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The majority of articles on CFS
published in recent months have focused on psychological and social
variables or on negative findings (e.g. absence of antibodies to
various viruses etc.). There was much confusion, with some
researchers speculating about the causes of CFS on the basis of data
obtained from people with short-term fatigue, while others talked
about post-infectious fatigue syndrome even though most of their
patients had reported 'tiredness' prior to the documented viral
episode. CFS has, as we feared, become a dust-bin diagnosis.
The papers summarised below were chosen either because they reported something new or because they answer important questions posed in recent years e.g. is there a difference between ME and other fatigue syndromes, can you distinguish between CFS and more general fatigue and how do people with CFS compare with those suffering from depression.
De Lorenzo F et al. Lung
function test findings in patients with chronic fatigue syndrome
(CFS). Australian and New Zealand Journal of Medicine, 1996,
26, 563-564.
Lung function was assessed in 33
patients with CFS (CDC criteria '88) and 23 healthy controls.
Compared to the controls, patients with
CFS showed a significant reduction on all lung function measures
(p<.01). The reasons for the abnormalities are unclear.
Hilgers, A and Frank, J.
Chronic fatigue syndrome: evaluation of a 30-criteria-score and
correlation with immune activation. Journal of Chronic Fatigue
Syndrome, 1996, 2, 4, 35-47.
The aim of this study was to evaluate
the usefulness of a symptom questionnaire and to see if a certain
score correlated with signs of immune activation.
Five hundred and five patients with
suspected CFS and no other definitive diagnosis were assessed using a
list of symptoms and laboratory tests. The results were compared with
those of 53 healthy controls.
Significant differences were found between 385 patients fulfilling the '94 CDC criteria and the controls on 40 of the 45 symptoms assessed. The 13 symptoms corresponding to the CDC criteria all showed highly significant group differences (p<0.001), but 17 further symptoms were added to improve precision: respiratory infections, palpitations, dizziness, dyspepsia, dryness of mouth/eyes, allergies, nausea, paraesthesia, loss of hair, skin alterations, dysco-ordination, chest pain, personality changes, eczema, general infections, twitches and urogenital infections.
This resulted in a 30-symptom
score.
A correlation between the 30-symptom
score and immunological parameters could be evaluated in 472 of the
505 patients. Significant positive correlations were found for a
number of immunological variables including the numbers of CD8+
T-lymphocytes, HLA-DR+ T-lymphocytes, gamma globulins, IgM and
IgG.
In subgroups of patients, the frequency
of positive blood tests for HHV-6 (49.9%), EBV (35.4%), HSV (29.2%),
CMV (12.5%) and Chlamydia (35.0%) was striking.
The researchers note that larger groups of patients with CFS and related disorders show clinical signs and symptoms apart from the classical criteria of CFS. Indeed, there is a high prevalence of local and general susceptibility to infections and hints of prolonged inflammation processes. Together with other results, the data support the hypothesis that a reduced or unstable immune control or delayed immune reaction to persisting viruses or bacterial intracellular pathogens, possibly triggered by common infections or other environmental factors, can lead to a chronic neuro-immune activation state and auto-immune disorders. Hypersensitivity symptoms of the patients might not be mediated by classical allergies alone but also result from a type-IV-hypersensitivity.
Comment
Some very interesting findings which are worth remembering when you read or hear Elaine Showalter claim that there is nothing physically wrong with people suffering from CFS.
Behan, PO. Chronic fatigue
syndrome as a delayed reaction to chronic low-dose organophosphate
exposure. Journal of Nutritional and Environmental Medicine,
1996, 6, 341-350.
Ten patients who had been previously
exposed to organophosphate insecticides and who had later developed
neurobehavioural symptoms (most after an infection) were investigated
using three tests. None had a past history of psychiatric illness.
The results were compared with those of 10 healthy controls.
The tests measured the effect of
buspirone (60 mg) on the hormone prolactin and the influence of
pyridostigmine (120 mg) and dexamethasone (4 mg) on the level of
growth hormone.
Significant increases in the levels of
prolactin were found in the patients following buspirone compared to
the controls. There was also a slight increase in the level of growth
hormone following pyridostigmine while there was a depressed response
to dexamethasone compared to the controls.
Behan notes that the clinical features
of these patients appear to be identical to those documented in
people with CFS. According to Behan, the findings in this study
suggest "that both entities share a common pathogenesis".
Reyes, M et al. Risk factors
for chronic fatigue syndrome: a case-control study. Journal of
Chronic Fatigue Syndrome, 1996, 2, 4, 17-33.
The aim of this study was to examine
various risk factors previously reported to be associated with
CFS.
The 25 patients were recruited from the
major Centers for Disease Control and Prevention study into CFS ('88
CDC criteria). They were all matched by race, gender and age to two
randomly selected healthy controls (n=47). Patients were subgrouped
by type of illness i.e. onset-sudden (occurring within a few days) or
gradual (occurring over a longer time period).
All the subjects were interviewed. They
were asked about a number of possible risk factors including dental
procedures, diet, exposure to chemicals, travel and stress prior to
illness.
The CFS patients were significantly
more likely than controls to report a history of stress, persistent
nasal symptoms, ear infections and ingestion of B-complex vitamins
during the year prior to the case's onset of illness. In addition,
women patients were significantly more likely to have had a
hysterectomy. Compared to those with an acute onset, the patients (n
= 17) who experienced a gradual onset were significantly more likely
to report stressful events in the year prior to onset, certain dental
procedures, sinusitis, exposures to herbicides, pesticides, or
insecticides, and a history of hysterectomy. The links with stress
etc. were not observed in the acute cases. The researchers could not
confirm previously reported associations of CFS with a history of
asthma or eczema; exposure to sick animals; exposure to solvents,
paint, or other chemicals; ingestion of raw-milk; or travel,
occupation, or recreational activity.
While no risk factors were identified
that effectively distinguish CFS cases from healthy controls, the
data do suggest that gradual and sudden onset CFS constitute distinct
subclasses. The differences between patients and controls e.g. the
history of stress, originated from the cases reporting a gradual
onset.
The researchers conclude that future studies should subgroup patients based on type of illness onset and further evaluate risk factors of interest, focusing on the role of stress, exposure to herbicides, pesticides, insecticides, and dental and medical histories.
Comment
These are the first interesting findings to come out of the CDC's own study into CFS. However, the paper left me wondering if the differences between the acute and gradual onset groups were really due to the fact that most acute cases followed an infection whereas the gradual onset cases did not.
Chalder, T et al. Chronic
fatigue in the community: 'a question of attribution'.
Psychological Medicine, 1996a, 26, 4, 791-800.
Thirty eight patients who attributed
their chronic fatigue to 'ME' were compared to 38 patients who
attributed their fatigue to social variables and 40 who believed
their fatigue to be due to psychological factors. All three groups
were followed up eighteen months later.
At the start of the trial, there were a
number of differences between the groups. For instance, the ME
patients were more physically and mentally fatigued than the others
(p<.05) and they had significantly lower GHQ scores (measure of
psychological distress) than the psychological group.
At follow-up, the ME group had the
lowest scores for anxiety and depression; they had the lowest scores
for psychological distress and the lowest proportion of psychiatric
'cases' (28% compared with 70% in the psychological group and 53% in
the social group). There were also differences in coping styles with
the ME group being more likely to reduce their activity than the
others. Finally, it was found that many patients attributed their
fatigue to a number of causes, not just infection. The ME patients
cited reasons such as workstress and emotional upset, although 13%
referred to continuing infection and 25% cited a previous
infection.
The authors note that the ME group were
less psychologically distressed than the other two groups, although
they reported greater fatigue and disability. The rate of psychiatric
disorder was lower than that found in studies of fatigue among
hospital attenders or in general practice.
Comment
Several papers have now found differences between people who think that they have ME or a similar 'post-infectious' syndrome, and people whose fatigue is likely to be due to other problems (stress, depression etc.). It's a pity that the researchers did not check to see how many actually fulfilled the London criteria for ME. Attributing one's fatigue to ME does not mean that you actually have it. On the other hand, there is no evidence from the research that patients who think that they have ME tend to be wrong. Assuming that most did have ME, this research supports other studies showing that the rates of psychiatric illness in these patients are not unusually high.
Buchwald D et al. Functional
status in patients with chronic fatigue syndrome, other fatiguing
illnesses, and healthy individuals. American Journal of
Medicine, 1996, 101, 364-370.
In this study, 185 patients with CFS
(modified '88 criteria) were compared with 246 people with chronic
fatigue (CF), 111 individuals with acute infectious mononucleosis, 25
patients with major depression and 99 healthy controls.
The patients with CFS showed greater
impairment than the CF group on three of the eight MOS scales
measuring disability (physical functioning, body pain and role
functioning). Moreover, the CFS patients showed greater impairment
than that previously observed for any medical or psychiatric
disorder. The disability of CFS correlated with a number of symptoms
(not just fatigue).
Comment
One of several papers published recently which suggest that there are differences between people with CFS and those with more general fatigue.
Komaroff, AL et al. Health
status in patients with chronic fatigue syndrome and in general
population and disease comparison groups. American Journal of
Medicine, 1996, 101, 3, 281-290
The functional status of 223 patients
with CFS (CDC criteria '94) was compared with that of a general
population control group (n=2474) and disease comparison groups with
hypertension (n=2089), congestive heart failure (n=216), type II
diabetes mellitus (n=163), acute myocardial infarction (n=107),
multiple sclerosis (n=25) and depression (n=502).
Measures included the MOS which
assesses disability.
Patients with CFS were far more
impaired than the general population controls on all eight MOS
scales. They were also more disabled than the patients in the disease
comparison groups.
The scores of the CFS patients also differed significantly from those of the depressed group. Certain key symptoms of CFS, including post-exertional malaise, fevers and muscle weakness correlated with the functional impairment scores but depression did not. Thus "most of the symptoms of CFS are unlikely to represent expression of an underlying primary depressive disorder". However, the patients with CFS who were or had been depressed reported slightly more impairment on most scales compared to the patients with CFS who were not and had never been depressed.
Comment
According to the researchers, CFS is associated with greater impairment compared with the diseases mentioned above. Where there is depression in addition to CFS, the level of disability increases. However, the pattern and degree of impairment in CFS is different from that seen in people with major depression alone.
This study is one to cite if one needs to remind someone that there is more to CFS than fatigue and that the disability associated with CFS does not resemble the feeling of exhaustion which your friends complain of after the Christmas break.
Cognitive behaviour therapy (CBT) is
based on the cognitive behavioural model of chronic fatigue syndrome.
The latest description, by Chalder et al 1996 is printed below. We've
used their words so that we cannot be accused of misrepresentation.
However, to save space, we've omitted the references and one or two
descriptions of research.
"The literature suggests that the
premorbid personalities of patients with CFS are characterised by a
marked hyperactivity or workaholism and achievement orientation,
perfectionism and high standards for work performance. Patients'
pre-illness lifestyles have typically consisted of prolonged striving
in order to achieve the personal high standards they have set for
themselves. Failure to meet these standards results in the person
feeling dissatisfied. Achievements seem to have an all or nothing
quality about them and patients report an inability to enjoy whatever
they are doing unless they are doing it well. These harsh personal
expectations place an enormous burden on the individual, so much so
that when an acute illness is experienced and the person is unable to
perform to the usual high standard, he/she believes that something
must be wrong.
Set in this context, delayed recovery
from an infection, for example, may be the "straw that breaks the
camel's back". Although there is little evidence that common viruses
can cause a chronic fatiguing illness one recent study showed an
association between Epstein Barr virus and delayed recovery six
months after onset. It is likely, however, that once several years
have past, factors other than the virus would be influencing the
pattern of symptoms.
At the time of infection it is
pertinent to rest in response to symptoms of fatigue, but if the
patient is still fatigued and resting six months later, then it is
reasonable to consider the contribution of factors other than the
initial virus in the continuing illness.
Why might patients be resting six
months after the onset of the symptoms? People generally use rest as
a strategy for reducing symptoms. However, in some a reduction of
symptoms does not occur. The symptoms persist and the person,
understandably, continues to rest. Slowly, a reduction and avoidance
of activities takes place for fear of bringing about a worsening of
symptoms...
A number of studies have demonstrated
that making physical illness attributions for fatigue predicts degree
of disability in patients with CFS... Many patients may believe the
viral infection that triggered off the illness in the first place is
a persistent one, and that this accounts for their ongoing fatigue.
As viruses are potent, uncontrollable, aversive, frightening and
untreatable, feelings of being out of control are experienced. This
can be compounded by the advice given to sufferers. Some patients
believe, and have been told, that they have a neuromuscular disease.
Consequently, they worry about the risk of causing further muscle
damage. This is an understandable response to the presence of
myalgia, but it may not be an accurate attribution. Although some
studies have suggested muscle abnormalities in CFS, the general
consensus is that neuromuscular function is normal in sufferers.
A further cognitive factor in CFS is
that many patients, in an effort to control and reduce symptoms,
often by adjusting activity levels, become hypervigilant and
oversensitized to bodily sensations. This `symptom focusing' may
serve to exacerbate unpleasant sensations and has been shown to be
associated with fatigue in patients with CFS.
In summary then, symptoms are
perpetuated by physical illness attributions, unhelpful cognitions
and schemas relating to perfectionism and avoidant coping
strategies".
Deale, A., Chalder, T., Marks, I
and Wessely, S. Cognitive behaviour therapy for chronic fatigue
syndrome: a randomised controlled trial. American Journal of
Psychiatry, 1997, 154, 3, 408-414.
This trial compared the effectiveness
of CBT and graded activity (CBT) with a programme consisting of
relaxation training (e.g. progressive muscle relaxation,
visualisation). All 60 subjects fulfilled the Oxford guidelines and
CDC criteria ('92 and '94).
Before the 13 sessions of treatment, there were no significant differences between the two groups except for age. However, there were some non-significant differences: duration of illness (3.4 years in the CBT group versus 4.6 years in the relaxation group), use of antidepressants (13% in the CBT group versus 27% in the relaxation group). In the CBT group, 57% attributed their symptoms to physical illness compared with 73% of the relaxation group.
Effectiveness was measured using the
MOS-short form which assesses disability, the fatigue questionnaire
(Chalder et al 1993), the General Health Questionnaire (GHQ)-12 and
the Beck Depression Inventory (BDI). Patients were also given a
psychiatric interview to determine their psychological status.
Assessments occurred pre, during and post treatment, and 1, 3 and 6
months afterwards. The drop out rate was low (n=7).
Scores at completion of treatment
revealed the greatest group differences for the assessment of the
patients' 'long-term goals'. There were no differences on the fatigue
questionnaire, GHQ or BDI.
At final follow-up, 70% of the CBT
group achieved good outcomes, as did 19% of the relaxation controls.
There were substantial improvements in physical functioning, work and
social adjustment (MOS-short form) and fatigue. In contrast, there
were no significant changes on the BDI or GHQ. Thirty per cent of the
CBT group rated themselves as unchanged or worse compared with 69% of
the controls.
Neither psychiatric status nor
attributions appeared to affect outcome. As to satisfaction with
treatment, 78% of the CBT group were satisfied or very satisfied
compared with 50% of the patients in the control group.
Comment
In my view, the results are difficult to interpret because:
1. There are no details regarding the history of infection and the proportion of patients with an acute or gradual onset (see Reyes et al above).
2. There are no details about the presence of and effect on symptoms other than fatigue and depression.
3. The groups were not evenly matched before treatment (see above) although differences were not statistically significant. There is some evidence that the controls may have been slightly more disabled than the patients receiving CBT.
4. The improvements in levels of fatigue showed at 6 months follow-up but not after completion of the treatment. This is baffling? Why should CBT begin to benefit patients after the course is finished.
5. Progressive muscle relaxation is likely to make people with ME worse. This could partly explain the poor results of the controls.
6. Since fatigue syndromes like ME fluctuate, about 50% of the patients should have improved regardless of treatment. However, the controls didn't. Some were worse off than they might have been had they remained on the waiting list.
7. A 70% improvement is not impressive. In other studies, evening primrose oil helped 80% and magnesium injections helped about 80%. Even Royal Jelly helped 69%.
8. Why did 30% remain unchanged or get worse on CBT? Were these the most severely affected, those with an infectious onset, those with ME?
Chalder, T., Butler, S and
Wessely, S. In-patient treatment of chronic fatigue syndrome.
Behavioural and Cognitive Psychotherapy, 1996b, 24,
351-365.
This paper describes the treatment of 6
patients who fulfilled the criteria for CFS (not specified) and who
thought that they had myalgic encephalomyelitis (ME). Five cases
followed a viral infection and all were members of the ME
Association.
All except one of the patients
fulfilled the criteria for major depression. Some had additional
diagnoses including phobic anxiety and somatisation disorder. The
person who did not suffer from major depression fulfilled criteria
for minor depression.
Patients were admitted to a
neuro-psychiatric ward for three to eight weeks. Mean therapist time
was 10.5 hours. After discharge, patients were seen at four
out-patients appointments. Care was taken to establish an accepting
empathic relationship and a list of realistic and acceptable targets
was drawn up. Patients were not asked to increase activity levels
until the previous activity could be performed without undue physical
difficulty. A record of activities and symptoms was kept for later
discussion. Planned rest, an important part of the programme, was
also regulated, taken at set times and for set durations rather than
in response to symptoms. The emphasis was placed on breaking the
association between experiencing symptoms and stopping activity. The
patients were also asked to monitor negative automatic thoughts and
to generate more helpful alternatives. They were informed that
setbacks were inevitable and instructed how these should be dealt
with. In two instances, relatives were asked to act as co-therapists.
Five patients were given anti-depressants (dothiepin 50-150 mg
daily).
The results indicated substantial
improvements in five cases. There were reductions in fatigue and
depression and improvements in work and social functioning. Four of
the patients maintained these improvements at three months follow-up
and two were able to return to work. One person discontinued
treatment at discharge.
The researchers state that it is
unclear whether recovery was related to therapist time, specific
techniques or anti-depressants.
Comment
These patients all suffered from depression, a condition known to respond well to CBT. I would have liked to have seen details of immunological tests to know if these patients actually had evidence of persistent infection e.g. to Epstein-Barr virus, cytomegalovirus, HHV-6 and 7 and other viruses linked with CFS. A recent study which focused on subgroups of CFS found that patients who had elevated levels of antibodies to cytomegalovirus benefited from the anti-viral drug ganciclovir (Lerner et al, Infectious Diseases in Clinical Practice, 1997, 6, 110-117). In my opinion, British researchers must now start to differentiate between the various subgroups as recommended by American and Australian authorities (including the respected CDC). If we don't, we're not going to identify exactly which patients respond to which treatment. What we are doing at the moment is the equivalent of taking 100 patients with recurrent headaches, finding that the majority are helped by aspirin, and forgetting to assess the minority who don't. In my view, this means that many patients are not getting the specialised help they need and deserve.
To recap, the rationale for CBT/planned
activity is that CFS is the result of three problems: inactivity,
physical attributions and depression. The theory is that fatigue
leads to inactivity ('total rest') which increases deconditioning and
exacerbates fatigue; this and a belief that the illness is viral and
therefore incurable induces hopelessness; the latter results in
depression and further fatigue. According to the King's College team,
the persistence of CFS is therefore the result of psychosocial
factors, not biological ones.
My doubts about CBT emanate from the
fact that neither the theory nor the descriptions of CFS patients who
took part in the trials fit my clinical experience of ME, or the case
histories I have read in the medical journals, or some of the
research I have studied and written about during the past 13 years.
It's as though most of the patients consulting the CFS clinics in
Oxford and King's College constitute one specific subgroup. Or have
I, and the other ME specialists been the ones who have seen the less
typical cases?
A few more thoughts. Study 1 shows that
depression does not affect outcome and that a 'physical' attribution
does not inhibit recovery. So if these factors are irrelevant, we're
left with inactivity as a major cause of CFS. This leads us to the
following questions:
1. does inactivity alone lead to the perpetuation of CFS and2. is CBT combined with planned activity the best treatment.
The answer to the first question seems
to be no. There has not been a great deal of research on activity
levels but what has been published so far has failed to show a strong
relationship between inactivity and fatigue in CFS. The answer to
question 2 is probably also no. Pacing activity i.e. not ignoring
symptoms but staying within one's limits led to improvements in 80%
of patients with post-infectious fatigue (research by Dr. Ho-Yen). So
the specific advice to push on and stick to a plan is not essential
for successful treatment. Kindness, support and practical tips may be
much more important.
Study 2 shows quite clearly that ME patients who also suffer from clinical depression benefit significantly and quickly to CBT and planned activity. This supports earlier findings by Friedberg and Krupp. Therefore our updated advice to CFS patients who are also suffering from mood disorders, and to anyone whose experience fits the description of sufferers by Chalder et al (1996b) is now as follows:
Accept that psychological problems can
delay your recovery, so be honest with yourself and accept CBT if it
is offered to you. You could be much improved within 6 months.
As for the patients with
infection-related CFS who are still mobile, who are not depressed and
who do not have the personalities described above, there is still no
evidence that CBT/planned exercise is particularly helpful. Would I
try it anyway? To be honest, no. I'd begin a healthy, low-sugar diet,
I'd ask for symptomatic treatment for symptoms such as insomnia,
nausea, pain or depression, I'd find myself a sympathetic
psychotherapist or counsellor to support and guide me during this
difficult period, I'd balance activity and rest (advice Ho-Yen) and
I'd try to retain a positive (optimistic) outlook. This approach
resembles CBT in many ways but it is not based on a highly simplistic
theory and does not require patients to ignore their intuition and
experience.
Ellen Goudsmit PhD C. Psychol.
Taken from information written for the
Richmond and Kingston ME Association and Action for ME. Reproduced
with permission.
Copyright EM. Goudsmit 1997.
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