The Australasian
Report on CFS
Compiled by Margaret Williams on 2 December 2001 from various critiques
posted on Co-Cure
In 1996 Dr Michael Wooldridge, Minister for Health and
Family Services, approved an application to Medicare to provide funding
of $130,000 to the Royal Australasian College of Physicians (RACP) to produce
Guidelines on the most clinically relevant and cost effective methods of
diagnosing and treating CFS.
The first draft report was released in December 1997
and was heavily criticised.
The second draft was released in June 2001 (this four year delay achieved nothing).
As in the UK CMO’s report, the guidelines focused on
the (psychiatric) management of symptoms, not on discovering their cause.
They ignore the substantial evidence of organic disease.
Excerpts from published critiques include:
Dr Abhijit Chaudhuri, DM, MD, MRCP (UK); Clinical Senior
Lecturer in Neurology, University of Glasgow; Consultant Neurologist, Institute
of Neurological Sciences, Glasgow.
(Introduction).
The last sentence is seriously misleading (and) should be deleted.
The RACP seems to suggest that cognitive behaviour therapy (CBT) provides
a clear understanding of CFS. This
claim is unfounded and lacks evidence…CBT is not a specific strategy for
CFS where its claimed benefit is still questionable….no long-term study
has established that graded exercise programmes can significantly improve
aerobic capacity in CFS…..It appears that the RACP has failed to recognise
that post-exertional malaise is a valid CFS symptom.
There is no evidence that patients with CFS demonstrate avoidance
behaviour to physical activity as claimed……the second paragraph of this
section is a mixture of imagination and half-truths and should be entirely
deleted. The UK experience of graded exercise in CFS has shown that as a
single intervention, graded exercise was associated with the highest negative
grading for its effect on fatigue by the patients.
(What is CFS?). Patients
with myalgic encephalomyelitis (ME) fulfil the modified CDC criteria for
CFS. Both neuromyasthenia and ME
are classified as neurological diseases by the World Health Organisation
in the International Classification of Diseases (ICD-10).
If ME is accepted by the RACP to be the same as CFS (page 18), then ME/CFS is a neurological disease according to the WHO classification. ….RACP appears to be making a subtle attempt to suggest that patients with CFS have a subjective problem or an illness behaviour (problem). (This) should be deleted. RACP is confusing the issues of CFS and unevaluated chronic fatigue.
(What other terms are commonly used for CFS?). It is incorrect to propose that neurasthenia
is the same as CFS: it is neuromyasthenia (and not neurasthenia) that is
similar to CFS. the discussion on
neurasthenia ( a psychiatric disorder in ICD-10) should be replaced by a
note on neuromyasthenia ( a neurological disorder in ICD-10)….The suggestion
that neurasthenia was an alternative term for CFS is to be found largely
in the psychiatric literature. Most
neurological texts of the 19th century make it clear that neurasthenia
was an inaccurate and confusing term and should not be used in clinical
practice…..The RACP must clarify the diagnostic definition used…the higher
prevalence of CFS in primary care was based on a broader diagnostic definition
for CFS (the Oxford criteria) that would be inappropriate.
(Does chronic fatigue overlap with other illnesses?).
While the document takes care to mention somatoform disorders and
chronic fatigue, it does not mention the following diseases with overlap
symptoms of chronic fatigue, e.g. post-polio syndrome, multiple sclerosis,
dysautonomic states, orthostatic intolerance or postural tachycaredia syndrome,
cardiological syndrome X, post-Guillain Barre syndrome, chronic hepatitis
and so on.
The reader of the document may be lead to believe that
the overlap of chronic fatigue is only restricted to the functional disorders.
The number of psychiatric references cited to support the psychiatric
co-morbidity in CFS is the highest in the entire document.
However, analysis of these references shows how uncritical and biased
the selections are.
The most recent reviews which clearly show that psychiatric
co-morbidity in CFS has been over-exaggerated are omitted…the psychiatric
co-morbidity in CFS is comparable with that seen in other chronic medical
illnesses (MS, diabetes or cancer)….The document confuses the issue of somatoform
disorders and CFS. Fewer than 5%
of CDC-defined CFS population would fulfil the DSM-IV diagnostic criteria
for somatoform disorder as shown in a published study. However, this study has not been referred to…..Only
psychiatrists may find this distinction difficult, as appears from the cited
references….In my opinion, this entire section should be scrapped for its
abysmal quality of potentially misleading information.
(What are the outcome of fatigue states?). The fact that complete recovery of CFS in adults
is uncommon should be clearly stated.
(What is known about the pathophysiology of CFS?). This subsection is confusing, poorly written
and is an inappropriate reflection…I find it strange that the latest reference
cited is dated 1995. This suffices
to show that the authors of the RACP document have not desired to look beyond
1995 for the pathophysiology of CFS (because the earlier papers) support
the psychological hypothesis. Non-psychological
hypotheses have been largely ignored.
(What psychological evaluation is required?). The document states that evaluation by a specialist
psychologist or psychiatrist “may be useful for the diagnostic and treatment
purposes”. This is inappropriate
advice and should be reviewed. Referral
to a psychologist or psychiatrist in CFS is only indicated for concurrent
or suspected psychological problems…furthermore, psychiatric intervention
for CFS has been shown to be ineffective in the long-term.
(Managing CFS). I am surprised by reading “ This
is in sharp contrast to the widely held but inappropriate belief that prolonged
rest and social withdrawal should be advocated”.
Where did the RACP discover this “widely held belief”?….I
believe this is a good example where the authors of the RACP guidelines
have made an erroneous statement based solely on their personal belief rather
than on the evidence-based science….At the very least, this sentence should
be deleted as a mark of respect to the intelligence of the CFS patients.
(Overview). Sadly,
this document contains many flawed statements and observations.
In some areas, as already pointed out, the accounts appear biased
and inaccurate. In addition, I have deep concerns about the
selectivity of the literature review….as an example, while great effort
has been taken to discuss the psychiatric co-morbidity in CFS, (the guidelines)
do not bring home the point that the rate of psychiatric co-morbidity in
CFS is comparable to many other medical and neurological conditions and
that as a group, CFS patients can be reliably distinguished from depressed
patients by clinical assessment using widely-validated neuroendocrine tests….The
document has over-emphasised the psychologically-driven cognitive behaviour
model of CFS and has failed to review the appropriate literature on the
neurology, neuroendocrinology and neuropsychiatric changes in CFS. This is rather surprising given the fact that
“ME” (an alternative term for CFS) is a neurological disease in the current
classification of the WHO…..The paper has devoted much of its clinical discussion
on the comparison of psychiatric disorders with CFS….The quality of references
and review on the neurobiological aspect of CFS is very poor, with several
important omissions of research carried out by the international groups
in the past three or four years…..The cited references show a skewed representation
of a group of psychiatrists (notably Wessely and Hickie). These features clearly undermine not only the
quality of science but also the quality of advice presented in the guidelines.
The guidelines also show a preference for CBT and graded
exercise therapy and ignore criticisms and the flawed designs of the trials
upon which their success has been claimed.
CBT as an intervention is no more effective than a purposeful
physician-patient relationship.
(Conclusion).
The RACP guidelines on CFS have several shortcomings. Many areas of the text appear highly opinionated
in favour of the psycho-behavioural model of CFS. In its current form, this document cannot be
recommended for acceptance since it does not reflect the cumulative base
of knowledge on CFS.
Dr Eleanor Stein, MD FRCP ( C ) Psychiatrist (Calgary,
Alberta, Canada)
The failure to mention any of the evidence of physiological
and neuropsychological deficits in CFS is disappointing in a document sponsored
by an authoritative body who would presumably wish to present an accurate
and unbiased view of current medical knowledge…..The authors could hardly
be unaware of the repeated findings by unaffiliated groups of autonomic
dysfunction (and) immune dysfunction in CFS…. In conclusion, this document...will
ensure that most persons with CFS in Australia will continue to be inadequately
treated.
Dr Peter del Fante, BSc, Dip Comp Sci, MBBS (Hons,) MSc,
FAFPHM (RACP), FRACGP, MRACMA; Medical Director, Adelaide Western Division
of General Practice
“These guidelines
have been sitting around for years awaiting a revision because they were
considered biased and incomplete. A
revised version is suddenly thrust upon us…and then we are given a short
time-frame to respond…Is this how the RACP (of which I am a Fellow) undertakes
rigorous peer review of guidelines?……The content has hardly advanced from
the biases and incompleteness of the initial draft guidelines….This only
confirms the perceived lack of professionalism and integrity in creating
a balanced and unbiased set of guidelines for CFS….Too much emphasis is
placed on fatigue and sleep disturbance at the expense of the other key
symptoms of CFS…. CFS is a heterogeneous, complex, multi-system and multi
factorial illness; the recent State of the Science Conference (October 2000,
Arlington, Virginia, which was organised by the US Department of Health
and Human Sciences) acknowledges the need for CFS patient populations to
be sub-grouped / stratified (and) this should equally apply to the management
of CFS. All the CBT studies to date
ignore the above fact and some even modify the CDC criteria (Judith Prins
et al, Lancet 2001:357:841-847). Clearly,
all the studies are methodologically flawed and their conclusions biased.
Some of the studies even admit this fact.
(CBT) does not treat the underlying (as yet unidentified) disease
process in CFS.
You also completely ignore the growing evidence from
neuro-imaging (both SPECT and PET) of significant, localised reductions
in blood flow to areas of the limbic system and brain stem regions. The areas affected are different from those
seen in patients with depression. These
areas correlate well with many of the CFS symptoms….even if the disease
process cannot be defined, there is objective evidence of disturbed brain
You appear to completely ignore Level IV evidence on
consensus opinions of respected authorities (in Australia and overseas)
based on clinical experience (which) should form the backbone of management
strategies. In your Introduction
you emphasize clinical judgment, yet this is downplayed considerably in
your guidelines.
There is no mention of dietary aspects to management.
My experience with using SSRIs in CFS patients is that
the majority can only tolerate low doses.
Their CFS actually worsens with usual doses used to treat depression.
Fortunately, the ME/CFS groups have very professionally
developed patient information and self-management guidelines to use while
we (the medical profession) get our act together.
Peter C Rowe, MD., Professor of Paediatrics, Johns Hopkins
Hospital, Baltimore
I am disappointed by the complete failure to integrate
the scientific evidence regarding circulatory abnormalities in CFS. In a detailed letter on the draft guidelines
written to
Despite the fact that many more scientific studies have
emerged on this topic in the past three years, the current revision of the
guidelines contains even less on orthostatic intolerance….the failure to
integrate literature from many sources perpetuates pre-existing disciplinary
biases in reviews on CFS.
The evidence for an association between CFS and orthostatic
intolerance is strongest in adolescents but there is no mention of this
association in the guidelines.
The revised draft has recommended “active approaches
to the control of key symptoms”, focusing primarily on analgesics and antidepressants
as a means of improving daily function…..few physicians would withold therapy
from those with serious orthostatic symptoms. I don’t think the guidelines should ignore treatment
of persistent orthostatic symptoms in those with CFS…symptoms of orthostatic
intolerance include chronic or severe lightheadedness with upright posture,
exercise intolerance, recurrent syncope and palpitations or excessive tachycardia
with standing (other symptoms include
chronic fatigue, difficulty thinking and concentrating, headaches, myalgias
and chest wall pain, and nausea).
In closing, I feel the debate about the optimal treatment
for patients with CFS is not advanced by ignoring a substantial body of
the current evidence. Guidelines
that do not even acknowledge the research findings in this area will risk
being dismissed as hopelessly biased.
Laurence E Budd MB
BS, Consultant Paediatrician, Coffs Harbour, NSW
(Australia)
In my view (this document) epitomises limitations with
the scientific methodology and the application of “evidence-based-medicine”….conclusions
have been reached that represent opinion or consensus view rather than a
statement of the obvious that insufficient evidence exists to allow an accurate
and definitive conclusion to be reached.
That a number of similar opinions can be assembled from published
sources is not in itself “evidence” that an opinion or point of view is
correct. The history of medical practices
and opinions is littered with consensus points of view that eventually have
been shown to be incorrect.
There are some specific issues, in my view, that cause
concern.
Proscribed pathology testing: novel and innovative testing procedures are
essential in trying to determine an understanding of aetiology as well as
pathophysiology.
“Science” surely, is by definition the application of
novel and innovative strategies to reach understanding in exactly this situation.
How can the “recommended” tests progress the process of understanding
CFS?…to restrict testing to a range of tests that cannot define the aetiology
or pathophysiology of CFS is anti-scientific.
Multiple chemical sensitivity is barely mentioned, and
when mention is dismissed as irrelevant.
This is an unfortunate position for the committee preparing the Guidelines,
suggesting adoption of consensus opinion rather than due consideration of
all possible aetiologic factors. The omission of MCS raises serious questions
as to the scientific credentials of the document. Perhaps MCS is a politically uncomfortable concept…but
political sensitivity is not a valid scientific reason to ignore the obvious
cross-over of symptoms with CFS. I
believe it is unfortunate that MCS is ignored in this document. I don’t believe that any Guidelines document
will have validity if MCS is not given due consideration and recognition.
Some concern is expressed about attempts to manage CFS
by dietary and nutritional means….Unfortunately similar concern regarding
adverse events from common pharmaceuticals, especially the neuropsychiatric
compounds, are ignored….The inference in the document that diet and nutrition
strategies are inherently wrong is not a fair representation of such strategies,
particularly when there can be significant and, worryingly, unpredictable
adverse reactions to orthodox treatments.
What confidence is there that the Guidelines will remain
“guidelines” and not become dogma?
CFS is a complex disorder that can have a devastating
impact on those affected and their families.
My personal experience with CFS clearly indicates that the medical
profession has an obligation to provide professional support of the highest
integrity.
Dr Nicole Phillips, Medical Editor (Australia)
I am a psychiatrist, medical educator, writer and medical
editor.
The term neurasthenia is an outdated English psychiatric
term which some CFS researchers are trying to revive. The DSM psychiatric classification system used
in America and Australia has not used this term for many years on the basis
of its lack of validity. It has no
place in a section on “other terms for CFS” other than to be mentioned and
dismissed.
If a sound psychiatric and physical history is taken,
(somatisation disorder) can, in most cases, be clearly distinguished from
CFS.
The study by Wilson in which 19% of patients followed
up developed “other psychological disorders” does not state the important
point that in any chronic illness,
There has been more than enough evidence, including HPA
axis work, to dispel Wessely’s “depression hypothesis” as invalid. The references about (CFS) being a “psychological”
response in “vulnerable individuals” are out-dated and this purely psychological
hypothesis has no validity in 2001.
In generalised anxiety, fatigue is not a core feature.
In DSM IV, fatigue is not even mentioned in the diagnosis of panic
disorder.
In reality, people with depression can present in many
ways. Fatigue and / or pain is not
the most likely presentation at all.
In summary, the document shows bias from certain psychiatric
researchers.
Dorothy I.W. Morris TSTC, HDT(Sec), B Voc Ed & Train,
Dip RBM (Australia)
The cognitive problems of ME/CFS typically include poor
concentration and short-term memory, word-finding difficulty, and inability
to cope with multiple stimuli (with) fragile retrieval. Brainwaves, without warning, may change from
beta (thinking) to delta and theta waves (associated with sleep and pre-sleep
states in healthy people) as sudden inexplicable “power-drains” during cognitive
challenge. My research also found
that there is objective evidence of deterioration of physical and mental
fatigue after exertion, and yet this report has not mentioned the nature
of cognitive impairment in CFS.
Other symptoms which this RACP report has not addressed
include orthostatic intolerance (neurally mediated hypotension), the muscle
lactate response, and the high incidence of new onset asthma and / or allergy
after CFS where (patients) are affected by environmental allergens / chemicals.
These RACP Guidelines ignore the cognitive dysfunction
of ME/CFS and also the other physical symptoms altogether.
Maureen A Stephenson, BA, Dip School Admin, MACE (Australia)
Areas of concern
Presentation and Format: inconsistency in labelling the document; the
need for further editing in terms of content to correct imbalance; noticeable
repetition of content; bias to one school of thought (ie. an approach which
is parochial rather than global); narrow research base; no details re literature
search.
Content: minimum consideration
of sub-groups with the CFS population; stereo-typing of patients, with emphasis
on those who recover; exclusion of those patients whose condition is stabilising
but not improving and those who continue to deteriorate; application of
negative symptoms to CFS alone when indeed they are common to many illnesses
and disabilities; highlighting factors which are seen by the writing team
as impeding recovery and minimising patients own coping strategies; minimum
inclusion of patient experience and maximum emphasis on opinions held by
the writing team; advice to doctors which is disempowering to patients (authoritative
statements which are not supported by longitudinal studies); emphasis on
physical exercise.
To conclude: Today, both medical
personnel and their patients have quick access to worldwide information
via the internet and are quick to identify bias, omissions and filtering
of information. In today’s social
climate, input from clients (be they consumers, patients, shareholders)
is considered a legal right (and) an important part of any guidelines document.
By contrast, medicine’s sole emphasis on an evidence-based
approach appears out of touch with reality.
A Guidelines document on any medical condition needs
to pursue balance rather than create division.
No medical writing team can ignore the diversity of worldwide
research into CFS and expect credibility.
Judy Lovett, President, National Body, ME/CFS Association
of Australia (submitted on behalf
of the Board)
I do not believe that our organisation, representing
consumers around Australia, can support the current version….Surely CFS
patients are entitled to the very best outcome possible from a guidelines
document.
(re) Investigations: Please refer to the papers presented
at the Brussels Conference and at the (AACFS) Fifth International Research
and Clinical Conference (Seattle) January 2001.
“Sleep hygiene” has little relevance in an illness such
as CFS. I can cite clinical experience that states that sleep hygiene is
of no benefit. Have you ever watched
a very ill CFS patient trying to stay awake?
It is a pathetic sight. They simply cannot do it, no matter how strong
willed they may be. Please delete “sleep hygiene” as a management strategy.
In our view, this paper overlooks the severe end of the
spectrum. Many people with CFS are
housebound; however, the severely (affected) end is far worse. At the severe end, they will be bed-ridden,
unable to feed properly and unable to attend to personal care.
It is very important that this is recognised because
access to care will only be available if this recognition is given.
(What laboratory tests are appropriate?). Again there is a blurring between fatigue states
and CFS. This paper should refer
to CFS only.
(Management). It should be
noted that some patients with CFS have very bad reactions to
(What are the disadvantages of a diagnosis of CFS?). Please remove this section. If a patient has any other illness, the doctor
will tell them so. Why is CFS different?
(The role of patient support groups). You again ignore the role of the support groups
in providing information to the medical community and providing money for
research. This is self-help at its
very best.
In conclusion, I must state that our organisation no
longer supports the guidelines. We
originally co-operated in every way possible.
It should be written after extensive, current literature searches
have been evaluated. The content
should stand up to rigorous debate and peer review.
To accept anything less is totally unjust to the CFS patients. In the light of the vast array of information
put before you, please do not continue with the publication of these guidelines.
Frances B Sandbach on behalf of the Committee, ACT ME/CFS
Society Inc (Australia)
The literature review presented in the guidelines is
incomplete and biased. Information
reporting the organic view of CFS is under-represented or substantially
absent, whereas that involving psychiatric opinion and psychological aspects
is over-represented. There is evidence
of specific organic abnormalities in significant numbers of people with
CFS, and credible information representing the entire range of studies should
be presented for completeness.
There is concern that application of the requirements
of evidence-based medicine gives credibility to subjective judgment which
would not be granted by the stricter requirements of empirical evidence
within organic medicine.
The routine screening tests recommended in the guidelines
are insufficient for the reliable diagnosis of CFS.
There is no adequate clinical description of CFS.
Inflexible graded exercise programmes are inappropriate.
Patients should not be pushed to physical or mental exhaustion.
CBT is recommended for all patients with no acknowledgment
that it is inappropriate (indeed potentially harmful) for some patients….it
is unlikely that a single treatment would help everyone. There are people at different stages of illness
and different degrees of severity.
The guidelines do not fully acknowledge the especially
difficult and vulnerable position of children and adolescents with CFS….there
are too many stories of children’s separation from their families because
of mislabelling of CFS as psychiatric and disagreements over appropriate
treatment.
This draft of the guidelines is still considered inadequate
and potentially damaging. It is recommended
that they be withdrawn and redrafted ab initio.
