Journal of IiME Volume 2 Issue 1 www.investinme.org Experiences of Care in Institutions with Severely-Ill People with ME (continued) phenomena of changing symptomology over time. ( Streeten & Bell, 1998; Rowe, 2002; Peckerman, Lamanca & Dahl, 2003; Khan, Spence & Kennedy, 2003; Khan, Kennedy & Spence, 2004; Spence & Steward, 2004; Kennedy, Spence & McLaren, 2005). Clinical presentation of ME is a condition with large disturbances in the ability to restore the physiological balance. This means prolonged recovery time with subjective symptoms and objective loss in physical and mental functions after activity and stimulation. It depends on the individual how much can be tolerated, and the capacity varies within the course of the illness. The capacity can also vary considerably within one day. Patients benefit from reducing activities to a level which, from experience, can be tolerated without provoking symptoms, and therefore need to be protected from stimuli that provoke symptoms. Increased recovery time makes it necessary to rest after activities and stimulation so that symptoms ease and physical and mental functioning is slowly improved. Problems with circulation make it furthermore necessary to lie down a lot; completely flat in severe cases. ME patients need help in stabilising their condition despite the severity of the illness. When activity limitations are exceeded, there is an increase in symptom intensity, increasing deterioration and ever increasing recovery time. The illness has from experience an inherent tendency for slow improvement over months and years as long as it is not provoked. The best prognosis is for young people who are allowed to rest from the start of their illness, for grown up married or for co-habiting couples or for the ones who have marked improvement during the first 12-18 months. The World Health Organisation classifies ME together with Post Viral fatigue Syndrome (PVFS) as a neurological illness (G93.3, ICD-10), but have not given criteria. The character of the illness is described in the literature, often in the form of symptom lists or set of criteria (Hyde, Goldstein & Levine, 1992; Kreyberg. 1999). The knowledge of the nature of the illness is spread considerably from person to person via formal or informal networks among people with personal experience, also within doctors. The illness is difficult to understand, and what one sees can be difficult to intermediate because connections between cause and effect often are the opposite compared to what one sees in other illnesses. The limitations of the illness are seen clearer after activity and stimulation than beforehand, and there are no adequate concepts to describe the subjective symptoms. Those who try, will often be interpreted in the psychosomatic model of understanding, either are ill themselves or speak for the ill. One of the reasons why ME is still considered a somatic illness is that it can develop as a direct consequence of Invest in ME (Charity Nr. 1114035) another physical illness or trauma. It can also begin acutely after a latency period of several months or years after exposure, possibly in connection with a new unrelated illness episode. It is easiest to diagnose acute, fulminant cases and cases that occur during epidemics. In a fully developed illness the presentation is the same despite the triggering event or the way in which the illness started. ME can therefore be seen as a type of general reaction. The pattern of increasing loss of physical and mental functioning after activity is especially noticeable with the most severe cases, whose reaction most likely shows up straight away. Upon recovery the reaction can be delayed or overruled. Even if the ill person is careful the reaction can happen after hours or days, or even after a longer period, and one has to take this experience into account. The reaction can be abrupt, dramatic and long lasting. Activity level can therefore be increased only in small steps within periods of improvement. If there is a reaction the activity level has to be down regulated straight away. The ill person will feel beforehand if there generally are energy reserves and will spontaneously increase their activity level, expose themselves to stronger stimulus, try new food and more. So the ill person must not be encouraged or stimulated but benefits from adjustment. Observation over time is necessary if one wishes to avoid exposing these very vulnerable patients for lengthy, painful and potentially harmful investigations which can neither confirm nor rule out the diagnosis with today’s routine examinations. At best one achieves ruling out another illness which is only necessary if there is clinical suspicion (Holmes, Kaplan & Ganz, 1988). However, suspicion of another illness comes up often because of the changing symptom flora, where new symptoms show up constantly. It is therefore important that healthcare professionals and others who take care of such patients have certain knowledge of the everyday presentation of the illness. The following sums up a quick survey which was carried out in the autumn of 2006, motivated by the upcoming nursing home reform in Oslo and knowledge of the case of what is officially on offer for ME patients being taken up by parliament (Dåvøy, 2007). Many seriously ill ME patients are cared for at home by their families, often for years, without essential support, respite care or guidance. It is mainly patients themselves and their families who have the knowledge around this area and it is spread via distinct networks. The illness presents itself more or less the same despite sex, age and over national borders, and is most easily recognised in serious cases, those in need of care. For this reason one could expect experiences in (continued on page 11) Page 10/34
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