1998 Clinical and Scientific Meeting

Consumer Address
Ted Shaw

Firstly I'd like to stress the importance of the Guidelines. The guidelines represent the official Australian government view of CFS and will impact on every person with CFS and their doctors. It will determine the treatments that are available from medicare and it will have a large influence on insurance companies and superannution boards in their payment of disability claims.

What I'd like to do in the short time alloted to me, is firstly talk about the basic assumptions that underpin the guidelines, put them into a brief historical perspective, then talk a little about the guidelines view of depression.

I hope you'll forgive my raspy voice - I've had a rather sore, dry throat since coming down with CFS a few years ago. Although my illness began with a viral infection, since reading the Guidelines I understand now that this sore throat and the other symptoms like the profound fatigue and very poor short-term memory, are really my own doing.

The guidelines say that, "..the person's view of the illness and the doctor's behaviour, rather than the viral infection, were predictive of the development of prolonged fatigue."

This confused me a little because I wasn't quite sure what they meant by "my view of the illness," but they clarified this, saying that it was my belief that the illness was purely physical in origin that was the culprit.

The guidelines go on to say that those of us with a long-term disease are inappropriately linking simple notions such as "chronic viral infection" or "chronic immune deficiency" with our illness. They say that such concepts may then actively promote "chronic ill-health" and "life-time disability".

So now I think I understand. It's my belief that the illness is purely physical and my assumption that it's a chronic viral infection that's causing my problems. OK, but what's this bit about the doctor's behaviour. What harm could HE have done?

The guidelines explain this too, stating that a doctor's diagnosis of CFS, "may create or perpetuate myths about aetiology, natural history and treatment rationales which can themselves increase disability." So - it's my belief that the disease is purely physical and my assumption that it's a chronic viral infection, plus the doctor's diagnosis which is causing my problems.

What the Guidelines are saying, ladies and gentlemen, is that we are suffering from a post-infectious behavioural disorder that is initiated by a viral infection or other stressor that causes us to believe that the illness continues on after the acute infectious stage and to imagine that the symptoms are severe and damaging. This belief supposely creates a fear of physical activity, which then leads to prolonged inactivity and deconditioning, which the authors of the guidelines believe are the cause of many of the symptoms.

The leading indicator of this behavioural problem is thought to be the belief by the patient that he is suffering from a physical illness. So everytime that we insist that we are suffering from a physical disease, this is itself evidence that we do indeed have a psychological disorder. The cure for this behavioural illness is believed to be cognitive behavioural therapy, which attempts to treat the faulty view of the illness, remove the fear of physical activity and instigate graded exercise to overcome the effects of deconditioning.

In my opinion, by adopting this view of the illness, the authors of the guidelines demean everyone concerned. It's insulting to those of us with the illness, many with such obvious physical problems as swollen glands, severe headaches, sore throats, cardiac problems, difficulty with swallowing, cognitive and memory difficulties, severe pain, visual and auditory abnormalities, food and chemical sensitivities, seizures and partial paralysis.

It's also insulting to the many doctors who don't view the illness as a behavioural problem to advise them that diagnosing CFS may create or perpetuate myths about the disease which can themselves increase disability. Many of those with CFS would have been ill for months and unaware of what illness they might have before finding a doctor that could provide a diagnosis, making it a nonsense to suggest that it was the doctors' behaviour and the provision of a diagnosis that were instrumental in prolonging the illness.

At the heart of this view is a cynical distrust of the patient, a disbelief of the accounts of pain and fatigue. No amount of superficial 'empathy' can mask this distrust. The Guideline's proposals are a recipe for condescension and paternalism, suggesting that the doctor say to the patient, "Yes, we understand your illness and empathize, but you must realise that your pain and fatigue are subjective, that is, imaginary, and will be alleviated by a few sessions with a psychologist and graded exercise."

These appear to be the 'New Age' Guidelines - the solution lies in simply changing our view of the illness. If true, this should be great news for those with other diseases as well, like AIDS or cancer.

Let me just briefly put the guidelines into historical perspective. In recent years, both the British and Australian government health bureaucracies have become infatuated with 'Evidence-Based Medicine', which is an attempt to focus scarce health funding on those treatments that are shown to be cost-effective. Evidence Based Medicine is one of those catchy little phrases that politicians love. In this case, the health bureacrates like it too because they know that they can determine which evidence is to be considered. Our Health minister, Dr Michael Woolridge, in discussing Evidence Based Medicine at a recent address to the National Press Club, said that "government should be concerned with funding those treatments that are safe, that work, and are cost effective." Now, no one is going to argue with the logic of that, but it's important to keep in mind that Evidence Based Medicine is NOT an attempt to find the best treatments. It's essentially a cost containment strategy.

The great danger of this, of course, is that when making the decisions as to which treatments will be approved as being 'evidenced based', the health bureaucrats will attempt to stack the deck in favour of treatments that are cheap, rather than those which are truly effective.

We have seen a classic case of exactly this in Great Britain recently with the publication of the Royal Colleges report on CFS. Published in October 1996, the report was instigated by the British Health department. They hired 16 people, 8 of them psychiatrists, to report on CFS.

By assigning those particular individuals to the British group, the government knew exactly what sort of report it would receive. I realise that some of you are familiar with the report but let me just give you a few quotes to refresh your memory.

  1. Functional disability may be marked in CFS - the greater the impairment, the greater the psychological morbidity.
  2. There is no evidence that exercise leads to permanent damage or disability in CFS.
  3. CBT is a promising and cost-effective approach that has been recommended for the outpatient management of CFS, although up to 12 sessions may be required. The treatment is safe and acceptable.
  4. The prevention of disability, particularly in primary care, requires encouragement to be active. Prolonged rest is known to be associated with secondary disabiltiy. We are therefore concerned about such advice as the need to reorganise life to avoid unnecessary pressure, or to 'listen to your body.' This appears to endorse the advice often given to sufferers to 'live within your limits', which carries a risk of perpetuating disability.
  5. We emphasise the deleterious effects of unproven illness beliefs such as the fear that any activity which causes an increase in fatigue is damaging. Research suggests that catastrophic or dysfunctional beliefs are common in CFS patients and are related to disability.

That will give you an idea of the advice that the Royal Colleges report provided to the British Health Department. And regretfully, It's clear that the Australian government is following the lead of the British Health Establishment.

The Australian Health Department recently issued an important paper called Fact Sheet Five, entitled, 'Strengthening the Evidence Base of the Medicare Benefits Schedule'. It stated, "Improving health outcomes for the community is the aim of the Federal Government's measure to strengthen the evidence base of medical services funded under the Medicare program. This will ensure that Medicare benefits are paid only for those procedures supported by evidence as being safe, of benefit to the patient and cost effective." And just as the British Royal Colleges report stacked the evidence in favour of a psychological view of CFS, the Australian CFS guidelines attempt to do the same for the Australian Department of Health.

The Australian Government has published a 'Quality of Evidence Ratings' to assist in evaluating medical treatments. But for the purpose of these Guidelines, the authors of the guidelines took it upon themselves to dramatically change the guide to suit themselves. This manipulation of the ratings guide emphasises again the shaky foundation of Evidence Based Medicine. It is a highly subjective process. A group of researchers concerned with correctly rating CFS treatments would have rated the papers VERY differently than did the authors of the Guidelines.

I'd like to now discuss the Guidelines statements on depression.

The guidelines state, "Up to two-thirds of adults with CFS have either a prior or concurrent diagnosis of major depression." They then list several research references. This statement, even allowing for their qualification of "up to two thirds", grossly exaggerates the prevalence of lifetime depression in CFS. In fact, the rate of depression is exaggerated through-out the guidelines.

The problem in measuring depression in CFS is that if the assessor assumes that you have a medically unexplained illness, the physical symptoms of CFS will likely be attributed to a psychiatric diagnosis, making the assessment less than credible. It is a highly subjective process.

For example, if the illness is medically unexplained, like CFS:

If you have a medically explained illness like MS, then the symptoms will not be considered as evidence of psychiatric illness because they are part and parcel of a known physical disease.

Researchers Taylor and Jason have shown clearly that the biases of the interviewer determine to a large degree the prevalence rates in CFS for lifetime psychiatric disorders and major depression. In a study that properly controlled for the physical symptoms of CFS, Taylor and Jason found the lifetime prevalence of major depression in CFS patients to be 28%, which is very close to the rate in the general population.

When you go through the references that Robert Loblay cited for his quote on depression, you find that in almost every one of the papers no allowance was made for the physical symptoms of CFS - all the symptoms were attributed to a psychiatric diagnosis.

The papers that inappropriately attribute the physical symptoms of CFS to psychiatric diagnoses are biased and invalid measures of psychiatric problems in CFS. The guidelines would have been a excellent opportunity to set the record straight on depression in CFS rather than repeat the greatly exaggerated rates expressed in those papers.

I hope that the few points I've made here will help you to understand why we must reject the guidelines. The document is biased, inaccurate and portrays a picture of CFS which is not recognisable by most of us with the disease. This means that there will be even greater misunderstanding of this illness by both the medical profession and the general public. It will give a huge boost to those insurance companies and superannuation boards who have refused disability claims for CFS.

What can we do? If I may, let me make a couple of suggestions.

The first thing we can do is refuse to take part in any more of these studies that associate CFS with a psychological illness. The number of papers of this kind is frightening. The reason there are so many is that they are cheap to do. Just hand out some questionnaires or conduct interviews and you have your data. On the other hand, trying to find an organic abnormality like an immune dysfunction, is very expensive. We are being inundated with psychiatric papers and the most heart-breaking aspect is that it is we ourselves who are contributing to our own downfall. It's time we stopped.

If you are asked to participate in a questionnaire asking about your beliefs about the illness, and your symptoms, please don't fill it out. As I've mentioned, the fact that we have a medically unexplained disease means that every symptom listed will be interpreted as a psychiatric problem. We can't win with these things.

Let me also suggest that you:

Go through the guidelines yourself and list those items with which you disagree. It's not necessary to have a detailed knowledge of the research - your own experience with the illness is just as valid.

Then write a brief letter to Dr Michael Woolridge outlining your views and send the letter to your Federal representative (or present the letter in person if possible) and let him/her know about your feelings towards the guidelines.

One thing we have learned is that no one else is going to fight this battle for us. The general public won't do it and the medical community sure as hell isn't going to do it. It really is up to us.

Some of you may know that the Alison Hunter Memorial Fund has raised quite a lot of money for the University of Newcastle CFS research team. The Fund is now an incorporated body called the Alison Hunter Memorial Foundation. The goal of the foundation is to co-operate with all other CFS groups to help raise funds for research, serve as an advocate for those with the disease and lobby the state and federal politicians.

The Foundation is going to need all the help it can get, not only in terms of donations for research but also for help with providing access to research papers. The State and Federal governments have made it much more difficult and expensive to obtain research information, so if you have access to a good medical library, please let us know. Thanks very much.

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