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ME/CFS research funding needs boost

Wednesday 18 November 2009

ME/CFS Australia's BlogPaul Leverenz, Chairman of ME/CFS Australia, has written an article on ME/CFS Australia's Blog about the need for more research funding in Australia:

ME/CFS Research Funding Needs Boost

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).

Research spending

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).

Condition prevalences

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

This article – and more – is available at ME/CFS Australia's Blog where you can sign up to receive regular updates.



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