Encephalopathy, ME, is discussed more often in the media than in
professional healthcare curriculum literature. The condition is
often given other names such as “Chronic Fatigue Syndrome”, “fatigue
syndrome” or “lack of energy”, which are more or less vague
definitions of various longstanding fatigue states (Lindal,
Stefansson & Bergmann, 2002; Jason, Helgerson & Torres-Harding,
2003; Kennedy, Abbot & Spence, 2004).
addition to subjective symptoms, which come and go, such as
self-reported fatigue, nausea and malaise, ME is
characterised by reduced stamina brought on
by physical or mental activity, otherwise known as activity
intolerance or increased fatigability (objective exhaustion).
These patients are thus exercise intolerant (Hyde, Goldstein
& Levine, 1992). ). In addition they are different from other “low
energy” patients in that they are at times
disablingly intolerant of sensory stimuli,
have markedly reduced tolerance for alcohol, medicines and various
food stuffs, with disturbances in autonomous, hormonal,
neurological and immunological functions, disturbed body clock, and
pains which are not relieved by treatment. In a fully developed
illness there are symptoms from all organs and bodily systems.
Symptomology is constantly changing. Lack of
explanation for a cause gives rise to psychiatric interpretations.
Recent studies, however, show changes in the peripheral circulation
which can explain a lot of the 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).
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.
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
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 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.
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.
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
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
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
institutionalised care situations to be
fairly similar, even with relatively restricted material.
eight institutions which had been known to have taken in a severely
affected ME patient, were contacted by telephone. It varied whether
it was the ward nurse or someone else in the team around the patient
who answered the phone. 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, with the idea of how one could give adequate services
in the future for this patient group, without taking into account
the existing restrictions in resources. It must be said quite
explicitly that especially “grass root”
experiences can be as important as recommendations and therapy
suggestions from professionals who do not know what the care
situation involves. It was left to the departments themselves to
decide who would formulate the answers. The following questions were
asked: Which resources should you be provided with to be able to
offer adequate care for a seriously ill ME patient? State reasons
for your answer based on your own experience.
of the institutions gave written answers by e-mail, post or via
both. The eighth considered that ME was not the reason for the
patient’s care need and their experiences were irrelevant for our
institution asked for the question to be provided in writing but had
reformulated the given problem when they gave their answer. This
didn’t affect the outcome and was only taken as a novelty. In three
cases single statements were elaborated upon after renewed contact.
study’s starting point was five women and two men who needed care.
In one case the patient lived with the parents but was cared for by
permanent staff from a nearby institution. In one occasion the ill
person lived in a care home connected to a nursing home. In one
occasion it was a rehabilitation centre that admitted patients on a
short term basis, with a clear target of improvement during the
stay. In this case the place was used as a half way house because of
lack of space elsewhere. In one case it was a short term department
within a nursing home that ran the rehabilitation. The others were
ordinary nursing homes.
the institutions didn’t have any previous experience of ME, whilst
others had experience of several ME patients with unequal grades of
severity. The extent of this experience material is not known.
relatives were involved in to different extents in the daily care
and acted partly as advisers. In a few places the staff also
functioned in a supportive role for relatives.
answers are concentrated especially on economical support for
physical efforts, extra staff, individually adjusted eating and
extra time. One wished for regular staff with a limited amount of
chosen carers and guidance both before and after the stay. A few
were also concerned about how one could look after relatives and
carers after meetings with patients in a permanent crisis. The
special problems that materialised
when patients got more energy became more apparent in various
degrees and are in the borderline toward rehabilitation.
Screening against sound
could look after the need for complete sound proofing. Amongst the
suggestions were a private room in an area with least noise
pollution, a sound proofed room, a sound proofed door and eventually
one’s own screened ward. In one case there was a built in sound
proofed room within a supportive housing accommodation.
dining areas were too noisy. Even if a few could physically get to
the dining area themselves, the food had to be brought to the room.
pointed out that the staff had to perform tasks quietly and be aware
of their voice level, use of equipment such as plastic utensils,
finish as quickly as possible, not talk unnecessarily, possibly use
cards instead of spoken words, make sure that housekeeping tasks
were done in such a way that the patient was not burdened.
noticed that tolerance for sound and talk improved as the condition
improved and then it was mostly the ill person themselves who
initiated discussion with the staff and exposed themselves to sound
from the radio or sang to themselves.
Screening against light
patient’s need for complete black out could mean problems in caring.
Many wished for lights that could be dimmed gradually. In one ward
it was suggested, in order to avoid a gap between the window and
screening, to install a roller blind inside the double glazing and
additionally double curtains.
for lying down
patients who spend most of the time in bed it was identified by one
institution of the special need for a good bed/mattress.
Temperature and air quality
which took in several ME patients pointed out that a normal
ventilation system was not good enough. The ill people had to have
even temperature and could feel uncomfortable by the heat in the
summer. For the consideration of both the patients and carers the
need for good air circulation meant installation of an air
conditioning system, especially where there was extra sound and
Customised food was seen to some extent
differently depending on the routines of the institution and
reflected somewhat the knowledge of, or acknowledgment of food
intolerance problems with ME. It was difficult to register if a
patient deteriorated due to certain foods.
case a special diet was only present if there was a doctor’s note.
It was, however, known that many institutions avoided usual foods
such as milk, sugar and flour. Even this caused extra work.
found it natural to work with a dietitian and adjusted the food
according to the patient’s wishes. Others called for a nutritionist
and for a possibility to order special food.
enough time for feeding was, as a rule, seen as the biggest problem.
It was simpler if the ill person took all food in a liquid form. The
need for extra time for feeding was seen throughout as a resource
problem which had to be solved by adding extra staff elsewhere.
physically some pointed out the need for a private kitchen for more
flexible solutions for the ill person and their families to be able
to cook for themselves. The relatives could then also more easily
function in a supporting role for the ill person and at the same
time offload the staff.
addition to special physical efforts, there was a need for extra
human resources. There was a wish for a regular, stable staff with
the fewest possible people, who could cover the ME patient’s need 24
hours a day. “[…] all care such as tidying up, feeding, washing and
so on takes at least three times as long as one is used to.” This
demands such large resources that it requires increased staff in the
ward as a whole.
other things it was wished for a limited amount people involved with
every ME patient because “it is difficult for the patient to relate
to too many of the staff”. Here one wished for a lot of
accommodation to reduce the amount of people in the team.
involved also wished for everyone concerned to be able to see
warning signs of deterioration and take precaution- “ for example
sleep, chest pain, blurred vision, runny eyes, headache, pressure on
the forehead, sweaty palms, cold extremities, tingling of toes and
fingers, sound of voice”. The carers also had to act as the ill
person’s spokesperson to the outside. ME patients have to mobilize
to be able to talk and cannot always talk when it suits others.
and the possibility of being as well prepared as possible for what
is happening and when, is vastly important for the ME patient to be
able to manage the daily life. Ordinary home nursing care doesn’t
therefore work well. To be able to take care of the patient’s
“physical, psychological and social needs demands a certain amount
of understanding of the diagnosis (complexity of problems)”, as
expressed by one of the carers. For example, to understand the
consequences if one arrives a few minutes late. “We set alarms and
change times for other tasks so that we can be precisely with an ME
patient. If we don’t attend we know the consequences for the patient
becoming worse and having to, for example, rest a day or two
afterwards to recover.” Another one explains how deterioration was
triggered by the cleaning staff being five minutes late.
institutes which followed detailed instructions from relatives, and
took patients’ wishes to the point, had experienced that this worked
and the ill person improved. A leading caregiver was surprised at
how little extra work it took to make carers come at agreed times
and do all the tasks exactly in a way the patient advised – even
though the ill person could additionally call for help outside the
called for information well in advance before the patient arrived to
the ward, while others had had enough information from relatives.
Many put weight on the usefulness of important people in the ill
person’s network. Many on the other hand called for professional
guidance, courses and seminars. The setting up of an ambulant
specialist team was suggested, possibly regional ME wards.
and stimulation can have the opposite effect of that which was
intended. The ill person wants to, but can’t, and becomes frustrated
over coaxing – if it is not always so well meant: “It is important
when advising the staff connected to the ME patient that one has to
think differently compared to how one thinks with other patients in
the ward, for example patients in rehabilitation, long term
patients, and others.”. As a consequence of improvement there is
often a need for stimulation and a big need for talking. “Let the
patient make contact without him being bombarded with impressions…”.
One can for example “respond with cards or simple nods”. In other
words: Let the ill person take the initiative themselves.
often became tired in one way or another. It could be to do with
constant arranging, the special considerations one had to take into
account all the time, and to be related to the ill person’s problems
of accepting the diagnosis, their frustration of not being able to
do as much as they wanted, set backs and so on.
pointed out that a care plan was important to ensure that everyone
gave the same treatment. Carers who would be part of the team had to
be carefully chosen:
medical follow up […] is important, but the personality of the
carers […] is equally important and has to be appraised accurately.
One has to have both nurses and nursing assistants in 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 its symptoms can seem challenging and
the staff have to be well prepared and in a position to handle this
in a confident way both in the presence of the patient and others.
It demands confident people who can pacify and who can see the
fluctuations the illness brings. It can be difficult to tackle the
behavioural pattern when the care is very
detailed and it is the patient who steers what shall happen and
when. The negotiation of this (with the ill person, added by
writer) can have negative consequences for the illness development.
It is important that the staff themselves are willing to be in with
the resource team because this is demanding ‘one to one’ care. […]
also has the need for ‘debriefing’. This is not common in a nursing
home and one has to set aside a way and time for this.
role of Relatives
ME is a
long term, demanding condition which takes the relatives’ time, and
where all involved have to live with great uncertainty not only for
the future, but for what every single effort can bring on – the
daily as well as the extra ordinary ones. The risk for a relapse is
always present, and poorly ME patients have very small margins. In
this context the relatives were mostly seen as a resource. Often
they were in a position to guide both beforehand and during the
stay, and they acted in various degrees as relief persons. They were
also better than the staff in registering a patient’s deterioration
and could act as spokespersons for the ill person. Many take on the
role as the extended arm of the ill person.
expressed on the other hand also a wish for enough time and
resources to be able to look after the relatives better: “As it
often involves young people it is important that one has also time
for the family […]. The life situation for the whole family becomes
very insecure, both because at the moment there is so little
knowledge of the illness itself, individually how the illness runs
its course and what timescale we are dealing with.”
results confirm the expectation of relatively similar answers even
though not everyone brought in the same points. The task opened up
for suggestions and reflections,
and it was varied how thoroughly reasons were given. Some opinions
appeared already during the first contact and are included to
complement the picture.
emphasized structure initiatives, especially in connection with
screening and dining area, and professional guidance. A few also
called for readiness for conflict solving and “debriefing”. Several
pointed out the need for specially selected staff, great flexibility
and extra time because ME patients put demands on staff resources
both physically and psychologically. To be able to
prioritise ME patients, it was necessary to
have extra staff to solve problems elsewhere in the ward.
Alternatively one had to set up personal ME wards. Even though
relatives were seen as a resource, a few also saw the need to be
able to better look after the relatives, also family members who
were not directly involved in the care.
the differences in the answers are due to different prerequisites
regarding the physical conditions of the institution and existing
competence. Some are also due to unequal aims regarding the stay and
treatment environment in general. Those who actively rehabilitated
differed from the pure care wards, mainly regarding expectations of
frustration regarding the illness was expressed more clearly by both
those among the ill and carers who aimed for advances via mobility.
Even if the expectation is improvement over time with ME, the
improvement is mostly very slow, with major or minor relapses when
limits are exceeded or with extra strain which is outside the ill
person’s control, such as moving, infection or a shock of noise. An
approach with preplanned aims is in contrast with the nature of the
illness unless the aim is stabilisation,
which can be achieved most easily by screening against sense
stimulation and limiting activity to a level the ill person can
tolerate without bringing on a reaction. At the same time there
needs to be an activity plan within the tolerance limit. The thought
process is in other words opposite of the usual rehabilitation,
where active or passive mobility is guided by tolerance levels being
pushed in order to get results.
stabilisation over time the tolerance ability
in different areas increases unevenly. There is being created a
palpable energy reserve which can be used in
small doses with pauses in between in such a way that there
is time to register a prospective reaction. The improvement starts
with a concept of finding out what the ill person can tolerate out
of the different challenges, and then these are tested out carefully
with gradual introduction of light and sound, new foods, elevated
position and so on, and active movement of muscles and joints,
preferably without weight bearing to start with. It is considerably
harder to work against gravity than it is with it, a
relationship that was described as early as 1934 (Gilliam, 1938).
Planning and personalised
exercises can be useful so that the ill person doesn’t spontaneously
increase physical activities too soon and too long while improving.
and/or massage is validated if it increases well being. ME patients
experience well being with an activity within tolerance limits and
do not need encouraging. They rather need to be told to take rest
breaks before they reach their performance limit so that they
don’t push for a reaction ahead of them, with increased symptoms and
lengthened recovery time as a result.
impression was that rehabilitation institutes aimed to find an
optimal balance between pushing the limits carefully and thereafter
stabilising with rest, but found it difficult
to calculate the length of the necessary
stabilisation, or what would trigger a
reaction. The result was frustration both among patients and carers
when there was a relapse. It is possible that some of the pressure
of expectation is created by the false impression that micro
training is favourable
with ME. Such an approach goes against all experience and is based
on a concept of fatigue being caused by an underlying lack of
motivation, which is postulated in the so called Oxford criteria (or
similar psychosomatic interpretations) which form the basis of many
of the studies concluding that GET (Graded Exercise Therapy) or CBT
Therapy) are good for “chronic fatigue syndrome” (Kreyberg, 2004a).
GET are activating therapies which do not take into account the ME
patient’s tolerance limits in any other way than that taking part is
voluntary. The therapy is offered and therefore caters for the
patient’s experience of being ill. Such recognition gives hope after
years of rejection and disbelief, which many have met within the
health care system and/or family. Studies which show positive
outcomes for treatment in no circumstances include the most severely
affected patients who are not able to attend treatment
principles of ME treatment are the same regardless the severity of
the illness, but the ill person’s performance abilities are diverse,
and efforts for relief follow thereafter. One has to know the
condition can go within hours or days from being self-supporting in
several areas to needing fulltime care, and even someone with a high
grade of autonomy can be totally exhausted during parts of
the day, without an ability to have a conversation, call for help or
look after oneself.
affected patient is extremely vulnerable and unstable so that the
smallest effort can trigger a reaction. Small details will influence
the everyday life a great deal in good and bad, both for the ill
person and carers. This can be both demanding and rewarding. It is a
big improvement when the ill person can do something themselves, for
example lift a glass up to the mouth or type in a telephone number.
This saves the ill person from sensory input, which is being loaded
by having 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 carers have to learn from one another.
Rehabilitation and care go thus hand in hand, even for the very
severely affected. Whether it deals with care or
organising an activity by oneself, one has to
be aware of the pattern of the ill person’s limits which are not
usual in other illnesses – and this at such a detailed level is
difficult to imagine. In addition one has to be practically
odour free, sound free and invisible.
have to develop increased awareness in order that the patient can be
saved from using energy to give instructions. They have to do their
work and then leave the room because every attendance drains the
mental capacity of the patient. On the other hand it can help if
someone is around when there are severe and constant symptoms
because it gives security and certain diversion.
It can be
impossible to hold a tooth brush, fork or pen or hold a telephone
conversation, yet still be possible to press an sms message with the
hand resting on support. Such apparent inconsistencies in what the
ill person can and can’t do, show a totally characteristic pattern,
but often becomes a source of conflict amongst the staff.
conflicts have to be acknowledged early and have to be solved by
someone who knows the nature of the illness.
Improvement requires more stimulation and contact and the staff
becomes easily overworked when the ill person’s capacity increases.
The capacity to talk by oneself is greater than the capacity to take
input from others or enter into discussion, which demands adaptation
of concentration from outgoing to incoming. All adjustments are
abnormally demanding with ME. Even though this wasn’t directly
formulated, this insight was expressed in different ways, also
considering the difficulties with transport, change of staff and
where the answers were somewhat different involved food and food
intolerance. Food intolerance increases symptoms, and a severe
patient becomes just quieter. It is obvious that one can’t
experiment with activities even if the rules allowed one to do so,
and that the institution should be able to take this into
consideration. Here the rules have to be adjusted 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 lots of
fruit and vegetables. Thinking of the unstable circulation that is a
trademark of ME, it is maybe not unexpected as one knows that
several litres of
blood is redirected to the intestine after a meal, and that the
composition of the diet’s nutritional content can make a big
difference. (Waaler, Erikse & Janbu, 1990; Waaler & Eriksen, 1992;
Eriksen, Waaler, 1994; Waaler & Toska, 1999).
didn’t have previous experience of ME patients, wished to a greater
degree for medical justification to support the care being given. A
few also expressed a certain ambivalence toward relatives’ strong
opinions. Those who knew the patient
and/or relatives beforehand, were more open for their expertise even
if the illness was not medically understood.
Even though performance targets were not asked for here, it was
clear that systems which were outlined by patients/relatives were
followed because they worked well.
no overview of how ME is distributed in the population. Hospital
statistics can show the relative emphasis of those with the
strongest resources. There can be a large hidden number among drug
users, students and the young unemployed, farmers, artists,
pensioners, vagrants and misdiagnosed people in locked wards in
psychiatric hospitals (Kreyberg, 2004b).
small survey shows how important experience is in the work with ME.
It would be preferable to do a wider survey of the competence that
exists all around the country, and build on this in order to begin
to establish adequate and decentralised
services for a very vulnerable and forgotten group of patients as
soon as possible.
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Last Updated: 2/11/2008