Icelandic disease (benign myalgic encephalomyelitis or Royal Free disease)

Ramsay, A. Melvin; Dowsett, E.G.; Dadswell, J.V.; Lyle, W. H.; Parish, JL

doi:10.1136/bmj.1.6072.1350-a

Cited by 15 publications

(21 citation statements)

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“…The participants described that the chronic phase could take many forms such as deterioration, no improvement and varying degrees of improvement. This is in line with previous findings [27, 70, 71]. …”

Section: Discussionsupporting

confidence: 94%

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From good health to illness with post-infectious fatigue syndrome: a qualitative study of adults’ experiences of the illness trajectory

2017

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BackgroundMunicipal drinking water contaminated with the parasite Giardia lamblia in Bergen, Norway, in 2004 caused an outbreak of gastrointestinal infection in 2500 people, according to the Norwegian Prescription Database. In the aftermath a minor group subsequently developed post-infectious fatigue syndrome (PIFS). Persons in this minor group had laboratory-confirmed parasites in their stool samples, and their enteritis had been cured by one or more courses of antibiotic treatment. The study’s purpose was to explore how the affected persons experienced the illness trajectory and various PIFS disabilities.MethodsA qualitative design with in-depth interviews was used to obtain first-hand experiences of PIFS. To get an overall understanding of their perceived illness trajectory, the participants were asked to retrospectively rate their functional level at different points in time. A maximum variation sample of adults diagnosed with PIFS according to the international 1994 criteria was recruited from a cohort of persons diagnosed with PIFS at a tertiary Neurology Outpatient Clinic in Western Norway. The sample comprised 19 women and seven men (mean age 41 years, range 26–59). The interviews were fully transcribed and subjected to a qualitative content analysis.ResultsAll participants had been living healthy lives pre-illness. The time to develop PIFS varied. Multiple disabilities in the physical, cognitive, emotional, neurological, sleep and intolerance domains were described. Everyone more or less dropped out from studies or work, and few needed to be taken care of during the worst period. The severity of these disabilities varied among the participants and during the illness phases. Despite individual variations, an overall pattern of illness trajectory emerged. Five phases were identified: prodromal, downward, turning, upward and chronic phase. All reached a nadir followed by varying degrees of improvement in their functional ability. None regained pre-illness health or personal and professional abilities.ConclusionsThe needs of persons with this condition are not met. Early diagnosis and interdisciplinary rehabilitation could be beneficial in altering the downward trajectory at an earlier stage, avoiding the most severe disability and optimising improvement. Enhanced knowledge among health professionals, tailored treatment, rest as needed, financial support and practical help would likely improve prognosis.Electronic supplementary materialThe online version of this article (doi:10.1186/s12875-017-0614-4) contains supplementary material, which is available to authorized users.

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Section: Discussionsupporting

confidence: 94%

“…Ramsey noted during the outbreaks in the 1950s and later that affected individuals for whom rest was enforced when they fell ill had the best prognosis [69, 70]. This suggests that a faster progression to the turning and upward phases may contribute to less severe disabilities and facilitate improvement.…”

Section: Discussionmentioning

confidence: 99%

From good health to illness with post-infectious fatigue syndrome: a qualitative study of adults’ experiences of the illness trajectory

2017

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“…Myaglic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is one of the most cited medically unexplained symptom illnesses [9]. Myalgic encephalomyelitis (ME) is a post-infectious disease causing malaise, muscle weakness, and nervous system complaints, primarily pain, cognitive dysfunction, and sleep disturbance [10], whereas chronic fatigue syndrome (CFS) is an alternative label introduced in the late 1980s to describe a pattern of symptoms, specifically unexplained fatigue [11]. Other MUS illness categories are symptom-based, such as chronic headaches or unexplained back pain.…”

Section: Difficulties Defining Musmentioning

confidence: 99%

Treating medically unexplained symptoms via improving access to psychological therapy (IAPT): major limitations identified

Geraghty

Scott²

2020

BMC Psychol

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Background: Improving Access to Psychological Therapies is a UK Government funded initiative to widen access to psychological treatment for a range of common mental health complaints, such as depression and anxiety. More recently, the service has begun to treat patients with medically unexplained symptoms. This paper reports on a review of treatment protocols and early treatment data for medically unexplained symptoms, specifically the illness myalgic encephalomyelitis/chronic fatigue syndrome. Main text: A series of seven core problems and failings are identified, including an unproven treatment rationale, a weak and contested evidence-base, biases in treatment promotion, exaggeration of recovery claims, underreporting of drop-out rates, and a significant risk of misdiagnosis and inappropriate treatment. Conclusions: There is a pressing need for independent oversight of this service, specifically evaluation of service performance and methods used to collect and report treatment outcomes. This service offers uniform psychobehavioural therapy that may not meet the needs of many patients with medically unexplained health complaints. Psychotherapy should not become a default when patients' physical symptoms remain unexplained, and patients should be fully informed of the rationale behind psychotherapy, before agreeing to take part. Patients who reject psychotherapy or do not meet selection criteria should be offered appropriate medical and psychological support.

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“…This is certainly not the first time that psychiatrists have sought to claim ownership of CFS. Melvin Ramsay, Honorary Consultant Physician in Infectious Diseases to the Royal Free Hospital, discusses ‘the saga of the Royal Free Hospital’[10], the outbreak of ‘Royal Free Disease’ in 1955 which is often cited in the CFS controversy. He personally examined these patients and states, ‘The Royal Free Hospital outbreak arose explosively from a nidus of infectionpresent in the population of North‐west London .…”

mentioning

confidence: 99%

“…Some 15 years after the outbreak, two psychiatrists, McEvedy and Beard [11], made a retrospective case study analysis and decided that this plus other similar epidemics were nothing other than mass hysteria. Ramsay gives a damning account of their work in his paper [10].…”

mentioning

confidence: 99%

Response to: 'Prolonged fatigue, anxiety and depression: exploring relationships in a primary care sample'

Phillips¹

2000

Aust N Z J Psychiatry

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Icelandic disease (benign myalgic encephalomyelitis or Royal Free disease)

Cited by 15 publications

References 0 publications

From good health to illness with post-infectious fatigue syndrome: a qualitative study of adults’ experiences of the illness trajectory

From good health to illness with post-infectious fatigue syndrome: a qualitative study of adults’ experiences of the illness trajectory

Treating medically unexplained symptoms via improving access to psychological therapy (IAPT): major limitations identified

Response to: 'Prolonged fatigue, anxiety and depression: exploring relationships in a primary care sample'

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