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by Moira Smith
I am confident that I can speak not only for myself but broadly for many people with Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM) in my comments on this draft. I have “both” illnesses (if they are not one and the same), I help run a Fibromyalgia support group, and I belong to the local CFS/ME Society and attend a chronic pain support group. I run a website for people with Chronic Fatigue Syndrome and Fibromyalgia, and frequently get emails from the people who visit it, asking me questions or sharing their experiences. I am also well qualified to comment on the structure of the draft, as I have a First Class Honours degree in English and was awarded a prize for best thesis.
On this basis I feel that my comments, however negative they appear, are constructive as they are aimed at helping the Working Group produce a good set of guidelines that will be helpful for doctors and patients alike.
Many of the general issues I raise are eloquently addressed in the Health Consumer Perspective prepared by Craig Ellis from submissions sought by the Working Group, and I think it is a great pity that the authors of the draft did not pay more attention to it. I endorse everything that is in the Health Consumer Perspective. The fact that it has been so thoroughly disregarded is most discouraging. It should not have been necessary for any of us to have to write any more on the subject.
I hope that you will now take account of the expert opinions of sufferers of this illness. Please remember that the comments you receive have been written by people who are ill and in pain, and that it has cost us great effort. For me at least, thinking about my illness as this task requires is very upsetting, especially in view of the “all in the head” attitude of much of the draft.
The main issues not covered in the draft that I feel need to be addressed are:
The parts that should be excised are:
while the parts that should remain are:
The draft is full of contradictions. It should be substantially rewritten in a more cohesive manner.
By saying that:
In people with the overlapping syndrome of fibromyalgia the use of symptomatic treatments such as analgesics and NSAIDs, in combination with tricyclic agents, can be effective in improving sleep and reducing pain
the draft implies that people with CFS only should not have pain relief. But myalgia and arthralgia are recognised symptoms of CFS, and many CFS sufferers are in great pain.
I am very disappointed that the Guidelines don’t address this issue. Chronic pain alone, disregarding the other symptoms of CFS and Fibromyalgia, can lead to loss of function, reduced mobility, depression, and the breakdown of relationships. This is surely a key factor in the management of many patients who have CFS and/or Fibromyalgia.
It is my experience that many people are grossly undermedicated and live in unspeakable but entirely unnecessary suffering. A large number of suicides - or, in other countries, occurrences of voluntary euthanasia - are attributable to chronic pain.
Standard strength analgesics such as aspirin and paracetemol are often nowhere near sufficient to treat such pain. Too often, sufferers are put in the position of having to beg and plead for stronger pain relief to restore some quality to their lives. What they are eventually prescribed is insufficient so they have to save them for really bad times - this is known to be an extremely inefficient method of treating pain. Yet the solution is often simple: adequate medication such as opiates, taken round the clock or in slow-release form. Persuading GPs that opiate use is effective, humane and does not turn a patient into a junkie or damage them physically would be a great service.
Even the Pharmaceutical Benefit Scheme rules don’t recognise the role of opiates in treating chronic pain. Methadone has kept me functioning for eighteen months with no increase in dosage. But this (like, I believe, similar drugs) is only available on the PBS in amounts sufficient for more than a few days if a person has cancer or has been prescribed it in hospital. Privately it costs over $50 per month, but if it was a PBS item it would cost pensioners $3.20. Support from the RACP for a change in the rules would be very welcome to those struggling to survive on the Disability Support Pension.
At the end of the Clinical Overview there is the first of a few passing references to “the overlapping syndrome of fibromyalgia”. I think the probable but problematic relationship between CFS and Fibromyalgia should be discussed at more length. If Fibromyalgia overlaps with CFS then it has to be significant and important for doctors to know about. As they stand, these references are in my opinion just confusing.
Later the draft asks, “Does chronic fatigue overlap with other illnesses?” This should read “Does Chronic Fatigue Syndrome overlap with other illnesses?” One of our big problems is the way people confuse CFS with simple fatigue. If the RACP Guidelines can’t get this right, how are doctors and the general public to be educated to understand the huge difference? In fact in another part of the draft it has already been stated (quoting the CDC criteria) that “CFS is distinguished from similar fatigue-related illnesses not only by carefully characterising the fatigue, but also by evaluating other symptoms and signs.”
Assuming the authors do mean Chronic Fatigue Syndrome and not “chronic fatigue”, I would suggest that an opportunity has been missed here to discuss the possible nature of the connection between CFS and Fibromyalgia. It is a confusing and unclear issue but still I feel some explanation is needed.
I think, from the way the draft refers to Fibromyalgia, that the authors tend to the view (or one of them does anyway) that Fibromyalgia can almost be classed as a symptom of CFS. I have come across this idea before: but it is only one of several different attempts to clarify the link. Other authors see CFS and FM as part of a continuum of neurological dysfunction. It would be good to have seen some mention of the newer models of CFS and Fibromyalgia. I am thinking particularly of Dr Mohammed Yunus’ “Dysregulation Spectrum Syndrome”, which provides a framework for understanding the connection between not only CFS and FM but also irritable bowel syndrome, myofascial pain syndrome, and various other disorders. (2)
Dr Yunus is not the only researcher who should have been mentioned at some stage. I am astonished that the Working Group didn’t see fit to describe, even briefly, the exciting research that has been happening at Newcastle University, or the work being done overseas on mycoplasma, viral infections, neurally mediated hypotension etc. Several of these have recently been featured on television. The public is not in the dark, but it is going to look as if the RACP is.
I support the Health Consumer Perspective in the statement that: “Any notion of attributing the illness to a psychological/psychiatric cause is strongly rejected ... as is the notion of somatization.” The focus on somatisation disorders is deeply insulting to people with CFS. We get quite enough disbelief and misunderstanding from friends, family and the general public without our doctors being ‘educated’ to think like this.
“Somatisation disorder” is not an appropriate diagnosis just because physical symptoms have no apparent physical cause, especially in the case a of frequently observed and consistent pattern of unexplained symptoms such we see in CFS. The writers may be aware that the DSM IV definition of “undifferentiated somatisation disorder” is qualified by the observation that in some cases a physical explanation is often found for the symptoms.
The draft states that:
A long-standing history of frequent medical investigation and treatment for unexplained physical symptoms, persistent fear of medical ill-health despite adequate assessment, preoccupation with unusual physical explanations of illness, and persistent rejection of the potential relevance of psychosocial factors may suggest the diagnosis [of somatisation disorder]
I don’t know if the authors of the draft guidelines are aware that CFS and FM sufferers typically go from one doctor to another in search of a diagnosis; or that in some CFS cases, and many cases diagnosed as “Fibromyalgia syndrome”, the onset is not sudden but gradual. When you have gradual onset you have one symptom appearing after another, and each time you visit the doctor you will present that latest one. Eventually, when the symptoms have built up into the characteristic pattern, and have been checked out with xrays, blood tests etc (all with negative results), the diagnosis can be made.
I would add that, in my experience from listening to many people with CFS and/or Fibromyalgia, it is so difficult to obtain a diagnosis of CFS, that warning doctors of the danger of diagnosing it too easily, in mistake for something else, is completely unnecessary.
I strongly object also to the warnings to doctors to look carefully for signs of psychosis, dementia or personality disorder. I would suggest that “historical features” such as depression and alcohol/drug abuse should be significant when any medical history is taken, physical or psychological - although, considering the attitude towards the patient that these warnings imply, it is sensible to warn doctors that “Evaluating a person's risk of suicide is an important task”!
There is a gross over-emphasis on finding any other explanation for the symptoms; CFS is presented in parts of the draft as a diagnosis of last resort. The reader is given the impression that CFS is to be explained away at any cost. Also, to state that:
When patients are being treated for an alternative medical disorder (e.g., hypothyroidism and receiving thyroxine replacement) or a psychiatric condition (e.g., manic-depressive illness and receiving lithium carbonate), a separate diagnosis of CFS is not justified.
is very misleading. I hope that what the author is trying to say here is that if the symptoms can be attributed to another illness that the patient definitely has, it is not necessary to explain the symptoms as CFS. What you are actually saying that noone can have another illness on top of CFS which of course is nonsense. A person can have CFS as well as osteoarthritis, heart disease, bronchitis or any disease.
The suggestion is that any diagnosis is preferable to that of CFS, as in: “the physical examination should be directed towards elucidating alternative diagnoses.” I believe that the emphasis in the CDC criteria on eliminating (not elucidating) other diagnoses, while very necessary for research purposes, is wrongly applied here. They are research criteria, the CDC was not written for GPs diagnosing individuals.
There is a serious error of logic throughout the paper - the fallacy of “post hoc ergo propter hoc” (“after that, therefore because of that”). It confuses the results of having CFS with the causes. Furthermore, it suggests that if you could manage to eliminate some of the results, the cause would disappear.
For example, early on the doctor is advised to “discourage excessive rest and social withdrawal”. These are the results of the patient’s fatigue and feeling ill. We do not give up our social and work activities and lose touch with our friends on purpose; in fact the loss is felt very keenly. If we could do more and have more social contacts, you can be very sure, we would already be doing it. This advice is on a par with telling your patient with a chest infection not to cough, in the belief that the bacteria will thereby lose their virulence.
Another striking example of this lack of logic is:
Management strategies are therefore directed at minimising impediments to recovery, notably, loss of aerobic fitness, disruption of the sleep-wake cycle, intercurrent depression and social isolation.
These aren’t impediments to recovery - they are the very symptoms of the illness! This is what happens to people when they “get” CFS. An improvement in symptoms would arise spontaneously if the patient were to start to get well. To try and cure the disease by eliminating the symptoms is magical thinking.
I would suggest that, in the absence of an effective treatment, the best management strategy would be to attempt to alleviate the severity of the symptoms, to enable the patient to live as full a life as possible within the limitations of the illness. For example I am having success with drug treatment for my gastric problems. The most distressing and disabling symptom, and one that can often be treated very effectively with the right approach, is pain - an issue that, as I have already pointed out, receives far too little attention in the draft.
In relation to physical activity, there are a number of very misleading statements. One again we have “post hoc ergo propter hoc” in the suggestion that people can improve their health through exercise in gradually increasing amounts. This ignores the relapsing nature of CFS. What is a person to do who does, say, six weeks of this sort of exercise and then is confined to bed with worsening symptoms (which in my view is likely)? When they feel better, they will be unlikely to be able to start where they left off - they may need to go right back to the beginning, or start again at an even lower level. The draft itself warns about the dangers of overdoing it:
In the early stages of the illness, many people with CFS make the mistake of putting off chores or social engagements until they feel better, then pushing themselves too hard on "good days" to make up for lost time. The subsequent worsening of symptoms and delayed recovery can establish a cyclic pattern of illness and disability.
And what about those who have Fibromyalgia and/or Myofascial pain? Exercise for such patients should be done under careful supervision by a physiotherapist or similar, otherwise it will definitely make their physical problems worse (1).
“Restoration of a regular, unbroken, night-time sleep of about eight hours” is recommended. Once again you are suggesting that attacking the symptom will result in an improvement in the disease. If anyone on the working group really knows how to restore a healthy sleep pattern and has had proven success (as opposed to just knowing what to suggest) I wish they would share the secret and set it out in the draft guidelines.
I used to be somewhat of a workaholic. I can assure you that I would dearly love to increase both my daytime activities and the amount of sleep I get. I am always trying to do more, but pain, fatigue and sleep deprivation prevent me.
The reader is told that, “most prolonged fatigue syndromes will resolve spontaneously”. I believe to be wishful thinking in relation to CFS - the USA National Institutes of Health fact sheet says:
The course of CFS varies from patient to patient. For most people, CFS symptoms plateau early in the course of the illness and thereafter wax and wane. Some people get better but not completely. Others spontaneously recover.
But then this sentence refers to “prolonged fatigue syndromes”, of which CFS may well be an example, while it is the next sentence which talks of “people with established CFS”. This is surely muddled thinking. To deliberately confuse the two in a way that makes it appear that most people with CFS “just get better” would be dishonest.
“Pathological fatigue can be differentiated from ... neuromuscular weakness as people with CFS can generate muscle strength and endurance when circumstances demand a response ...
I think there is evidence in some of the scientific sources of neuromuscular weakness in CFS patients, and I have recently read some papers that specifically identify disorders of heart and lung function. I am also reminded of the many stories of ordinary people performing great feats of strength when extraordinary circumstances demand it, such as a mother lifting a car when her child was trapped underneath. I don’t know if that particular story is true, but I think it is safe to assume that when “circumstances demand a response” we are all capable of doing things we would not normally do. This doesn’t mean that we would be capable of this standard of functioning on a daily basis.
Reading this exposure draft, I have the impression that two or three people, of differing opinions, have each written chunks of the manuscript without prior agreement about the broad thrust of the finished product. It is internally inconsistent, and no attempt has been made to synthesise the material into a cohesive whole. The result is that where physicians are confused now, they will be much more confused after reading the guidelines, unless drastic changes are made.
The Clinical Overview chapter highlights the fundamental contradictions in the document as a whole. For example: the introduction stresses the need for doctors to recognise the reality of the illness and the suffering it causes, despite the fact that “an underlying disease process cannot presently be defined”. Wonderful words; but later, in the section on “Evaluation”, the reader is told about the unreality of the illness and the likelihood that it is a somatisation disorder.
As another example, It is really ironic that doctors are told in the Clinical Overview that “some people harbour fears that they may be ‘going mad’ “, when later on it is stated that their patients are likely to have a psychiatric illness (ie somatisation disorder).
There is much good advice in the draft, written in a sympathetic manner. Unfortunately this is outweighed and made useless by the cynical, biased and untruthful material surrounding it. At a time when so much research is demonstrating physical abnormalities in people with CFS and its sister disease Fibromyalgia, it is unbelievable that at least one of the authors is pushing the old “all in your head” model of CFS.
The person who, in my opinion, should revise the draft is the person who wrote the last section of the Clinical Overview, entitled “Psychological and social support”. This section recognises that we have “many day-today difficulties”, that our illness is debilitating and may be prolonged, and that the impact on sufferers and their families may be considerable.
I would like to congratulate your webmaster on the beautiful webpage presentation of this draft. It is clear and elegant. It is also accessible to people with a disability and/or people with older computer equipment except for one area: the content of the “boxes”. I know that some of the boxes are diagrams, but even so it should be possible to include a brief text summary with each. It is one of the principles of accessible HTML design that no information should be included in graphic format only. Otherwise, the webpage presentation is good - and how pleasant it is to see information presented without frames.
To conclude, I would like express the wish that this document truly is “an exposure draft” and will be comprehensively overhauled before it next sees the light of day. In my opinion this should be done by a reconstituted Working Group whose members have experience in treating people with CFS and Fibromyalgia and are interested in improving their situation. I hope that a new Working Group can examine the literature again without bias, and redraft the document taking account of comments received and the Health Consumer Perspective, which has hitherto been so disregarded.
(1) Sharon R Clark, “Prescribing Exercise for Fibromyalgia Patients”, Journal of the American College of Rheumatology, Vol 7, No 4, December 1994.
(2) Muhammad B. Yunus MD, Professor of Medicine, University of Illinois College of Medicine at Peoria, “Dysfunctional Spectrum Syndrome: A Unified Concept for Many Common Maladies”, in Fibromyalgia Frontiers, the newsletter of the Fibromyalgia Association of Greater Washington Inc., Vol 4 No 4, Fall 1996. [Dr Yunus since substituted “dysregulation” for “dysfunctional” in the name of his theory]
Moira A Smith
February 1998
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Moira A Smith - Canberra, Australia
last revised 28 February, 1998