Access to Medical Care for Individuals with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: A Call for Centers of Excellence

Sunnquist, Madison; Nicholson, Laura; Jason, Leonard A.; Friedman, Kenneth J.

doi:10.22606/mcmr.2017.11005

Cited by 21 publications

(34 citation statements)

References 8 publications

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“…ME/CFS patients qualify as a medically underserved population by virtue of geographic and financial barriers to care (42). Both Tidmore et al (42) and Sunnquist et al (43) found: (a) areas of the United States in which there are no ME/CFS specialized care providers, (b) areas in which there are an inadequate number of specialized care providers, (c) areas in which there are an inadequate number of knowledgeable primary care providers, and (d) a national lack of educational opportunities for physicians and medical students to obtain the didactic and clinical experience necessary to diagnose and to treat ME/CFS.…”

Section: The Presentmentioning

confidence: 97%

“…In 2006, then Director of the CDC Julie Gerberding launched a, “Spark Awareness,” campaign for ME/CFS which included a ME/CFS public awareness campaign, and the distribution of a CFS Toolkit for Health Care Professionals to aid in the diagnosis and treatment of ME/CFS (41). However, despite those efforts, the recent studies of Tidmore et al (42) and Sunnquist et al (43) have shown that definitive care of persons with ME/CFS in the United States is still lacking.…”

Section: The Pastmentioning

confidence: 99%

“…ME/CFS patients need more care than patients with many other illnesses (1). Yet, there are regions in the United States where they do not receive any specialized, medical care (43). There is no laboratory test or diagnostic marker for ME/CFS (58).…”

Section: The Presentmentioning

confidence: 99%

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Advances in ME/CFS: Past, Present, and Future

Friedman

2019

Front. Pediatr.

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The forerunner of what is today termed myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) was described by the U.S. Public Health Service in 1934. At the present time, we still do not know its cause and/or how to detect it by routine clinical laboratory tests. In consequence, the pathological nature of ME/CFS has been overlooked and the disease has been stigmatized by being mislabeled as psychosomatic or somatoform illness. Such misperceptions of the disease have led to insufficient research exploration of the disease and minimal to absent patient care. A 2015 Institute of Medicine report on the illness declared ME/CFS a disease affecting up to 2.5 million Americans and chastised the U.S. government for doing little to research the disease and to support its patients. Clinicians who currently treat this disease declare it to be more devastating than HIV/AIDS. A comparison of the histories of the two diseases, an examination of the current status of the two diseases, and a listing of the accomplishments that would be needed for ME/CFS to achieve the same level of treatment and care as currently experienced by patients with HIV/AIDS is provided.

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Section: The Presentmentioning

confidence: 97%

Section: The Pastmentioning

confidence: 99%

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Advances in ME/CFS: Past, Present, and Future

Friedman

2019

Front. Pediatr.

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“…Moreover, access to health care specialists is limited. Sunnquist, Nicholson, Jason, and Friedman (2017) found that of 898 participants, less than half had ever seen an ME or CFS specialist, though 99% of participants were interested in specialist care. Participants cited geographic and financial barriers as most frequently precluding access to specialists.…”

mentioning

confidence: 99%

Dismissing chronic illness: A qualitative analysis of negative health care experiences

McManimen

McClellan

Stoothoff

et al. 2019

Health Care for Women International

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In the US, medical training is inadequate regarding the symptomatology, prognosis, and treatment for myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). As a result, many physicians lack the appropriate level of knowledge about effective methods for ME and CFS symptom reduction and often suggest inappropriate treatments, such as increased exercise or psychiatric services. The authors’ purpose in this study was to analyze negative patient experiences with health care professionals. Patients with ME and CFS who reported experiencing a dismissive physician attitude were asked to detail the encounter via open-ended response on an international, online survey. Participant responses were thematically coded and analyzed using processes outlined by Patton. Emergent themes related to perceived physician attitudes and how they impact patient wellbeing are described and their implications discussed. Additionally, we highlight suggestions for how the health care system can effectively approach this often marginalized patient group.

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“…Patients report difficulties in gaining access to medical care [29] and the vast majority of patients are dissatisfied with the quality of care received [30]. A study concluded: “Dissatisfied patients were significantly more likely to describe delay, dispute or confusion over diagnosis; to have received and rejected a psychiatric diagnosis; to perceive doctors as dismissive, sceptical or not knowledgeable about CFS [..]” [31].…”

Section: Due To the New Definition Of “Me/cfs” The Four Recommendamentioning

confidence: 99%

Dutch Health Council Advisory Report on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: Taking the Wrong Turn

Twisk¹

2018

Diagnostics

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Recently, the Dutch Health Council published their advisory report on Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) which is meant to determine the medical policy with regard to ME in the Netherlands. The Health Council briefly discusses several diagnostic criteria and proposes to use new diagnostic criteria for “ME/CFS” in research and clinical practice in the future. The advisory report then summarizes organic abnormalities observed in the last decades and concludes that “ME/CFS” is a “serious, chronic, multisystem disease”. According to the Health Council there are no curative treatments for “ME/CFS”, due to lack of knowledge, but specific medication could bring symptomatic relief. The Health Council recommends conducting more research, to (re)educate medical professionals about “ME/CFS”, to appoint three academic expertise centres, which will install a care network for patients, and to fairly judge the limitations (disability) of patients when they apply for a disability income, medical aid and care. The advisory report was welcomed by many patients, because it puts an end to the dominance of the (bio)psychosocial explanatory model and seems to offer a perspective of improving the situation of patients. However, the starting point of the advisory report, a new definition of “ME/CFS”, will have serious (long-lasting) consequences for patients and researchers.

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Access to Medical Care for Individuals with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: A Call for Centers of Excellence

Cited by 21 publications

References 8 publications

Advances in ME/CFS: Past, Present, and Future

Advances in ME/CFS: Past, Present, and Future

Dismissing chronic illness: A qualitative analysis of negative health care experiences

Dutch Health Council Advisory Report on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: Taking the Wrong Turn

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