, gastrointestinal issues, headaches, 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.

Source: Williams LR, Isaacson-Barash C. Three Cases of Severe ME/CFS in Adults. Healthcare (Basel). 2021 Feb 16;9(2):215. doi: 10.3390/healthcare9020215. PMID: 33669438; PMCID: PMC7920463. https://www.mdpi.com/2227-9032/9/2/215 (Full text)

Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

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.

Source: Strassheim V, Newton JL, Collins T. Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Healthcare (Basel). 2021 Feb 5;9(2):168. doi: 10.3390/healthcare9020168. PMID: 33562474. https://pubmed.ncbi.nlm.nih.gov/33562474/

Homebound versus Bedridden Status among Those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

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.

Source: Conroy K, Bhatia S, Islam M, Jason LA. Homebound versus Bedridden Status among Those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Healthcare (Basel). 2021 Jan 20;9(2):E106. doi: 10.3390/healthcare9020106. PMID: 33498489. https://pubmed.ncbi.nlm.nih.gov/33498489/

Risks for Developing ME/CFS in College Students Following Infectious Mononucleosis: A Prospective Cohort Study

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) involves severe fatigue, unrefreshing sleep, and cognitive impairment, leading to functional difficulties; prior studies have not evaluated risk factors with behavioral and immune data collected prior to developing ME/CFS.. Up to 5% of university students develop infectious mononucleosis (IM) annually, and 9-12% meet criteria for ME/CFS six months later. We sought to determine predictors of ME/CFS.

Methods: We enrolled college students at the start of the school year (Time 1), identified those who developed IM (Time 2) and followed them for 6 months (Time 3), identifying three groups: those who developed ME/CFS, those who developed severe ME/CFS (meeting >1 set of criteria) and those who were asymptomatic. We conducted 8 behavioral and psychological surveys and analyzed cytokines at three time points.

Results: 238 of the 4501 students (5.3%) developed IM; 6 months later, 55 of the 238 (23%) met criteria for ME/CFS and 157 (66%) were asymptomatic. 67 of the 157 asymptomatic students served as controls. Students with severe-ME/CFS were compared to students who were asymptomatic at three time points. The former group was not different from the latter group at Time 1 (prior to developing IM) in stress, coping, anxiety or depression, but were different in several behavioral measures and had significantly lower levels of IL-6 and IL-13. At Time 2 (when they developed IM), the two ME/CFS groups tended to have more autonomic complaints and behavioral symptoms while the severe- ME/CFS group had higher levels of IL-12 and lower levels of IL-13 than the recovered group.

Conclusion: At baseline, those who developed ME/CFS had more physical symptoms and immune irregularities, but not more psychological symptoms, than those who recovered.

Source: Leonard A Jason, PhD, Joseph Cotler, PhD, Mohammed F Islam, PhD, Madison Sunnquist, PhD, Ben Z Katz, MD, Risks for Developing ME/CFS in College Students Following Infectious Mononucleosis: A Prospective Cohort Study, Clinical Infectious Diseases, , ciaa1886, https://doi.org/10.1093/cid/ciaa1886

Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients

Abstract:

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.

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).

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.

Source: C (Linda) MC van Campen, Peter C. Rowe, and Frans C Visser. Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. Healthcare 2020, 8(4), 394; https://doi.org/10.3390/healthcare8040394 https://www.mdpi.com/2227-9032/8/4/394/htm (Full text)