How to manage adequate care for Severe Myalgic Encephalopathy (ME/CFS) patients

…unable to take part in a conversation, call for help or look after oneself…

Many seriously ill ME patients are cared for in their homes by their families, often for years, with no substantial support, respite care or guidance. The know-how sits mainly with the patients themselves and their families, and is spread via various networks.

Here follows a quick survey conducted during the autumn of 2006, motivated by the upcoming nursing home reform in Oslo, and knowing that public resources available for ME patients was on Parliament’s agenda (Dåvøy, 2007).

Source: https://totoneimbehl.wordpress.com/skjemainfo-om-me-g93-3/

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Experiences with Severe ME in Institutions

Sidsel Elisabeth Kreyberg. Institutt for allmenn- og samfunnsmedisin, Universitetet i Oslo. 2007

This is the authorized translation of an article that was originally published in Norwegian in the Norwegian Journal of Nursing Research, Norsk Tidsskrift for Sykepleieforskning, 2007; 9: 2, 16-26

ABSTRACT

Caring for seriously ill ME-patients: A small survey

Norwegian medical professionals generally lack the knowledge and experience needed to diagnose and provide advice on how to manage Myalgic Encephalopathy. The subject is also absent from the education of nurses and other health workers. Experience must, for now, be accepted as key to understanding and managing this largely unexplained disorder.

Seven nursing homes here outline which extra resources would be necessary to adequately treat and care for seriously ill ME-patients, according to their experience. Apart from suggesting specialised units, the answers comprise technical adjustments to provide maximum protection from sound and light, advanced ventilation systems, flexible kitchen facilities and individually adapted dietary regimens; medical advisors; and a carefully selected and limited number of carers to look after the ME-patient around-the-clock. Stability, predictability and consistency are necessary for the patients to cope, and a small team will enable the carers to cooperate, be alert to signs of adverse reactions, and take adequate measures to prevent deterioration. Routines for debriefing staff working with patients in a permanent crisis-like condition was called for; and extra time and resources to support relatives that assist in planning and caretaking, speak on behalf of the patient, and are crucial in providing know-how – all of which necessitates increased staff in general.

Key words

English: Myalgic encephalopathy, chronic fatigue syndrome, nursing, rehabilitation, experience

INTRODUCTION

Myalgic Encephalopathy, ME, is discussed more often in the media than in medical or health sciences curriculum literature. The media often refer to this condition as “Chronic Exhaustion Syndrome”, “tiredness syndrome” or “energy depletion”, which are more or less vaguely defined conditions of long standing exhaustion or tiredness (fatigue) (Lindal, Stefansson & Bergmann, 2002; Jason, Helgerson & Torres-Harding, 2003; Kennedy, Abbot & Spence, 2004).

In addition to subjective symptoms, which are sometimes present and sometimes not, such as self-reported fatigue, nausea and malaise, ME is characterized by reduced physical and mental stamina or endurance, otherwise known as activity intolerance or increased fatigability (objective fatigue). These patients are thus exercise intolerant (Hyde, Goldstein & Levine, 1992).

In addition they are different from other “energy depleted” patients in that they at times experience disabling intolerance of sensory stimuli, markedly reduced tolerance for alcohol, medical compounds and various foods, disturbances in autonomous, hormonal, neurological and immunological functions, disturbed body rhythms, and pains that are not alleviated by treatment.

In the fully developed illness, symptoms arise from all organs and organ systems. The symptom flora is constantly changing. A lack of causal explanation for this gives rise to psychiatric interpretations. Recent studies, however, show changes in the peripheral circulation which to some extent could explain the phenomenon of changing symptomatology 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).

Clinically, ME is a condition with notable disturbances in the ability to restore physiological balance. This means prolonged recovery time following activity and stimulation, with increase in subjective symptoms and objective decrease in physical and mental functional ability. The tolerance level varies from case to case, and individual capacity varies within the course of the illness. The capacity may also vary considerably within a day. Patients benefit from reducing activities to a level which, from experience, can be tolerated without provoking symptoms, and they therefore need to be actively protected from symptom provoking stimuli.

Increased recovery time necessitates rest in a shielded environment in the aftermath of activities and stimulation for symptoms to abate, and for physical and mental functioning to slowly recover. Problems with circulation also force the patients to lie down a lot; completely flat in severe cases.

ME patients need help in stabilising their condition regardless of illness severity. When tolerance limits are challenged, there is an increase in symptom intensity, increase in fatigability and further increase in the already prolonged recovery time. Apparently there is an inherent tendency for slow improvement over months and years as long as the illness is not provoked. The prognosis is the most favorable among young people who are allowed to rest from the onset, married or co-habiting couples and the ones who show marked improvement during the first 12-18 months.

The World Health Organisation classifies ME together with Postviral fatigue Syndrome (PVFS) as a neurological disorder (G93.3, ICD-10), but has not given illness criteria.

The clinical picture is described in the literature, often by way of lists of symptoms or sets of criteria (Hyde, Goldstein & Levine, 1992; Kreyberg, 1999). Knowledge of the nature of the illness is mainly spread orally via formal and informal networks among people with personal experience, also within the medical profession.

The illness is difficult to understand, and what one sees can be difficult to intermediate because connections between cause and effect seem contrary to what one sees in other illnesses. The limitations imposed by the illness are more clearly apparent after activity and stimulation than beforehand, and an adequate vocabulary with which to describe the subjective symptoms is lacking. Those who try to explain, will often be interpreted in a psychosomatic model of understanding whether they are ill themselves or speak on behalf of the ill.

One of the reasons why ME is still considered a somatic illness is that it can develop directly following another physical illness or trauma. Onset may also be acute after a latency period of several months or years following exposure, sometimes in connection with a recent, unrelated illness episode. Acute full blown cases are the easiest to diagnose as are cases that occur during an epidemic. In a fully developed illness, the presentation is the same regardless of the triggering event or mode of onset. ME can therefore be regarded as a type of general reaction.

The pattern of increasing loss of physical and mental functioning after activity is especially noticeable in the most severe cases, in which a reaction is likely to show up immediately.

Upon recovery, there may be a delay, or the reaction may be overruled. Even if the patient is careful, a reaction may occur after hours or days, or even after a longer period, and this experience must be taken into account and dealt with.

The reaction can be abrupt, dramatic and long lasting. The activity level should therefore only be allowed to increase by small steps within periods of improvement. If there is a reaction, the activity level must be reduced at once. The patients will know beforehand when an energy reserve is generated and will spontaneously increase their activity levels, expose themselves to stronger stimuli, try new types of food, and so on. Thus, the patient must not be encouraged or stimulated, but will benefit from various enabling and supportive measures.

Observation over time is necessary to avoid exposing these very vulnerable patients to lengthy, distressing and potentially harmful diagnostic procedures, which are neither designed to confirm nor exclude the diagnosis when using current routine examinations. At best, one achieves ruling out other illnesses, which is only necessary when there is due clinical evidence of such illness (Holmes, Kaplan & Ganz, 1988). However, suspicions of other illnesses often arise because of the changing symptom flora, with new symptoms appearing with time. Healthcare professionals and others who meet with these patients should therefore have some knowledge of the illness presentation from day to day.

Here follows a quick survey conducted during the autumn of 2006, motivated by the upcoming nursing home reform in Oslo, and knowing that public resources available for ME patients was on Parliament’s agenda (Dåvøy, 2007). Many seriously ill ME patients are cared for in their homes by their families, often for years, with no substantial support, respite care or guidance. The know-how sits mainly with the patients themselves and their families, and is spread via various networks.

The illness presentation is more or less the same regardless of sex and age, and across countries and continents. It is most easily recognisable in severe cases in need of full time care. For this reason, one could expect experiences in institutionalised care situations to be fairly similar as well, even with a relatively restricted patient material.

A SMALL SURVEY

A total of eight institutions which were known to have taken in a severely ill ME patient, were contacted by telephone. The ward nurse or someone else in the team around the patient would receive the call. They were told about the objective, which was to obtain an enunciation from a person with “hands-on”- experience with a severely ill ME patient in an institution, on how one could provide adequate services in the future for this patient group, without taking into account the existing restrictions in resources. It had to be stated quite explicitly that “grass roots” experience in particular can be at least as important as recommendations and therapy suggestions given by professionals who lack knowledge of the care situation and what it involves. The departments themselves decided who would formulate the reply. The following question was asked: Which added resources are needed for you to be able to offer adequate care for a seriously ill ME patient? State reasons for your answer based on your own experience.

Seven of the institutions gave written answers by e-mail, post or both. The eighth claimed that the patient’s ME was not the reason for the need of care, and that their experiences were irrelevant to our study. One institution asked that the question be provided in writing, but had reformulated it when they gave their answer. This didn’t affect the outcome, and was only taken into consideration. In three instances, single statements were elaborated upon after renewed contact.

The study population consisted primarily of five women and two men with severely disabling ME. One patient lived in the parents’ home, but was cared for by a permanent staff from a nearby institution. One patient lived in a care home connected to a nursing home. One of the institutions was a rehabilitation center that admitted patients on a short term basis, with a clear aim of improvement during the stay. In this case, the patient was admitted because of a lack of other options. One patient stayed in a short term rehabilitation department within a nursing home. The rest stayed in ordinary nursing homes.

Some of the institutions had no previous experience of ME, whereas others had experienced several cases with various degrees of illness severity. The extent of this material is not known.

The relatives were to a various extent involved in the daily care, and acted partly as advisers. In some places the staff also took on a supportive role toward relatives.

RESULTS

The answers are particularly concentrated on economic means to alter the physical environment, increased staff in general, individually adapted feeding procedures, and extra time. There was a preference for a permanent team consisting of a limited number of elected caregivers, and professional guidance both before and during the stay. Some also expressed concern regarding how to better ensure the well-being of relatives and staff after contact with patients in a permanent crisis. Some also mentioned the special problems that arise when patients start getting surplus energy, thereby touching upon rehabilitation issues.

Screening against sound

Only a few could accommodate the need for complete sound proofing. Suggestions comprised a private room in an area with the least noise, a sound proofed room, a sound proofed door or a separate screened ward. In one case there was a built in sound proofed room within a care home connected to the nursing home.

Common dining areas were too noisy. Even patients that would be physically able to get to the dining area would need to have their food brought to the room.

Several pointed out how the staff should perform tasks quietly and be conscious of their voice level, use equipment such as plastic utensils, finish as quickly as possible, avoid talking when not strictly necessary, possibly use written messages instead of spoken words, and make sure that maintenance work and repairs were conducted in such a way that the patient was not burdened.

Several reported that tolerance for sound and speaking improved as the condition improved and that the patients then increasingly initiated conversations with the staff, and would expose themselves to sound from a radio or sing to themselves.

Screening against light

The patient’s need for complete darkness interfered with caring procedures. Several would have installed lights that could be dimmed. In one ward, a cassette roller blind in addition to double curtains was suggested in order to avoid a gap between the window and screening.

Comfort lying down

For patients who spend most of the time in bed, one institution pointed out the special need for a good bed/mattress.

Temperature and air quality

One institution which took in several ME patients, pointed out that ordinary ventilation systems are inadequate. The patients need to maintain an even temperature and may suffer from the heat in summer. In order to obtain sufficient ventilation, an indoor climate improver system would be necessary for the benefit of both patients and caregivers, especially where there was extra sound and light proofing.

Kitchen, diet and feeding

Customised diet was perceived somewhat differently depending on the existing routines and reflected to some extent the knowledge of, or acknowledgment of, problems with food intolerance in ME. If a patient deteriorates due to certain foods, it may be difficult to detect.

In one instance, a special diet would be provided only if there was a doctor’s statement. However, ordinary foods such as milk, sugar and flour, was frequently avoided. Even this meant extra work.

Some found cooperating with a dietitian quite natural, and adapted the diet according to the patient’s wishes. Others felt the need for a nutritionist and the opportunity to order special food.

To find sufficient time for feeding was, for most of the participants, seen as the largest problem. When all food was in liquid form, the task was simpler. The need for extra time for feeding was seen throughout as a resource problem which had to be solved by adding extra staff elsewhere.

Regarding adaptations in the physical surroundings, some pointed out the need for private kitchen facilities to attain more flexible solutions for the patient, and to enable relatives to cook for themselves. This could ease their role as supporters and at the same time relieve the staff.

Staff

In addition to the specific technical adaptations, extra human resources should be provided. It was considered beneficial if a stable team with as few members as possible could cover the ME patient’s needs throughout the day and night. “[…] all care such as washing, dressing, changing sheets, feeding, bed-pan and so on, takes at least three times as long as usual.” This consumes so much of the common resources that increased staff is required in the ward as a whole.

Also a limited number of staff involved with each ME patient was considered beneficial because “it is difficult for the patient to relate to too many members of staff”. Caregivers in full time positions were preferred in order to reduce the size of the team.

A limited number of caregivers was preferred even so that they could learn to identify the warning signs of deterioration – “for instance sleep, chest pain, blurred vision, runny eyes, headache, forehead pressure, sweaty palms, cold extremities, tingling of toes and fingers, tone of voice” – and take precautions. The caregivers should also be able to act as the patient’s spokesperson. ME patients have to mobilize to be able to speak and cannot always speak when it suits others.

Predictability

Predictability and the opportunity to be as well prepared as possible for what is going to happen and when, is of immense importance for the ME patient to be able to cope with every day living. Regular ambulating nursing care in the home, therefore, works to their detriment To be able to accommodate the patient’s needs “physically, psychologically and socially, a certain understanding of the diagnosis (its implications) is required”, as one of the caregivers puts it. For example, to know what the consequences are of being a few minutes late. “We give the task priority and rearrange other tasks so that we can appear on time for the ME client. We know the consequences if we don’t comply, that the client becomes worse and will, for example, have to rest a day or two afterwards to recover.” Another explains how deterioration was triggered by the cleaning staff being five minutes late.

The two institutions which followed the detailed instructions from relatives, and indulged the patient, had seen that the patients improved. One head nurse expressed surprise at how little extra work it created on the whole that staff showed up at designated times and performed all the tasks exactly the way the patient advised – even though the patient could also call them at any time outside the agreed schedule.

Several called for information well in advance of the patient’s arrival on the ward, while others felt they had had sufficient information from relatives. Several emphasized the usefulness of important contacts within the patient’s network. Some, on the other hand, called for professional guidance, courses and seminars. An ambulant specialist team was suggested, possibly regional ME wards.

Interaction

Encouragement and stimulation can have the opposite effect of that which is intended. The patient wants to, but cannot, and becomes frustrated over coaching – however well intended it may be: “It is important when advising the staff connected to the ME patient that one has to think differently from how one thinks regarding other patients in the ward, for example patients in rehabilitation, long term patients, and others.”. With improvement usually follows an increasing need for stimulation and a great need to talk. “Let the patient make contact without him being bombarded with impressions …” One can, for example, “respond with written notes or simple nods”. In other words: Let the initiative be with the patients themselves.

The staff often would become worn out in a different way than they were used to. It could have to do with all the adaptations they had to carry out, the special considerations they had to bear in mind all the time, along with being confronted with the patients’ problems of accepting the diagnosis, their frustration of not being able to do as much as they would like to, the set backs and so on.

It was pointed out that a care plan was important to ensure that everyone gave the same treatment. Caregivers who were to be part of the team had to be carefully chosen:

“The medical follow up […] is important, but the personality of the caregivers […] is equally important and has to be appraised accurately. One should have both nurses and nursing assistants on the team, but it is not necessary to have only professional staff as long as they […] understand the illness and are willing to take on the challenge. The illness and the symptoms can seem challenging, and the staff must be well prepared and in a position to handle this in a confident manner, both with the patient and with each other. It demands confident people who can help the patient calm down, and who can see the fluctuations that the illness brings with it. The behavioural pattern can be difficult to handle when the care is very detailed and it is the patient who decides what to do, when, and how. Any negotiation of this (with the patient, added by writer) can negatively impact the illness development. It is important that the chosen staff members are willing to be part of the resource team since this is demanding ‘one on one’ care. […]

The staff also has the need for ‘debriefing’. This is not common in a nursing home and there should also be allocated a way and time for this. “

The role of Relatives

ME is a long term, demanding condition, and time consuming for relatives. All those involved must endure considerable uncertainty, not only for the future, but for the consequences of every single effort – the ones performed on a daily basis, as well as the extraordinary ones. The risk of a relapse is always present, and ME patients in poor condition have very narrow margins. In this context, the relatives were mostly seen as a resource. They were often able to guide and instruct the staff, both beforehand and during the stay, and to various degrees relieve the staff. They were also more accomplished at registering deterioration, and would act as a spokesperson. Some of them act on behalf of the patient in every respect.

On the other hand, the staff expressed a desire for sufficient time and resources to enable them to look after the relatives better: “As young people are frequently involved here, it is important that one also has time for the family […]. The situation for the whole family becomes very insecure, both due to the fact that, at present, there is so little knowledge of the illness itself, how the illness runs its individual course, and what timescale we are dealing with.”

COMMENT

The results confirm the expectation of relatively similar answers, even though all the issues were not addressed by everyone. The task made room for suggestions and reflections, and the elaboration on the given reasons also varied. Some points of view were expressed already during the first contact, and are included to complete the picture.

All the participants emphasized adjustments to the buildings, especially with regard to shielding and kitchen facilities, and the need for professional guidance. A few also called for a crisis team for conflict solving and “debriefing” of the staff. Several pointed out the need for carefully selected staff in full time positions, and extra time, because ME patients put demands on staff resources both physically and psychologically. To be able to prioritise ME patients, extra staff would be necessary in order to complete chores elsewhere in the ward. An alternative solution would be separate ME wards. Even though relatives were seen as a resource, some also saw the need to be able to look after the relatives better, including family members who were not directly involved in the care.

Some of the differences in the answers are due to varying preconditions regarding the physical state of the institution, and regarding existing competence. Some are also due to different aims regarding the stay, and the treatment environment in general. Those working in rehabilitation wards differed from those in the nursing wards, mainly with respect to expectations of results.

Apparently, frustration regarding the illness was expressed more clearly among the ill themselves and among caregivers in those institutions that sought improvement by actively mobilizing the patient. Even though the expectation is improvement over time with ME, the improvement is usually very slow with major or minor relapses when limits are exceeded, or with extra strain outside the patient’s control such as being moved from one place to another, an infection or a sudden loud noise. An approach with preset goals is contradictory to the nature of the illness unless the aim is stabilisation, which can be achieved most readily by shielding against sensory input, and by limiting activity to a level the patient can tolerate without bringing on a reaction. At the same time, adaptive measures need to be implemented to enable activity within the tolerance limit. The concept is in other words opposite of the usual rehabilitation, where active or passive mobilization is accompanied by tolerance levels being challenged in order to get results.

With stabilisation over time, the tolerance level increases unevenly in different areas. There is generated a palpable energy reserve, and this should be spent in small doses with pauses in between so that that there is sufficient time for a possible reaction to be registered. Improvement starts with the patient’s own preconception of what can be tolerated, and then new challenges are taken on gradually with a stepwise adaptation to light and sound, new foods, elevated position and so on, and active movement of muscles and joints, preferably without exertion to begin with. Muscle fatigability is considerably more noticeable with movement that goes against gravity than with it, a phenomenon that was described already in 1934 (Gilliam, 1938). Adjustments to the environment to support the current level of ability, and personally tailored activity tasks, can be useful so that the patient doesn’t spontaneously increase the level of activity too soon and for too long during periods of improvement. Passive mobilisation and/or massage is justified to the extent it increases well being. ME patients experience well being with activity within tolerance limits and do not need encouragement. They rather need to be told to take rest breaks before the performance limit is reached so that they don’t deliberately postpone the reaction, with the increase in symptoms and utterly lengthened recovery time that will ensue.

The impression was that rehabilitation wards aimed at finding an optimal balance between pushing the limits carefully, and thereafter stabilising with rest, but found it difficult to calculate the length of the necessary rest, or estimate the optimal work load. The result was frustration with each set-back that followed, both among patients and caregivers. It is possible that some of the heightened expectation is created by the faulty notion that “micro-training” is favourable with ME. Such an approach is contradictory to all experience, and is based on a concept of fatigue being caused by an underlying lack of motivation, as is postulated in the so called Oxford criteria (or similar psychosomatic interpretations) that form the basis for most of the studies concluding that GET (Graded Exercise Therapy) or CBT (Cognitive Behavioural Therapy) are beneficial for “chronic fatigue syndrome” (Kreyberg, 2004a). Most of these studies use illness criteria that omit activity intolerance, sleep disturbances, headache and other typical ME-characteristics. Furthermore, nothing is said about what characterizes the drop outs. These studies are in other words irrelevant to ME.

CBT and GET are activating therapies which do not address the ME patient’s tolerance limits in any other way than by leaving the patient free to decide whether to participate or not. The therapy is offered as a treatment option and thereby caters to the patient’s perception of being ill. Such recognition brings hope after years of rejection and disbelief, which many have encountered within the health care system and/or family. Studies which show positive treatment outcomes do not, under any circumstances, include the severely ill patients, who will not be able to attend.

The principles of ME treatment are the same regardless of illness severity, but the patient’s performance level and options for activity and participation differ, and adaptive measures should differ accordingly. It has to be understood that the condition can change within hours or days from being self-supporting in several areas to demanding fulltime care, and even one with a high degree of autonomy can be totally exhausted during parts of the day, unable to take part in a conversation, call for help or look after oneself.

A severely ill patient is extremely vulnerable and unstable, and even minimal exertion can trigger a reaction. Even small details will influence everyday life in either a positive or negative direction, both for the patient and the caregivers. This can be both demanding and rewarding. It is a big step forward when the patients can do something themselves, for example lift a glass up to the mouth or type in a telephone number. For the patient, the sensory apparatus is spared by not needing a helper in the room. But the glass has to be kept at the right height, not be too heavy, and so on. The care has to be creative, and the caregivers must learn from one another.

Thus, rehabilitation and care go hand in hand, even for the most severely affected. Regarding both nursing tasks and the implementation of adaptive measures, the caregiver has to become conscious of the illness’s restricting pattern, which is unlike any other illnesses – and this awareness must be applied at such a level of detail that it is difficult to comprehend. In addition, one has to be practically odour free, noiseless and invisible.

The caregivers should develop a heightened state of consciousness so that the patient can be spared the energy cost of giving instructions. They should do their work, and then leave the room because every attendance drains the mental capacity of the patient. On the other hand, it can be helpful if someone is present during severe and constant symptoms because it conveys a sense of security and some diversion.

It can be impossible to hold a tooth brush, fork or pen or sustain a telephone conversation, yet still be possible to write a message on the mobile phone if the hand is allowed to rest on support. Such apparent inconsistencies in what the patient can and can’t do, are none the less consistent with a characteristic pattern, but often become a source of conflict amongst the staff. These conflicts should be acknowledged early and solved by someone who is familiar with the nature of the illness.

Improvement requires more stimulation and contact and the staff easily get hijacked when the patient’s capacity increases. The capacity to speak is greater than the capacity to take input from others or enter into a dialogue, which demands switching attention from outgoing to incoming information. All reorientation is abnormally demanding in ME. Even though it wasn’t directly formulated, this insight was expressed in different ways, also with respect to difficulties with transportation, change of staff and similar events.

One area in where the answers differed somewhat, involved food and food intolerance. Intolerance to foods increases symptoms, and a severely ill patient only becomes quieter. It is obvious that one cannot perform food tolerance trials on these patients to obtain an accurate diagnosis, even though this is generally required for achieving financial support, nor should such testing be a prerequisite for the institution in order to take adequate measures. Here, the regulations should be adjusted according to the nature of the illness. It is known from experience that people with ME all over the world spontaneously change to a lighter diet, with more fruits and vegetables. Considering the unstable circulation that is a trademark of ME, this is not unexpected given the several litres of blood that are redirected to the intestine after a meal, and the fact that the composition of the diet’s nutritional content may greatly affect the size of that flow. (Waaler, Eriksen & Janbu, 1990; Waaler & Eriksen, 1992; Eriksen, Waaler, 1994; Waaler & Toska, 1999).

Those with no previous experience with ME patients felt a greater need for medical justification for the care being given. Some also felt a certain degree of ambivalence toward the strong opinions expressed by relatives. In situations where the patient and/or relatives were already known to the caregivers the staff were more open to their expertise, even if the illness was not medically understood. Even though treatment outcome was not asked for here, it was clear that guidelines provided by patients/relatives were followed because they worked well.

There exists no overview of how ME is distributed in the population. Hospital statistics may be overrepresented by those with the strongest resources. There could be large hidden numbers among drug users, students and the young unemployed, farmers, artists, pensioners, vagrants and misdiagnosed people in locked wards in psychiatric hospitals (Kreyberg, 2004b).

This small survey shows the importance of experience in working with ME. A wider survey should be conducted to map out which competence exists throughout the country, and start building on this competence in order to provide adequate and decentralised health care for this immensely vulnerable and forgotten group of patients, as soon as possible.

 

REFERENCES

Dåvøy, L. (2007). Interpellasjon i Stortinget (Debate in Parliament)

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Holmes, G. P., Kaplan, J. E., Ganz, N. M. et al. (1988). Chronic Fatigue Syndrome: A Working Case Definition. Annals of Internal Medicine, 108; 387-9.

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Khan, E., Kennedy, G., Spence, V. et al. (2004). Peripheral Cholinergic Function in Humans With Chronic Fatigue Syndrome, Gulf War Syndrome, and With Illness Following Organophosphate Exposure. Clinical Science, Feb; 106(2); 183-9.

Khan, E., Spence, V., Kennedy, G. et al. (2003). Prolonged acetylcholine-induced vasodilatation in the peripheral microcirculation of patients with chronic fatigue syndrome. Clinical Physiology and Functional Imaging, 23(5); 282-5.

Kreyberg, S. (1999). ME/CFS En innføring for foreldre og andre som arbeider med barn og unge hjemme eller i institusjon. Stensil, Universitetet i Oslo, August 1999: Appendix. http://www.kronisktraethedssyndrom.dk

Kreyberg, S. (2004a). Kronisk/postviralt utmattelsessyndrom. Tidsskriftet for Den Norske Lægeforening, 124; 2382-3.

Kreyberg, S. (2004b). Pasienter ut av ingenmannsland. Norsk Epidemiologi, 14(1); 79-83.

Lindal, E., Stefansson, J. G. & Bergmann, S. (2002). The prevalence of chronic fatigue syndrome in Iceland – A national comparison by gender drawing on four different criteria. Nordic Journal of Psychiatry, 56(4); 273-7.

Peckerman, A., Lamanca, J. J., Dahl, K. et al. (2003). Abnormal Impedance Cardiography Predicts Symptom Severity in Chronic Fatigue Syndrome. The American Journal of The Medical Sciences, 326(2); 55-60.

Rowe, P. C. (2002). Orthostatic intolerance and chronic fatigue syndrome: New light on an old problem. The Journal of Pediatrics, 140(4); 387-9

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Streeten, D. H. P. & Bell, D. S. (1998). Circulating Blood Volume in Chronic Fatigue Syndrome. Journal of Chronic Fatigue Syndrome, 4(1).

Waaler, B. A. & Eriksen, M. (1992). Post prandial cardiovascular responses in man after ingestion of carbohydrate, protein or fat. Acta Physiologica Scandinavica, 146; 321-7.

Waaler, B. A. Eriksen, M., & Janbu, T. (1990). The effect of a meal on cardiac output in man at rest and during exercise. Acta Physiologica Scandinavica, 140; 167-173.

Waaler, B. A. & Toska, K. (1999). Fordøyelseskanalens store og vekslende behov for blodtilførsel. Tidsskriftet for Den Norske Lægeforening, 119(5); 664-6.

© Sidsel Kreyberg

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