ME/CFS Australia (Victoria) has offered to take over the management of ME/CFS Australia and to drive the national agenda forward. Specifically it has agreed to commission its CEO to work on National issues. As the most viable ME/CFS association in the country, with paid staff, significant revenues and cash reserves, ME/CFS Australia (Victoria) is eligible to receive Government funding. It has offered to resource the management and administration of ME/CFS Australia and to be more involved in its planning.

ME/CFS Australia have accepted this offer and the board of ME/CFS Australia have appointed ME/CFS Australia (Victoria) CEO, Penny Abrahams, to be its CEO. Three new members have been appointed to the Board. This moves the National Association Board towards stronger representation from all States, Territories and AHMF. Mr Simon Molesworth AM QC, President of ME/CFS Australia (Victoria), will assume the role of chair of ME/CFS Australia, overseeing a transitional period. Mr Paul Wood has been appointed the Treasurer. The previous Directors remain.

ME/CFS Australia remains the peak body representing all Australians affected by ME/CFS. Every State/Territory Association has a Director’s seat on the board open to them to participate in the decision-making of the National body. We welcome and encourage all State Societies to join with us in moving the National Agenda forward.

With this kind offer from ME/CFS Australia (Victoria), and by pooling resources, we look forward to expanding the visibility and role of ME/CFS Australia. We hope this will energise the movement across the country and look forward to a day when there is a vibrant Association in every State and Territory to support people affected by ME/CFS.

Yours sincerely,

Paul Leverenz
Outgoing Chair, ME/CFS Australia

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ME/CFS and Psychology

We discuss the role of psychology in ME/CFS and acknowledge the important role that psychologists and psychiatrists can play in assisting some people cope with ME/CFS. We ask for clarity concerning the role of psychology and ask health practitioners to begin to take into consideration the iatrogenic harm[3] that comes from a healthcare system which has not always dealt well with this ‘emergent’ condition. Public health officials, psychologists, psychiatrists and consumer groups can work together to provide a ME/CFS narrative that brings healing to patients.

Any chronic health condition assaults the psychology of the patient, and ME/CFS is no exception. ME/CFS can be as disabling as MS, AIDS, and cancer-related chemotherapy. People who have led otherwise active lives, are confronted with new limitations and they need to adjust to them. There are also symptoms which are part of ME/CFS which are psychologically distressing and any person with ME/CFS must develop coping strategies to deal with them. As with any chronic condition, social isolation can be profound for the person with ME/CFS. Taken in totality, we can understand the shock to a person who develops ME/CFS. Different people will have different coping mechanisms, and so will require different treatment responses. Before discussing specific therapies and their applicability we will make some general comments on psychology and ME/CFS.

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It is not clear whether psychological factors are a risk in developing ME/CFS. It was thought at one stage that ME/CFS was an ‘over-achievers’ disease. As a stereotype that view has been discredited—ME/CFS affects both ‘A’ and ‘B’ type personalities. That said there is some evidence to suggest that prior to onset, some ME/CFS patients experienced prolonged psychological or physical stress. (We know that either of these will weaken the immune system.) It is possible that there is some correlation between psychological factors and a probability of developing ME/CFS in a subset of patients. However, this may be a second-order association where a weakened immune system is the first-order risk factor.

The Australian ‘Dubbo Infectious Outcomes Study’[4] tracked the course of people’s health following infection. This study showed that the only significant risk factor for the development of CFS was the severity of the acute infective illness. Psychological variables were not a predictor of which patients were diagnosed with CFS after six months and which patients recovered.

We hypothesise that ‘A-Type’ personalities may find it harder to reduce their activity levels due to their driven nature. This may make it more difficult for them to manage their condition as they are likely to attempt to do too much when they feel well, resulting in boom and bust activity cycles.

The role of psychology in the pathophysiology of ME/CFS is still being contested. Given that the pathophysiology is not yet proven, we can only postulate based on the balance of probabilities. The majority of ME/CFS patients have a sudden-onset. ME/CFS symptoms are present immediately in many cases, although not necessarily at their worst. The existence of even a significant minority of sudden-onset patients with ’normal’ psychology is all that is required to prove that ME/CFS can be present independently of psychological ‘dysfunction’. Given this is the case, we have a logical basis for insisting that some distinction must be made between the underlying pathophysiology of ME/CFS and the psychological response/adaption that follows post-onset. This is not to deny that the two will interact in the long-term ill and the distinction may become blurred. (Without maintaining a distinction, biopscyhosocial models of the condition become nonsensical).

The key discussion point concerning psychology and ME/CFS is whether psychology affects recovery. Some have postulated that ‘CFS’ is maintained by the patient’s psychological (and consequent behavioural) response to illness. ME/CFS Australia does not believe that the majority of ME/CFS patients learn ‘helplessness’, develop ‘avoidance behaviours’ or adopt a ‘sick role’—no more or less than any other condition. Such notions as generalisations are insulting to the many people with ME/CFS who want nothing more than to be healthy and continue to contribute to society.

With our current knowledge at such poor levels, we must attribute recovery to both good management and ‘luck’. Some people’s bodies are able to resolve the condition—we don’t know­ how­—while others, despite their best efforts, are not so fortunate.

While it is frustrating for both patients and their clinicians when patients do not make progress, patients should not be blamed for not getting better. It has often been the case throughout medical history, that when a condition is poorly understood, some medical professionals turn on the patients and label them with a psychiatric diagnosis. This is a low form of bigotry that has devastating consequences. Even if the clinician feels that some patients are contributing to their disability, it is not grounds for stigmatising the entire patient group.

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Psychological Assistance for People with ME/CFS

As with any chronic condition, people with ME/CFS may benefit from supportive counseling. Patients must learn to adjust their lives to work within new boundaries. There is grief associated with loss of a ‘former life’ and also emotional distress if family members, work colleagues and friends doubt the reality of their condition.

The level of supportive counseling required will depend on several factors including the severity of the condition, the life circumstances of the individual and the individual’s personal ability to cope with change. The family GP can often provide sufficient supportive counseling, particularly when the patient is well equipped to deal with their altered circumstances. Where the patient is under severe distress, referral to a psychologist or psychiatrist should be considered.

Many with ME/CFS experience altered mood as part of the condition. Mood disturbance is common when peoples’ symptoms worsen, especially during relapse. Both the biological disturbances in the endocrine and immune systems of people with CFS (including altered cytokine activity), as well as the obvious emotional reactions to the devastation of the illness, explain altered mood states. These factors also increase the risk of developing a concurrent depressive illness. We note that the mood disturbances in ME/CFS are distinct from the patterns seen in depression, although they do have some commonality. Severe mood disturbance should be treated by a psychiatrist.

We recommended that patients are referred to clinicians that are familiar with the onset, diagnosis, and treatment of people with ME/CFS. Patients should not feel that referral to a psychologist is an admission that their condition is psychological in nature. Clinicians should recognise that it is difficult for the patient to make this step, particularly if they have had to fight for the legitimacy of their situation in the face of derision from family members and friends. We cannot stress enough that the stigma of having ME/CFS can be as damaging as the physical symptoms.

Referral of patients to support groups can be beneficial. Official support groups in Australia encourage patients to take responsibility for their health and attitudes. Patients are encouraged to actively manage their condition and self-management courses are provided to assist patients in this regard.

Patients who wish to cope better with their ME/CFS may wish to be referred to a psychologist or psychiatrist. A tailored program can be beneficial. It is a sign of strength to seek assistance of this nature and patients need to feel safe in doing this.

Psychologists and psychiatrists use a therapy called Cognitive Behaviour Therapy (CBT) which is a means for patients to understand their thought processes, emotional responses to disease and the coping behaviours they develop, both good and bad. There has been some debate concerning CBT which needs to be addressed.

CBT

Many patients reject CBT as being unnecessary and possibly harmful. On the other hand, a small subset of patients do report benefits from CBT. This is substantiated by research data which showed improvement in 40% of patients as opposed to 26% in normal clinical care[5]. There are two confounding issues here. First, CFS is a broad diagnosis so it’s hard to pinpoint the specific subsets that will benefit from any particular therapy. Second, different people mean different things by CBT, both patients and practitioners, and the attitude behind it is also critical.

Some see CBT as a tool whereby the patient is coached to understand their responses to their illness, both psychological and emotional. Patients can be taught to develop greater mental strength and improve their coping and self-management skills. It is an adjunct therapy, not a treatment for ME/CFS.

The second view of CBT is predicated on the hypothesis that people with ME/CFS develop maladaptive responses to their illness, taking on a ‘sick role’ and developing an unhealthy fear of activity. CBT is required to reprogram negative thinking patterns which will ultimately lead to changed behaviour. Much of the behavioral research literature is imbibed with this underlying hypothesis.

For most patients the assumptions of the second view do no hold. As with any chronic condition, it is likely that some patients develop maladaptive responses to chronic illness. But this is going to be true of all chronic disease. We do not believe that the majority of ME/CFS do develop inappropriate coping mechanism. Unfortunately many who recommend CBT have left their commendations very general, tarring the entire ME/CFS patient community as being dysfunctional people who psychologically maintain a physical condition. Commonsense should prevail.

Where the patient clearly demonstrates ‘normal’ psychological responses given their health and wider circumstances, referral to a psychologist is probably not necessary—certainly not a frontline management approach. Insisting on CBT and psychiatric interventions for intelligent, motivated people with a ‘normal’ psychological profile is insulting and potentially damaging to them, both socially and psychologically. This is perhaps why some patients have reported that CBT has made them worse.

While it could be argued that CBT administered by a sensitive practitioner can do no harm, it is potentially a waste of resources and taxpayers money. Even if it does some good, the cost-benefit ratio for the moderate to severely ill patients must be considered. The marginal benefit may not be worth the cost (effort) of participating in the ‘treatment’ and there is an opportunity cost of not pursuing other avenues.

Comment on the Research Evidence

As you would expect with any ‘emerging’ condition, there are differences in opinion as to its cause and nature. The research literature contains a wide variety of hypotheses. There is a behavioural school of ME/CFS research which hypothesises that psychology has a major role in the maintenance of ME/CFS. In fact the research literature has been flooded with studies in this field.

CBT has been moderately successful in providing some benefit to patients who have been selected either under a chronic fatigue or the broad Fukuda research definition of CFS. These patients have typically been well enough to attend a tertiary care facility. As such they do not represent the entire ME/CFS population and the generalising of these results is not appropriate. Many CFS patients report harm from CBT but the specific reasons for this have not been studied.

It is the opinion of ME/CFS Australia, that people with chronic fatigue are more likely to respond to behavioural research as this broader and much larger group (at least three times[6] larger) is more likely to include people with mental and emotional disturbance. Such people are likely to benefit from individual coaching from a specialist.

The fact that behavioural research has shown some moderate benefits does not prove some of the underlying hypotheses of the behavioural researchers. E.g. that dysfunctional behaviours are present and delaying recovery. It may be just that people are leaning better self-management techniques (which is a good thing) or that some just get better over time in the natural course of the condition.

We would hope that the medical community makes it a priority to outline the criteria which clinicians can use to assess whether CFS patients may or may not benefit from CBT.

Factors to Consider Concerning Psychological Therapy

Recommendations for psychological assistance should take into account factors such as type of onset, patient history, length of illness, time until diagnosis, past treatment by the medical profession and the individual characteristics of the patient. It is up for the medical profession to determine specific recommendations, but we think it reasonable that patients in the first stages of ME/CFS are given supportive counseling and opportunities to attend self-management courses rather than be sent straight to a psychologist.

We do not believe that general recommendations for psychological therapy are helpful. Generalising a recommendation for psychological therapy conveys the idea–unintended or otherwise—that ME/CFS is either psychological in origin or psychologically propagated. Even if this is unintended, reinforcing this idea maintains the stigma associated with ME/CFS.

A Healing Narrative

Finally, there is also the issue of iatrogenic harm to be considered. With any emerging condition, not every health practitioner is sympathetic to the patient experience. Serial rejection by health professionals both lowers patent’s self-esteem and creates mistrust in the health system. Many with ME/CFS go for years without diagnosis, support and treatment, and because of this there is increased risk of psychological trauma. This poses a problem in cases where patients who might benefit from psychological support are (understandably) resistant to it. Here patient advocacy groups may provide a bridging and mediatory role.

Two issues are critical in the ME/CFS narrative. First, it is damaging to patients when a distinction is not made between treatments that improve ME/CFS and those that help the patient live with ME/CFS. Second, it is damaging to patients to imply that psychological treatments will assist all patients with ME/CFS. This fuels existing prejudices that ME/CFS is substantially psychological in nature.

A healing narrative is needed to improve the integration of ME/CFS patients into the healthcare system. This begins with health professional bodies providing a balanced account of ME/CFS, one which considers the sociological impact of living with a condition with considerable stigma relating to it. This can be achieved while remaining faithful to the (limited) research evidence as to the pathophysiology of ME/CFS and the patient histories that we know a lot about.

Conclusion

The health profession should recognise that over-psychologising ME/CFS has detrimental consequences for the entire patient community. At the same time, because ME/CFS is generally a chronic condition, people with ME/CFS should be open to the benefits of receiving a tailored program from a psychologist or psychiatrist. However, unless there is an obvious co-morbid condition such as a severe mood disorder which requires treatment in its own right, this should be optional. A fresh narrative which provides a balanced perspective on ME/CFS needs to be developed so that people with ME/CFS are better integrated into the health system.

Paul Leverenz

Chairman

On behalf of ME/CFS Australia

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Background

For various reasons the ME/CFS movement in Australia has not mobilised itself well over the years. Our State Associations—like many organisations of their kind—struggle to fill committee member positions. It is difficult for State organisations to offer services and grow support when only two State Governments and one Territory Government have been prepared to fund paid professionals in their jurisdiction.

Initiated by the State ME/CFS Associations around the country in 1999, ME/CFS Australia was established to tackle the National issues including collective advocacy on behalf of all persons affected by ME/CFS. While a great idea, the National Association has lacked resources to do its job, both from a financial and a human perspective.

The National Association’s only regular income comes from State Association membership fees. At only $1 per member per annum as a base rate, this is insufficient funding to seed a new venture. Clearly the National Association needs alternate, regular revenue streams. At the same time, there has been a tension between the need to be a representative body and to find people with spare capacity to devote to the National effort. It has proved difficult to find State Association committee representatives with spare capacity to devote to National Association business beyond meeting attendance.

Why ME/CFS Australia has to get stronger

There are a number of reasons why ME/CFS Australia needs to get stronger.

1. We need only look at other chronic conditions such as MS, Arthritis, Diabetes and the like to see the benefits of a strong National Association. A vibrant and active National Body would provide many outcomes including:

• Effective use of National media to communicate our key messages;
• Better access to and inclusion in the healthcare system;
• Raise significant funds for pilot research and stimulate interest in the disease as a research area;
• High quality information, phone support and self-management courses easily accessible to every person with ME/CFS.

2. A National Association is likely to be the catalyst to improve struggling State Associations. In the foreseeable future, it is unlikely that State based Associations in the smaller States / Territories will be able to self-fund paid staff. Yet we need a strong local group active—at a minimum—in every State/Territory capital city. A stronger National Association is needed to assist these jurisdictions by securing Federal funding to deliver services in them. Volunteer and financial resources should follow service provision.

3. Our system of Government is becoming more centralised. The push is for National standards and uniform service delivery across the States and Territories. To achieve this more power is being placed centrally. Although State Governments deliver hospital services, for example, the Commonwealth is increasingly shaping how this is done. To influence at a National level we need a National Association, resourced and active.

4. Many of the key issues concerning people affected by ME/CFS are either directly within the purview of the Commonwealth Government or they are Federal-level issues. For example, the National Health and Medical Research Council which allocates funding to research and the Pharmaceutical Benefits Scheme which outlines which drugs receive Government subsidy,  require Federal level advocacy.  Medicare Australia (GP funding, chronic illness care plans) and Centrelink (pensions, carers allowances etc.)  are directly run by the Commonwealth Government. A National Association that influences the policy decisions of these organisation’s is essential.

5. The Commonwealth Government will only deal with National Associations. They outlay funds if it can be shown that they will benefit all Australians. Therefore, ME/CFS Australia is the organisation through which Federal funds can be accessed. It is the organisaiton which they will most listen to when developing policy.

There are, no doubt, many more reasons for a strong national body. We will briefly elaborate on the service delivery aspect of a National Association.

Service Delivery

In the last 20 years we have moved away from Government service provision to that provided by the non-for-profit sector. The classic example was the shutting down of the Commonwealth Employment Service and replacing it with the current system where—mostly not-for-profit—providers assist job seekers find work on behalf of the Government.

While Governments have a large role to play in our healthcare system, specialty services for people with various health conditions are often provided by consumer health groups. ME/CFS has many complex challenges associated with it, so it is likely that patient groups will need to step into the breach.

In order to bid for Government money to deliver services, we need to be much better resourced. As stated in a previous blog post, the ‘catch-22’ situation is that the Government will only fund National organisations with a strong organisation base. For us, that means that we really need to get to a point where ME/CFS Australia is receiving $30K – $50K in donations per annum. This modest amount would fund a staff member 2-3 days a week and improve our case with the Commonwealth Government.

In saying this, we cannot overstate the need for Government funding which is only part of the solution to improved services. While Government funding is invaluable, most charities get only a fraction of their total income from Government sources. A mobilised movement and financial supporter base must also be developed.

The Math

Turning the issue around, if we fail to mobilise then we will fail. There are over 50, 000 tax deductible charities in the country—one for just over every 400 Australians! These are all vying for the hearts and minds of benevolent Australians, for media attention and for Government funding.

We can guesstimate that there are approximately 300, 000 Australians alive who either have or have had ME/CFS[1]. If, on average, three people are directly affected  for every person with ME/CFS, we also estimate that approximately 5% of the population or one million people will have some ‘engagement’ with ME/CFS.

Doing these ‘back of the envelope’ sums, we conclude that there is a modest sized market of people out there with either a direct or indirect interest in ME/CFS. However, it is not massive and it is not financially well off. We will need everyone pulling in the same direction in order to be successful.

How can we mobilise?

A truly effective national movement is not based on centralised control—a multitude of puppets controlled by a master. It is a mass of people with a common understanding who can apply that to their circumstances, and influence those around them.

To quote a well-worn proverb: “A journey of a thousand miles begins with a single step”. The first perambulation forward for us is our website and blog. Through these we hope to establish a readership that learns together. We seek to develop a national consciousness of ME/CFS issues, shaped by reader input.

From this we hope to gain interest from professionals and lay people able to give their expertise and time to the National cause. We also hope to find sponsors and donors willing to back the work of a National Association. Ultimately, without this financial backing, our role will remain predominantly in the communication space.

Over the next year we will undertake a campaign focused on our next Federal election, raising awareness among MPs. We also will improve our website both in terms of functionality and content.

Conclusions

We trust that the reader has been convinced that there are a number of good reasons why a stronger National Association is required in Australia. It is essential if services and access to the healthcare system is to improve for people with ME/CFS. It is also likely to be a necessary catalyst to establishing effective State Associations in every jurisdiction.

Paul Leverenz

Chairman

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ME/CFS affects an estimated 100,000 Australians; those living with it can be as impaired as people with MS, AIDS, or those undergoing chemotherapy for cancer.

YET

• As few as 20% of people with ME/CFS are diagnosed correctly[1], with the average time until diagnosis being 7 years;
• People with ME/CFS continue to report difficulty finding a knowledgeable doctor;
• Government funded ME/CFS research is approximately $1 per patient (compared to $400 for each AIDS patient);
• Despite the evidence of over 4000 published studies showing biological abnormalities in people with ME/CFS, there is still significant community suspicion that people with ME/CFS are ‘malingerers’;
• Suicide is a significant issue in the ME/CFS community due to a sense of hopelessness in the patient community;
• Despite universal recognition that ‘CFS’ is a heterogeneous grouping, we do not have advice tailored to different groupings taking into account the duration of the condition, severity, and time to diagnosis; and,
• People with ME/CFS are still being prescribed inappropriate treatments that have the potential to do significant harm.

Given that ME/CFS costs the Australian economy up to $1 B p.a. in direct and indirect costs, there is significant incentive for the Commonwealth to reduce the cost to the community by improving treatment and research. Despite ME/CFS becoming prominent in the last 25 years, there are no Government-funded specialty programs treating people with ME/CFS (there are some fatigue clinics) and there is no Government-funded clinical or epidemiological research being conducted in Australia. People affected by ME/CFS often ask “Why is the system not supporting us?”

There are many reasons why services haven’t developed for people with ME/CFS in Australia.

1. There is a prejudice in our community against conditions which can’t be proven ‘in a test tube’. MS experienced this initially but now it is an accepted condition despite the fact that there is no definitive diagnostic test for it.

2. Researchers don’t bid for ME/CFS research because they don’t want to risk their credibility by studying something with a stigma associated with it.

3. The ‘system’ is geared to support low-risk gold-standard research which is not always the type of research required in emerging and complex fields. Patients should not have to fund all the higher risk and pilot research.

4. The ‘system’ under the previous Government was focused on the ‘big 8’ chronic diseases.

5. The Government is not engaging with a wide range of experts experienced in the research, treatment and management of ME/CFS.

6. The ‘system’ appears to assume (but on what basis?) that science cannot solve ME/CFS biologically. We infer this from the relative inactivity in terms of research and the position of the Australian Clinical guidelines which play down the biology of ME/CFS and focus on the behavioural management of ME/CFS.

7. Our health system is reactive to patient needs, requiring activist patient groups to bring recognition to conditions and to lobby for funds.

8. The ME/CFS Community has struggled to mobilise itself.

No doubt there are additional reasons; we’d love to hear your views on this.

What the Government Can Do

The Government—politicians, public servants including the entire health and community care sector—can begin by seeking out information on ME/CFS. This would include establishing a reference panel of researchers and clinicians experienced in dealing with people with ME/CFS. They could start to look at barriers to clinical care.

The Government can apply levels of evidence judiciously to this emerging condition. It is not good enough to ignore people just because we don’t understand everything about the condition. We must work on the balance of probabilities given what we know now. While research is still in its infancy, we must rely on patient case studies and testimony from clinicians.

Since the health system is largely reactive, the Government needs to find ways to stimulate interest in ME/CFS research. It needs to support health practitioner education, conferences and the dissemination of information. Critically, the Government needs to adopt provisional positions on ME/CFS which can be reviewed as the science improves. Ideally the Government would have a strategic plan to improve that science, participating in an international research effort.

The Role of ME/CFS Australia

It is the job of ME/CFS Australia to inform and influence decision makers. And while it is legitimate for us to point out issues and call people to account, it should also be our role to provide solutions. We are beginning to do that, but resource-constraints limit our ability to do that to the extent that we need to.

Conclusion

25 years have elapsed since ME/CFS came to recent historical prominence. People affected with ME/CFS have been let down by a reactive health system. The Government must stimulate interest in ME/CFS education and research. There is also a need for the ME/CFS community to improve its collective ‘performance’. This will be discussed in the next blog “Why ME/CFS Australia needs to be stronger”.

Paul Leverenz

Chairman

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ME/CFS Australia calls upon the Australian Government to develop a strategic plan to increase the amount of ME/CFS research in Australia. The Australian Government contributes only $1.17 per patient per annum for CFS research. ME/CFS needs to be made a research priority and ultimately a stimulus package needs to be put in place to support it. This will encourage promising academics into a field which is  exciting and will push the boundaries of science, benefiting all. Not only do we need more research but we need the right research so public money is not wasted. Some suggestions are offered.

The existing system is failing people with ME/CFS as some of the figures below indicate. CFS Research in Australia has been poorly resourced. The chart below shows the average funding provided by the National Health and Medical Research Council (NHMRC) toward various autoimmune and related conditions. Data supplied by the NHMRC shows that fatigue research is very poorly funded compared to other conditions across the financial years 2000/01 through to 2008/09. When we examined the individual grants awarded that were tagged with ‘fatigue’,  only about half of the money went to actual CFS research projects.  (Auto-immune issues Not Elsewhere Classified may contain research that is broadly relevant to a number of conditions).

We need to put this into context. The table below shows the prevalences of various diseases in Australia  including ME/CFS. (The information has been taken from consumer websites, and we’ll update as we obtain more information).  For ME/CFS we have used a round figure of 100, 000 Australians affected which equates to 0.43% of the population. This is a lower end estimate as many authorities state prevalence figures up to 0.7%.

We can see that ME/CFS is quite a prevalent condition in comparison to many well-known diseases, some of which receive significant Government funding.

If we do our sums there is only $1.17 of research funding per annum per ME/CFS patient! That’s a cup of (decent) coffee per three patients and certainly not enough caffeine to go around! Needless to say this is significantly less funding ‘pro-rata’ than most other conditions. By way of comparison, $400 p.a. is spent on each HIV patient. (HIV funding is approximately $6.7M p.a. averaged over the same time period).

The NHMRC awards funding based on merit. The low level of funding may be a reflection of small numbers of applications submitted or it may reflect a lack of confidence in the research field by NHMRC grant assessors. We do not have visibility of that information at this point in time and can’t comment on the performance of the NHMRC.

However, because ME/CFS is a pressing health concern and costs the economy up to $1Bn p.a., it is time for the Government to be proactive. The research community need to be given confidence that the Government supports ME/CFS research.

The Government needs to fund pilot research and, in some cases, accept a higher risk threshold given the immaturity of the research field. Without this science does not progress. It should not be up to private foundations and patients to take all the risks.

As representatives of the patient community, our desire is for biomarker research which will improve the sensitivity and objectivity of diagnosis. There are many promising biomarker candidates and an abundance of pilot research that could be replicated.

ME/CFS research needs to cover a broad range of areas. Biomedical research is important to learn more about the etiology and pathogenesis of the disease. The Commonwealth needs to fund clinical research and follow cohorts of patients over time, adding to our understanding of the Australian context. Social research is paramount to study the effects of this devastating disease on people’s lives, including the iatrogenic harm cause by delayed and wrong diagnosis. Psychological research is needed to find the best therapies able to reverse iatrogenic harm and assist patients cope with a disease which affects cognition, isolates patients and assaults their self-esteem.

Not only is it important that more research is conducted but it has to be right research. We commend the Canadian Clinical definition as being the one that best describes our members’ condition. It is by far the most stringent definition with five mandatory criteria and is most likely to lead to answers for the severely affected. We have concerns about how the ‘CFS’ research field has developed over the years. What we’d like to see happening is well articulated in this article by the ME Research UK group.

ME/CFS Australia asks the Government to assemble a thinktank of researchers familiar with the field and clinicians experienced in diagnosing and treating ME/CFS. Research priorities should be determined and research encouraged.

Finally, this is not just about ME/CFS. There are related conditions from which mutual learning can occur. As 70% of people with ME/CFS develop it post-virally, Q fever and Ross River fever research is important. Understanding the neurology of ME/CFS may have applications to atypical MS and Fibromyalgia, giving benefit to a much wider population.

In conclusion, there is a pressing need for Governments around the world to take a strategic approach to a serious health public health concern. Levels of ME/CFS research in Australia are critically low and need to be boosted. We call on the Government to develop a strategic plan to expand the ME/CFS research field and make ME/CFS research a priority area until the field has grown significantly.

Paul Leverenz

Chairman

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Go to the ME/CFS Australia home page.

A better world will include more robust and sensitive methods of ME/CFS diagnosis. Don’t be mistaken, ME/CFS can be diagnosed now and we reject claims that it is only a diagnosis by exclusion. However, we must acknowledge that there are clear and less clear-cases. A definitive biomarker or set of biomarkers for ME/CFS is needed–ones that improve the accuracy of diagnosis and provide objective measures of severity. This will narrow the ‘enevitable’ grey areas in diagnosis.  Thankfully, there already are biomarker candidates; some need further research for validation, for others the testing is not commonly available. (ME/CFS Australia encourages patients to donate to biomarker research projects through the Alison Hunter Memorial Foundation www.ahmf.org).

A better world is also one where people with ME/CFS are not discriminated against. Education is the key to breaking down ignorance and ultimately removing discrimination. It is not right that people with ME/CFS are doubted and forced to ‘prove’ they are ill in a manner that is more ‘guilty until proven innocent’ rather than the other way around. There are many conditions (e.g. Lupus, MS) for which there is not a single, definitive test which ‘proves’ the patient has it. Doctors make clinical judgments based on patient history all the time. Ignorance is the key difference in the case of ME/CFS.

Australia is a signatory to the recent UN Convention on the Rights of Persons with Disabilities. Under this convention it is acknowledged that disease is a cause of disability.  (Here is an overview of the convention).  We will talk a lot more about rights in future communications, but for this discussion we will focus on the following clauses under Article 15:

• No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment. In particular, no one shall be subjected without his or her free consent to medical or scientific experimentation.
• States Parties shall take all effective legislative, administrative, judicial or other measures to prevent persons with disabilities, on an equal basis with others, from being subjected to torture or cruel, inhuman or degrading treatment or punishment.

Discrimination finds its most ugly expression in the unnecessary, forceful removal of children with ME/CFS from their parents. It must not come down to the individual prejudice of (often) one psychiatrist. Patients must never be punished for being sick and/or not responding to treatment. It should not be assumed that highly distressed patients (who may have psychiatric symptoms) cannot have biomedical problems in their bodies that have lead to this situation.  (Dr Bell’s presentation to the CFSAC committee in the US, October 2009, is timely). While a distasteful topic, we long for the day when this will be tested in court and rogue practitioners held to account.

Similarly, we would argue that forcing people with ME/CFS  to undertake treatments which they do not wish to participate in is against the spirit of this convention. For example, those with moderate to severe disability should not be forced to undertake graded exercise therapy when they do not want to.  It is a pointless waste of their energy. (There may be some people in recovery for whom a sensible exercise management program helps). Of course this should not be forced on anyone. Coercion is experimentation.

Removing discrimination will lead to better and fairer access to the healthcare system. People with ME/CFS deserve a similar level of treatment received by others with conditions causing the same level of disability. Let’s not forget that the CDC’s CFS Program Director has said that “[People with CFS] are as impaired as people with MS, as people with AIDS, as people undergoing chemotherapy for cancer”. Families of severely ill patients need access to domiciliary care too.

Access is one thing, but we need a health care system that is better equipped. With Government intervention we believe that within seven years, every GP should be able to diagnose the ‘clear-cut’ cases of ME/CFS and be able to refer complex cases to ME/CFS specialists. We aim for a world where 1 in 100 Australian GPs are skilled in diagnosis & treatment of people with ME/CFS (approx 300 GPs Aust wide). Those in regional areas should have access to GP specialists via the internet. While this may take longer than seven years, it is still something we must push for.

A better equipped healthcare system will include hospitals that understand the needs of people with ME/CFS. This will include an understanding of tolerance to medications, environmental requirements and dietary needs.

A sympathetic and knowledgeable healthcare system will be based on a solid foundation.  This will require ME/CFS to be taught in specialist, medical, nursing and allied health professional curricula.

Further to this, we would like to see several multi-disciplinary clinics trialled around the country. Places where people with ME/CFS receive a wide variety of treatments aimed at improving ability and keeping people in the workforce wherever possible.

On the research front, the better world that we envisage would include a multi-million dollar CFS research program in Australia. This would be aimed at understanding the aetiology and pathophysiology of ME/CFS, as well as identifying suitable diagnostic test(s).  This would be on the back of a strategic plan overseen by a diverse group of health professionals and researchers who are familiar with the diagnosis and management of ME/CFS.  Such a program would include clinical, biomedical, sociological and psychological research.

Finally, there is the obvious. The best world is one without ME/CFS altogether. We all hope and pray for that day when medical science has discovered cure(s) which effectively neutralise ME/CFS. We must dream for this world and pursue it with determination, knowing that there may be many steps along the way. This is the ultimate and, like people with other conditions such as MS and Alzheimers, we should never accept that ME/CFS is irreversible and must keep pushing for more research.

Well, that’s just an entree into this discussion and we’d love to hear your thoughts on what has not been included. Also, please tell us how you feel you are discriminated against as a person with ME/CFS. We will take on board your comments and fill in the gaps in part 2 of this article.  Over to you…

Paul Leverenz

Chairman

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Go to the ME/CFS Australia home page.

(If you are new to this blog, please read the ‘About this Blog’ page which explains what its all about.)

By way of background, ME/CFS Australia has been incorporated for a number of years. There is a seat on the board for State Associations who comprise our core membership. We also collaborate with the Alison Hunter Memorial Foundation (www.ahmf.org) who receive research donations and award grants to worthwhile projects.

In its early days, ME/CFS Australia served as a means to bring together these organisations and share information. It has been able to be a ‘spokesperson’ on behalf of the Australia-wide patient community. While the board has always wanted to do more, a subsistence level of funding and human resources has never allowed for expansion. Do we want that to change?

We wish to share with you the fruits of our brainstorming together. In the last two years the board has met monthly (up from one to three times a year) including two face to face meetings. We have discussed strategy, tactics, many projects and spent a lot of time learning too. People don’t always realise that Advocacy organisations operate in a specialised and professional space. Beginning with dozens of ideas we have whittled them down.

We now have a road map for how to move forward and wish to test our ideas. For any expansion of ME/CFS Australia to be feasible, it will require a unified, shared effort across the whole ME/CFS community. To win your support we know that we have to communicate with you. Hence this Blog.

The most pressing imperative for ME/CFS Australia is to establish operations. We must do this to be eligible for ongoing Commonwealth Government funding. By operations we mean an office with paid staff or volunteer-equivalents with professional skills working mostly in business hours. We estimate that $30K p.a. must be raised (initially) through private and corporate philanthropy to make a modest beginning. Importantly we must do this in a way which does not canabalise operating funds from our State Associations or this will become self-defeating for the movement as a whole.

ME/CFS Australia cannot sign up individual members, but needs a supporter base. You can become a supporter by subscribing to this blog via email. (Eventually it will be incorporated into an upgraded website). Our collective effort is aimed at helping all people affected by ME/CFS, through initiatives in the National/International domains. Given that we are working for all people affected by ME/CFS it is important that we have a means to reach everyone. Rest assured that your views expressed here will be taken into consideration.

ME/CFS Australia has a complementary role with the State/Territory organizations. The latter provide services directly to people affected by ME/CFS while ME/CFS Australia engages in collective action to benefit people with ME/CFS as a grouping. For example, we will influence decision-makers to:

* improve the healthcare available to people with ME/CFS
* remove prejudice and inequities for the people with ME/CFS
* invest more research funds in ME/CFS and related conditions

But ME/CFS Australia doesn’t just want to do things for people with ME/CFS. We want to empower you to help yourself and to feel part of a collective effort.

That’s just a taste. Stay tuned for more information…

Paul Leverenz
Chairman, on behalf of the Board

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Go to the ME/CFS Australia home page.