Hope, disappointment and perseverance: Reflections of people with Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis participating in biomedical research. A qualitative focus group study.

BACKGROUND: The Clinical Understanding and Research Excellence in ME/CFS group (CureME) at the London School of Hygiene & Tropical Medicine has supported and undertaken studies in immunology, genetics, virology, clinical medicine, epidemiology and disability. It established the UK ME/CFS Biobank (UKMEB), which stores data and samples from three groups: participants with ME/CFS, Multiple Sclerosis (MS) and healthy controls. Patient and public involvement have played a central role from its inception. AIM: To explore the views of participants with ME/CFS and MS on CureME research findings, dissemination and future biomedical research priorities. METHOD: Five ME/CFS and MS focus groups were conducted at two UK sites. Discussions were transcribed and analysed thematically. RESULTS: A total of 28 UKMEB participants took part: 16 with ME/CFS and 12 with MS. Five themes emerged: (a) Seeking coherence: participants' reactions to initial research findings; (b) Seeking acceptance: participants explore issues of stigma and validation; (c) Seeking a diagnosis: participants explore issues around diagnosis in their lives; (d) Seeking a better future: participants' ideas on future research; and (e) Seeking to share understanding: participants' views on dissemination. Focus groups perceived progress in ME/CFS and MS research in terms of "putting together a jigsaw" of evidence through perseverance and collaboration. CONCLUSION: This study provides insight into the emotional, social and practical importance of research to people with MS and ME/CFS, suggesting a range of research topics for the future. Findings should inform biomedical research directions in ME/CFS and MS, adding patients' voices to a call for a more collaborative research culture.

The relationship between prior psychiatric disorder and chronic fatigue: evidence from a national birth cohort study.

BACKGROUND: Increased rates of psychiatric disorder have previously been reported in those diagnosed with chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME), although the direction of causation in this relationship has not been established. We aimed to test the hypothesis that individuals with self-reported CFS/ME have increased levels of psychiatric disorder prior to the onset of their fatigue symptoms. METHOD: A total of 5,362 participants were prospectively followed with various measures of personality, psychiatric disorder and fatigue levels collected over the first 43 years of their life. CFS/ME was identified through self-report during a semi-structured interview at age 53 years. RESULTS: Thirty-four (1.1%) of the 3,035 subjects assessed at age 53 years reported a diagnosis of CFS/ME. CFS/ME was more common among females, but there was no association between CFS/ME and either social class, social mobility or educational level. Those with psychiatric illness between the ages of 15 and 36 years were more likely to report CFS/ME later in life with an odds ratio (OR, adjusted for sex) of 2.65 [95% confidence interval (CI) 1.26-5.57, p=0.01]. Increased levels of psychiatric illness, in particular depression and anxiety, were present prior to the occurrence of fatigue symptoms. There was a dose-response relationship between the severity of psychiatric symptoms and the likelihood of later CFS/ME. Personality factors were not associated with a self-reported diagnosis of CFS/ME. CONCLUSIONS: This temporal, dose-response relationship suggests that psychiatric disorders, or shared risk factors for psychiatric disorders, are likely to have an aetiological role in some cases of CFS/ME.

Psychoneuroimmunology of stroke.

There is now considerable evidence from both experimental and clinical studies that immune and inflammatory processes can contribute to the onset of stroke and the neurologic and psychologic outcomes. Several specific therapeutic targets have been identified that may significantly improve the devastating impact of stroke.

Cognitive recovery from "persistent vegetative state": psychological and personal perspectives.

This study reports on the case of a young woman who, at the age of 26, developed a severe encephalomyelopathy and was in a vegetative state or minimally conscious state for 6 months. She showed a sleep-wake cycle, but no evidence of cognitive functioning. Six months after her illness, she began to respond to her environment and eventually returned home to the care of her parents, with regular periods of respite care in a home for people with severe physical disabilities. She remains in a wheelchair with a severe dysarthria and communicates via a letter board. Two years after her illness, staff at the home requested an assessment of her cognitive functioning. On the WAIS-R verbal scale and the Raven's Progressive Matrices, the woman's scores were in the normal range. So too were her recognition of real versus nonsense words and her memory functioning (apart from a visual recognition memory test which was in the impaired range). Although she enjoyed the tests, she became distressed when asked about her illness and previous hospitalization. She was reassessed 1 year later, when there were few significant changes in her test scores but she could talk about her illness and hospitalization without becoming distressed. She was angry, however, about her experiences in the first hospital. Further tests suggested good executive functioning. In short, this woman's cognitive functioning is in the normal range for most tasks assessed, despite a severe physical disability and dysarthria, and despite the fact that she was vegetative for 6 months. Although some recovery following 6 months of being vegetative/minimally conscious is not unknown, it is rare, particularly for those with non-traumatic injuries, and the majority of people similarly affected remain with significant cognitive deficits. This client has, by and large, made an almost complete cognitive recovery. She feels positive about her life now and says the formal assessment showed people she was not stupid and this made her happy. The paper concludes with the young woman's own comments and views about what happened to her and her present feelings.

The binge eating and emotional change in a patient with postinfectious encephalomyelitis.

Postinfectious encephalomyelitis is a kind of demyelinating disease with pathological characteristics and a monophasic clinical course. Herein, we describe a patient who had the symptoms of binge eating, fatigue, memory impairment, hypotalkativeness, hypoactivity, lethargy, incoherent speech, dysphoric mood, and episodic disorientation. Only elevation of CSF protein was noted upon initial admission; however, blurred vision of the eyes developed progressively after discharge. A magnetic resonance image (MRI) scanning of the brain demonstrated scattered lesions of low signal intensity on T1-weighted images and high areas on T2-weighted images in the left thalamus, bilateral hypothalamus and midbrain. The findings of MRI image, CSF, and clinical course all suggested postinfectious encephalomyelitis. After a treatment of prednisolone, a follow-up MRI revealed evidence of improvement, and the binge eating also improved.

Lilliputian and negative hallucinations in a patient with probable encephalomyelitis disseminata.

A patient who showed Lilliputian hallucinations and negative hallucinations in the course of probable disseminated encephalomyelitis is described. At the age of 14 years the patient experienced a transient, flaccid paresis of the right leg. Eighteen years later she suddenly developed paranoid-hallucinatory symptoms accompanied by atypical visual hallucinations. She did not recover completely and until now she has suffered at least once every year from an episode with psychotic symptoms. During the most recent of these episodes, MRI revealed several disseminated supra- and infratentorial foci in the brain. Two of them, in the left cerebral peduncle and in the left occipital white matter are discussed as the cause of her visual hallucinatory symptoms.

[Clinical forms of acute herpetic infections of the central nervous system in adults]. / Klinicheskie formy ostrykh gerpeticheskikh porazhenii tsentral'noi nervnoi sistemy u vzroslykh.

The authors describe the course of herpetic encephalitis in 52 patients aged 16 to 64 years. Five types of the initial manifestations of herpetic infection of the CNS were revealed. In 44.3% of cases the disease started from the general cerebral symptomatology and consciousness disturbance; in 13.6% it started in a brain stroke-like manner followed by the development of the comatose status; in 13.6% of cases from memory disorder and unmotivated actions; in the same percentage of cases, the disease onset was marked by the dominance of dizziness, diplopia, ataxia and central hemiplegia ; in 15.9% the disease started from pains in the stomach, loin and lower limbs. Hemispheric and pseudotumorous stem encephalitides (48.1 and 13.6% respectively) were predominant; in 25% meningoencephalitides and in the remainder, encephalomyelitis running their course in the form of disseminated encephalomyelitis (5.7%), focal myelitis (5.7%) or opticomyelitis (1.9%). The data presented attest to the pleomorphism of the clinical picture of herpetic lesions of the CNS.

Features of Coxsackie B virus (CBV) infection in children with prolonged physical and psychological morbidity.

A retrospective study of the clinical features in 39 children who were investigated for evidence of Coxsackie B virus (CBV) infection is reported. Eighteen children were found to have serological evidence of infection. An extensive range of features was elicited in both seropositive and seronegative patients, most children complaining of abnormalities referable to muscle and, in particular, of weakness and easy fatiguability. Children with evidence of CBV infection were significantly more likely to belong to social classes I and II, to have relatives with serological evidence of CBV infection, and to show certain dysphoric features as well as to complain of sore throats. The relationship between CBV infection and 'myalgic encephalomyelitis' or 'post-viral syndrome' is discussed, and it is suggested that these descriptions are inappropriate given our current knowledge, and inadequately describe the clinical features seen in the children under study. An alternative description, 'fatigue-dysphoria syndrome' is proposed.

Post-infectious encephalomyelitis: some aetiological mechanisms.

The possibility that acute disseminated encephalomyelitis (ADEM) and epidemic myalgic encephalomyelitis ('epidemic neuromyasthenia') may share a common pathogenesis is examined and many factors common to the two diseases are described. It is suggested that further study of ADEM may help our understanding of epidemic myalgic encephalomyelitis.