M.E. / C.F.S. Society (S.A.) Inc.

ATT: RACP Working Party — Chronic Fatigue Syndrome Project

The ME/CFS Society (SA) Inc. thanks the RACP for copies of the Chronic Fatigue Syndrome Guidelines Revised Draft 2001. It is unfortunate, however, that we have been only given 1 month to comment on them — as a result this response has been rushed and is no where as thorough as it could have been. It is disappointing that such an unprofessional, un-collaborative approach should appear to be taken with regard to such an important document.

Persons with this debilitating condition and clinicians treating them deserve something much better. It is indeed a shame that this project, at a considerable cost to the taxpayer, has bumbled along only to produce this. In this document we shall argue that this whole project be re-evaluated for ethical, legal, scientific and professional reasons.

What do we believe about Chronic Fatigue Syndrome?
To understand our reaction to this document and for us to communicate clearly it is helpful you know where we are coming from.

We believe that Myalgic Encepathomyelitis (ME) / Chronic Fatigue Syndrome (CFS) is an debilitating condition. There is no diagnostic test, no curative treatments and the aetiology is unknown. Often ME/CFS is brought on following a viral infection, or chemical exposure. In no way does it have a psychogenic causation. Symptoms can cause varying degrees of impairment, some are mildly affected, others are virtually bedridden — some have died from the disease. Although some symptomatic relief may be found, recovery from the condition is indeed spontaneous — but it seems that many do not fully recover, and carry a measure of disability for life. Personal motivation and determination plays no part in the speed of recovery. The duration of the condition can vary from a year to a lifetime. In research we would tend to support the use of the Fukuda (1994) definition — but would actually prefer something a little stronger to ensure only genuine ME/CFS patients are selected.

What do the guidelines state about CFS?
A careful reading of these guidelines will show an inconsistent, double-mined portrayal of the condition.

At first glance these guidelines appear supportive of our understanding. The guidelines correctly state that the current internationally accepted research definition is the Fukuda et al. (1994) definition. They clearly indicate the illness is not psychosomatic — that external pathogens (p19) are involved in it's onset. They state the need for a positive diagnosis, and for GPs to be understanding of their patients. The guidelines clearly stress that CFS can be quite disabling. This document categorically states that the condition is distinct from depression, although reactive depression may be present. It stresses that treatments focus on symptomatic relief and that recovery is spontaneous. We commend the following statement on page 16:

It may seem like there is considerable common ground, however, throughout the draft guidelines there is an undercurrent that undermines these concepts. The 'underlying message' is that although an external pathogen initiated the condition, the disease can be psychologically propagated. Whilst you may argue we are reading that into the document, we believe that this conclusion will be drawn by many, because of the lack of non-psychotherapy management options, and the number of conflicting statements.

Such an emphasis is placed on exercise that we are concerned about readers losing perspective. The fact is that any chronic illness, which reduces functionality, will inevitably lead to some degree of physical de-conditioning. We forget which is the causal factor, and which is the product. The level of debilitation caused by the illness is qualitatively different from the debilitation caused by the de-conditioning; de-conditioning per se is not the end of the world.

The patient's responsibility to under-goe exercise, sleep therapies and CBT are emphasised so much that one could easily come away from these guidelines with the idea that the ME/CFS patient must exercise and have good sleep hygiene in order to get over their CFS. The implication then becomes that the person who doesn't appear to be doing these things isn't trying to get better. This is not the case. As people with ME/CFS recover, they find they can do more and so their activity levels increase.

We are concerned with the down-playing of the chronic-nature of the condition. If a condition is chronic, sufferers need to be empowered by being told so. It enables them to set appropriate goals and pace themselves. This document suggests people can resume acceptable levels of functioning in 3-6 months (p36), but also quotes a study that the illness lasts for 2-4 years (p50) and effects them for 1-9 years. Where is the consistency here?

Theoretical problem: Fatigue and the Nature of CFS
You will note our insistence on referring to CFS as ME/CFS. You will no doubt know that there has been a raging debate amongst the ME/CFS community over the name of our condition. Suggested names have been: Neuroendocrine Immune Disorder, ME, Polyalgic Asthenia, Nightingale Syndrome, and Ramsay's disorder.

CFS is not liked because undue emphasis is placed on fatigue to the exclusion of the other major symptoms. The confusion we wish to avoid regards fatigue — although it is the common symptom between sufferers, it is not helpful to define the condition by it. Although fatigue is the common symptom in people with CFS, it is not always the most severe or disabling — it is certainly not the sole disabling factor in this condition — chemical sensitivities, muscle pain, neurocognitive impairment, bowel dysfunction can be equally disabling.

ME/CFS is a multi-system and multifactorial illness. Stigmitizing it by the common symptom of fatigue began in (1988)- before which it was just called 'ME'. This had the apparent advantage of making it more accessible/understandable to people, but it labelled the condition with the main symptom. This has reduced awareness of the other symptoms, and removed the focus from a symptom-set to and individual one.

We reject, therefore, the model used by the authors of CFS lying along a continuum of fatigue states with different severities p16. We reject the assertion that ME/CFS is merely a fatigue state. We acknowledge the symptoms of ME/CFS on their own are extremely generic, and hence there is overlap with many conditions, but together they form a package — one which admittedly may have several sub-groups. It is completely arbitrary to link conditions on the basis of a common symptom. To invent the construct of 'fatiguing' conditions is therefore but one methodology — but it is not a logical necessity that we do so. For example, apart from fatigue what is similar about depression and anaemia? Once the diagnosis is made, we realise we are dealing with two completely different diseases.

The 'fatigue states' perspective dove-tails with Cognitive Behaviour modelling.

Cognitive behaviour modelling whishes to incorporate all the products and results of ME/CFS back into the condition itself. Both these models thrive on reducing ME/CFS to fatigue and equating the two.

Please consider the possibility that ME/CFS might just be a specific disease with pretty run-of-the-mill symptoms — making it initially hard for sufferers to be picked out of a crowd. All round the world research is showing physiological problems in persons with ME/CFS indicating real damage/disruption to many of the systems in our bodies. Recent neuroimaging studies are showing up significant brain dysfunction in ME/CFS patients — evidence on ongoing physical impairment. As we improve our understanding of the condition, we can improve our research definitions to better select ME/CFS sufferers, you will be able to see a clearer demarcation between persons with ME/CFS and persons with generalized 'fatigue.' All our jobs will be a lot easier then.

In this document, the construct of 'fatigue states' is a smoke-screen to try to equate CFS with chronic fatigue and make it non-specific. These guidelines play upon that blurring of definition — the implication is that treatments which reduce fatigue are actually fixing the ME/CFS. This, of course, not true. We are not dealing with just fatigue by itself. In fact, some of the proposed treatments may exacerbate ME/CFS.

Consider this argument. Chronic Hepatitis causes fatigue. De-conditioning increases fatigue. Graded exercise prevents de-conditioning; therefore it is vital for Chronic Hepatitis sufferers to undertake graded exercise to manage their Chronic Hepatitis. Pretty ridiculous reasoning? With this example there is no confusion between hepatitis and fatigue — one is a product of the other. Is it equally clear that fatigue is a product of ME/CFS but not ME/CFS itself?

What does the RACP believe about the nature of CFS?
Does this document truly portray ME/CFS, or is the landscape blurred? Does the document portray the condition one way, then contradict/undermine this view in other places? Are the models helpful, or do they actually cause the confusion? You need to decide whether this document has selectively chosen management options, and ignored many others.

This document cannot have it both ways. Either we have a genuine condition — with pathogenic causation, spontaneous recovery and which is chronic — or we don't. If we do, then it needs to be stated clearly, and not undermined by innuendo of it being psychologically propagated. If our condition is chronic then we deserve compassion and understanding, not to be bullied into removing so-called impediments to recovery. Are people with other chronic conditions subjected to such levels of suspicion and mistrust?

Discussion relating to behaviours which may generate similar symptoms to ME/CFS belong in an appendix. In doing so there is no confusion between recovery from a disease, and re-establishing a healthy lifestyle once you have recovered.

Who is this document aimed to help?
At the beginning we are told: "These guidelines are primarily aimed at assisting general practitioners" page 4

Our contention is that these guidelines do not help GPs and other practitioners who would not otherwise know anything about the condition. This document grossly under-informs GPs about the medical nature of the illness, and is biased towards psychotherapies in its assessments of what can be done to help patients. It is therefore unhelpful.

Selective Information
The guidelines state: "there are no abormal physical findings in people with CFS". This ignores symptoms such as irritable bowels, poor concentration, & orthostatic intolerance to name just a few.

These guidelines fail miserably at a point most critical — they do not outline the international research currently being conducted into ME/CFS. This is surprising for a condition whose aetiology is unknown. Why would the RACP not want GPs and other clinicians to have an overview of the different findings and theories on this condition? Are the authors trying to down-play physiological abnormalities in people with ME/CFS?

Please note that the following authors are recognised ME/CFS researchers and they have been either not quoted or selectively under-quoted:- Rowe P.C., Bell D., Komaroff A.L., Lapp C., Moldofsky H., Dowsett E.G., Simpson L.O., Costa D.C., Suhadolnik R.J., Mena I., Demitrack M.A., Natelson B.M., Bombardier C.H., Snow. P, Woodward R.V., Goldstein J, Klimas N, Boda. W.L, DeLuca J., Lerner M., Dunstan H., Haier G., Barrows D.M., McGregor N., Baker E.L., de Meierleier K., Bianchedi M., Miller C. S., Ziem G., Bell I., Winder C., Little C., Walden R.J., Martin J., Richards R.S., Jason L., Burnet R., Pearn. J., Scroop. G., Chaudhuri A., Behan P.O & W.M H., Jadin C. L., Hyde B., Roberts T.K., Marcel B., Piirmohamed J., Butt H.L., Tirelli. U., Goudsmit. E., Chester A.C., Spurgin M., Schwartz R.B., Nixon P.G., Sandman C.A., Corrigan F.M. et al

What of the large and growing literature on ME-specific neurological, immunological, endocrinological, cardiac, heaemotological and other abnormalities in ME/CFS. What of MRI, PET and SPECT Scan peculiarities, aberrant urinary markers, ion channel abnormalities and the high incidence of orthostatic hypotension (OH) and of related circulatory and haemotological problems? Are they trivial?

When it comes to work done here in Australia, why has only work being done in Sydney on sleep therapy been added? Wouldn't it be good for practitioners to know that there is research being done in Newcastle, Brisbane, Adelaide and Perth into ME/CFS? Wouldn't it be good if some of this work was also referred to? And what about the two International ME/CFS conferences — Brussels (2000) and Seatle (2001) — or the 1998 and 1999 Manly ME/CFS Conferences? No mentions of or references to these for GPs to follow up.

Why are these findings deemed un-important? Clearly the authors are so enamoured with their own theories, are so confident that they are the answer, that everyone else's work isn't worth mentioning. But we were led to believe the guidelines:

It is an absolute disgrace that this document and 'best practice' appear in the same sentence. This document disempowers GPs through under-and-mis-information.

Management of ME/CFS
The following statement sets the emphasis of the document toward management:

Firstly, whilst no pharmacological agent has been shown to directly treat CFS, there are a number of options that work for some people. Given we are still in the early stages of understanding this condition, it seems unwise to adopt a 'wait until things are proven' attitude. GPs need to be informed about a whole range of options — with, of course, the appropriate warnings. Whilst on one hand we agree that there is no point embarking on a phrenetic pursuit of one treatment after another, we can't agree that it is wise to abandon attempts to find relief. There is a certain let-down if a practitioner says 'well, there is nothing we can do' as opposed to 'let's give this a try, I can't promise anything, but it can't hurt.' This tack doesn't give the patient false hope, yet gives them a focus.

To take the stand you have of focussing on 'minimizing impediments to recovery' is flawed and unduly negative. Management strategies should be directed at improving quality of life by treating symptoms — and encouraging lifestyles that help people 'get the most out of themselves' and achieve a 'maximum sense of well-being' under the circumstances. A holistic approach must be taken to this. The unduly defeatist manner in which this is approached, wrongly implies that nothing can be done symptomatically.

This approach also takes the patients focus off the here and now, and has them working towards an event that may not occur for several years. This is an unnecessary burden / pressure. Let the patient come to terms with resuming a normal lifestyle once the underlying disease has gone. There is no rush. Why insist on things such as having 8 hours sleep a night?

In the mean time, the person with ME/CFS, along with their GP, must find their own level of physical and mental activity, sleep patterns and durations, and time spent socializing that is best for them. The balance of these things will be found at a point which enables them to achieve the best quality of life, without exacerbation of their ME/CFS.

These guidelines make many references to the need to avoid — excessive rest (which we endorse) — but why do they not spend equal time warning people against overdoing it and making their condition worse? We are not just talking about exacerbation of symptoms, we are talking about relapsing — a qualitative increase in severity of the underlying condition. Is it too much to ask for a balance in this regard?

Impediments to Recovery
Further to the previous point, we wish question whether "loss of aerobic fitness, disruption of the sleep-wake cycle, intercurrent depression and social isolation" are actually impediments to recovery. Where is the support for this statement? There is no proof of this. It is a long bow to draw and can only be done if we confuse fatigue with ME/CFS. Remember that recovery from ME/CFS is spontaneous over time. Cause and effect are once again confused.

We ask for all statements implying that these factors are impediments to recovery be removed if they cannot be substantiated by double-blind placebo-controlled trials (as you suggest should be the benchmark).

Exercise
We maintain that this document is dangerously imprecise about exercise therapy. If the following is true:

p6 Don't the following statements seem a little confusing?

The authors of this document are sending mixed-messages. If a person can be so sick their symptoms can be exacerbated by relatively minor activities, then how can such unqualified, emphatic statements about the efficacy of exercise be allowed to follow? There is no sense of the chronic-nature or the severity of the illness. Taken out of context, this document could be used to make any person with ME/CFS undergoe graded exercise to the detriment of their health.

We ask that the RACP remove the following comment "Graded exercise programs have been shown to be safe for people with CFS" p9. This statement is out of place and unsupported. If a ME/CFS sufferer is made to undertake graded exercise as a result of this statement, and their symptoms are worsened or they relapse, then the RACP could be held accountable. It only takes one case to refute such a categorical suggestion.

There is no justification for the over-emphasis on exercise in this document. It is commonsense that sufferers should remain as active as possible, but any understanding of what is possible should not be abstracted from the chronic, debilitating nature of the illness. Nor should any confusion be allowed in which one might be led to believe that exercise will improve the ME/CFS, or hasten its natural improvement.

When managing this condition it is a patients right to spend their energy as they see fit — putting it into the sort of exercise that will increase fitness may not achieve the best quality of life for that person. Eg. Students may choose to do minimal exercise because it exacerbates their cognitive dysfunction and prevents them from undertaking their vocation.

If a condition is chronic and debilitating, physical de-conditioning is inevitable. Several studies show that the deconditioning of ME/CFS sufferers is not different to sedentary healthy people (sorry — not enough time to provide references). So why pick on us? Since when did lack of fitness become a crime? As we recovery from ME/CFS we'll have more energy to do things, and our lifestyles and fitness will reflect that.

CBT
The issue of CBT is moot. Simple CBT — illness education, encouragement to be as physically/mentally active as possible and encouragement not to socially withdraw are commonsensical, and surely can be carried out by GPs. Also patient support groups such as ours make these emphases. There is little need for formalised CBT in most CFS patients.

We strongly dispute the unsupported assertion that studies have shown CBT to be helpful for ME/CFS patients. Very few CBT studies actually use the Fukuda 1994 research definition that the guidelines themselves acknowledge to be the international standard. Patient groups worldwide have condemned most CBT research for that reason. These studies have mostly been conducted with a much weaker research definition such as the 1992 Oxford definition. The problem with weaker definitions is they mix in plain fatigued patients with ME/CFS patients. They also tend in these studies to only look at mildly affected people — they are not representative of the ME/CFS population — and this is often not made clear.

CBT study outcome evaluations are problematic even in the eyes of some researchers (Deal 1997). They involve the patient to self-evaluate their mood and physical capabilities. Such self-assessments are extremely subjective. We contend those suffering fatigue may derive benefit from CBT, but genuine ME/CFS patients will generally not because there is an organic basis to their fatigue that neither activity nor positive thinking will reverse.

We would like to see CBT studies based on the Fukuda et al. (1994) definition before we evaluate CBT.

We would argue that more funding needs to be given to patient support groups such as ours, to enable us to provide more meetings, information sessions, and encouragement to persons with ME/CFS. These services will help people with ME/CFS get the most out of themselves in the here and now. There is a cathartic need to share with others who have a similar disability — we provide the context for this need to be fulfilled.

Groups such as ours do not encourage malingering, wallowing in depression, or excessive rest; and our focus is on persons with ME/CFS getting the most out of themselves through careful self-management. The guidelines should pay more attention to recommending people get involved in support groups.

Issue of Biases
This document, because of the models used, is biased towards behavioural/psychotherapies to the exclusion of a great deal of research findings, medical knowledge and medical treatment options.

It is overly biased towards the symptoms of sleep disturbance and fatigue. Yet CFS involves a broad range of symptoms such as irritable bowels, impaired cognitive function and muscle pain. Why are these treated differently? Why are these not classified as impediments to recovery?

The authors fail to mention dietary modifications and many other treatments which have positive effects on many patients. Whilst some of these may not yet be proven, we are in the early days and thus they are not yet 'proven to be wrong.'

Overlapping Conditions
This document fails to list Multiple Chemical Sensitivity and Gulf War Syndrome as related illnesses. (The Fukuda et al. 1994 CFS research definition mentions Multiple Chemical Sensitivity Syndrome.) Are the authors trying to suppress knowledge about related conditions which don't fit their models and illness-understandings that well? We were led to believe that this document incorporated all available information at the time of writing.

Chemicals
Sensitivity to organophosphates, pesticides, herbicides, solvents or other chemicals are not listed as initiators or potential exacerbators of ME/CFS. In fact no references are made to chemical sensitivities at all. This is strange as a significant proportion of ME/CFS sufferers report sensitivity to certain chemicals and food intolerances.

A study done at the University of Newcastle has shown persons with ME/CFS have higher levels of pesticides than healthy people.

We cannot help thinking that this document wants to suppress all references to possible pathogens and physical explanations of the illness, so that cognitive/behavioural factors get all the attention.

Confusing Comment
We would ask that the following comment be removed:

We feel that this comment is insulting and undermining. If this condition is not psychogenic as the draft suggests, then what is the underlined statement in there for? It is another example of the document sending mixed messages. Does this mean you do not believe ME/CFS is purely physical in origin?

Sleep
Since when was this document a forum for the authors' personal theories to the exclusion of hundreds of others?

Just because some symptoms can be recreated by disturbing healthy people's sleep patterns (see quote) — how can one reverse the argument to suggest that fixing persons with ME/CFS's sleep patterns will remove the symptoms? How can a professional document be published with such poor reasoning?

The authors have confused cause and effect. Our sleep patterns are abnormal because of the ME/CFS.

The following suggestions are far too prescriptive:

They fail to take into account the range of severity of ME/CFS, and pose a two-fold legal problem. Persons with ME/CFS may be denied claims because they are sleeping more than 8 hours a night; they may be forced into sleeping less and their health could be jeopardised. If people are put in this position, based on these guidelines and are made worse by it, then the RACP could be open to litigation.

Scholastic quality of document
No references are given to the following assertions.

How can a professional document make sweeping statements such as these without backup? These comment are not asides, but form part of the argument for the main two suggested management strategies to this condition. They appear to add considerable weight to the argument, but they are not fact. We argue that these are both unsubstantiated theories — no more or less plausible than a hundred others.

Throughout the document there appear several (*) missing references. We requested we be given them and we were told they were not yet available. How can a document be put up for review when there is not a complete list of references?

Previous comments have highlighted the biased nature of the referencing, and the bias of the management suggestions to the psychological and the suppression of the physical.

Who controls this illness?
There is clear bias towards the psychiatric/psychological fields of study in these guidelines. In fact, there is a bias towards research being conducted in and around Sydney — with the sudden inclusion of a series of sleep studies — to the exclusion of important international research, and research being done in Newcastle, Brisbane, Perth and Adelaide into the physical disruptions in ME/CFS.

The models used, the fatigue-orientated illness-understanding, the insistence that the condition is an illness not a disease, the bias towards CBT and sleep / behaviour therapies and the suppression of much medical/research information all serve to keep this condition in the hands of psychiatrists/psychologists AND validate the need for that sort of research over and above research exploring the physical basis of the disease.

We can't conclude without specific reference to the inclusion of 'Neurasthenia' as a related illness to the exclusion of Multiple Chemical Sensitivity and Gulf War Syndrome. How is Neurasthenia possibly related to a condition with a pathogenic causation?

Just why are a group of Sydney researchers calling for the re-acceptance of the name: Neurasthenia — a psychiatric term? It does not escape us that it is an obvious ploy to keep ME/CFS associated with the psychiatric fields.

We deserve better
We deserve better than to be the object of a power game for jurisdiction over our condition.

People with ME/CFS need government funding going into researching the organic basis of this condition, and into the assessment of different treatment options. Our support groups need funding. We need GPs to be informed about the real state of our understanding of this condition — not a selective serving with minimal medical content.

We deserve an expansive international view on this condition; not a harbour-view.

Economic rationalism never wins in the end. In the short term you may screw a few of us, but in the long term you screw yourself.

Repercussions
Should these guidelines be accepted they will be disastrous for people with ME/CFS — people who have suffered greatly over the last 20 years because of non-recognition of the illness.

One concern is that, in legal cases all round the country, person's with ME/CFS will be refused benefits and rights they deserve on the basis that they aren't undergoing formal CBT or sleep therapy, or they are sleeping more that 8 hours a night. The document will do more harm than good to our members.

The lack of clarity and consistency in the document means anyone could take anything away from it.

Our major concern is that GPs who know nothing of the illness will not be medically wiser by reading this document — where are book, website, & research references?

In conclusion
Along the way we have listed ways in which this document fails to do ME/CFS justice. We have highlighted flaws in it from scientific, legal and professional / scholastic viewpoints. This document sells practitioners and persons with ME/CFS short — it doesn't befit an illness with unknown aetiology. It fails to give GPs the right tools to understand the illness, lacks self-consistency, confuses cause and effect, is overtly biased towards 2 of the many symptoms, and is out of step with international thinking on this condition. Above all it unfairly targets sufferers of ME/CFS, placing them under undue pressure to be involved in sleep and exercise therapies — and opens the door for a wrong interpretation that these will improve patient's ME/CFS. The document sends mixed-messages about the nature of ME/CFS, and we reject the authors' fatigue-states model of the illness.

The lack of peer-review processes undermines our confidence that this project is free from hidden agendas separate to the interest of sufferers of ME/CFS and clinicians of people with ME/CFS. We do not enjoy our health being jeopardised by petty power struggles.

We would ask the RACP to re-asses this project. After all that has transpired over the last 5 years, it would be best if this attempt was scrapped and we started again. We would suggest an impartial person be appointed to chair a brand new attempt at it. We would prefer it if the working party consisted of people with clinical experience in treating ME/CFS patients. We would ask that sufficient resources be given to the project, so that there is time and funding to undertake an extensive peer review process at the end of draft stages. These measures would ensure best practice.

Yours Sincerely,

Paul Leverenz, B.Sc.
On behalf of the ME/CFS Society (SA) Inc.

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