National Science Week Presentation: Latest Research in CFS
Sunday, 20th August, 10.30am - 12.30pm. Nicholls Theatre, National Convention Centre, Constitution Ave, Canberra.
Speakers (as pictured left to right):
Professor
Andrew Lloyd, University of NSW power
point presentation (4.5 Mb)
* The answer to Chronic Fatigue Syndrome is not an exotic virus or abnormal
immunity; more likely, it lies in the brain. Professor Lloyd will discuss the
findings of the Dubbo Infection Outcomes Study.
Paul Leverenz, Vice-President, ACT ME/CFS Society power
point presentation (300 Kb)
* Hear a personal account of the trials of living with CFS from a representative
of the ACT ME/CFS Society. You can also learn about the support the society
offers.
Professor
Suresh Mahalingam, University of Canberra power
point presentation (2.5 Mb)
* Assoc Professor Mahalingam will discuss how Ross River virus research may
provide insights into post-infective fatigue syndrome. New research using an
animal model of the disease may lead to greater understanding of chronic fatigue
syndrome.
For more information including contact details see:
Paul Leverenz presented a patient’s perspective on CFS. CFS is a serious and disabling illness that affects 0.2-0.7% of the population. It (conservatively) costs the Australian community $500m p.a. Patients often encounter ignorance and even prejudice from medical practitioners, friends and families. The legitimacy of CFS is not helped by the lack of a diagnostic test for the condition. However, there are many other accepted medical conditions which are also not fully understood, so this is not a legitimate reason for dismissing it. In fact, it is unacceptable given what is known about the illness and the patient histories that have been documented. People with CFS often find that the invisible nature of the illness can lead to scepticism and misunderstanding. Friends often see us when we are at our best, but they don’t see the before and after effects of a few hours out socialising. Many of us with CFS are frustrated as we are highly motivated, yet unable to do and achieve the things we want to.
Turning to CFS research, Prof Andrew Lloyd outlined his current thinking, following a study of post-infective fatigue based Dubbo. He recounted some research history, explaining that early CFS research (including his own studies published in Brain in 1991) has already found that fatigue in CFS is not due to muscle dysfunction. He indicated that further research over the past decade has found that CFS is not a psychiatric illness, a retroviral illness, a sleep disorder, an autoimmune disorder or a metabolic disorder (amongst other possibilities). But he said, CFS is certainly prevalent and disabling, and we are still searching for understanding of the biological basis of the disorder.
In the Dubbo Infection Outcomes Study (DIOS), 250 patients with glandular fever, Ross River fever or Q fever were evaluated shortly after onset of infection, and then again at regular intervals over 12 months or more thereafter. About 10% of the subjects were still ill with disabling symptoms marked by fatigue after 6 months and when carefully assessed by a physician and psychiatrist these individuals met diagnostic criteria for CFS. Having established that the outcomes from these infections provides a "model" for the onset of CFS, the main aim of the study is to identify any significant differences between those who got over their infections quickly and those who developed post-infective fatigue syndrome. The researchers tested to find if there was an aberrant immune response, persistence of pathogen (microbes still in the person’s body), or chronic cytokine production that would explain why some people were still feeling sick when others had recovered. No evidence for any of these possibilities was found.
Prof Lloyd now believes that the CFS illness is brain-mediated. He noted that the small number of published functional MRIs (highly specialised brain scans) of patients with CFS brains suggested that regional activation of the brain during activities that excacerbate symptoms showed differences from healthy subjects. He noted that pain conditions such as fibromyalgia are believed to be the result of abnormal brain recognition of physical stimuli (i.e., the pain threshold in the brain is set too low), and hypothesised that it is highly likely that comparable brain mechanisms exist in CFS. The suggested that a person’s threshold for feeling ‘tired or not tired’ is out of balance. (He commented that it is likely there is an overlap between CFS and fibromyalgia, and described them as essentially synonymous disorders differing only in prevalence and severity of particular symptoms, such as pain).
In the question and answer session, Prof Lloyd also addressed the issue of whether depression is involved in CFS. He said there are now ‘ten to fifteen studies’ showing that CFS cannot simply be explained by anxiety or depressive disorders, although symptoms of this type are common. The DIOS study also evaluated this and concluded that psychiatric factors do not play a role in post-infective fatigue syndrome. (see British Medical Journal.) He commented, ‘My own impression is that the longer patients are unwell, the more likely they are to have psychiatric symptoms – understandably, as it’s a rotten [iillness].’
Associate Professor Suresh Mahalingam, of the University of Canberra, presented a 'mouse model' of viral infection which he believes will help us understand post-viral infection fatigue. He has infected laboratory mice with Ross River virus. The mice display evidence of similar symptoms to humans infected with RRV, and therefore can be used as a research model for human infection. After infection, some of the mice are killed at different time intervals so their corpses can be studied for evidence of the progress of the disease. Autopsies show the virus is first found in their bones, then spreads to the muscle and, later, to the synovial area (the joints). Even if the laboratory mice are not killed and do recover, they never weigh as much as normal, non-infected mice. The damage caused to muscles and bones may explain some of the symptoms experienced in post-viral syndromes.
Prof Mahalingam’s study found that the antigen to the virus persists in infected mice post-recovery, and can be detected. There is potentially a different hypothesis here. Should post-infective viral activity (and the body’s response to it) be significant, then answers also lie in the immune system. Interestingly, the DIOS study did not find anything significant along these lines.
This excellent seminar highlighted the unknowns surrounding this condition. Why do some people develop CFS and not others? Prof Lloyd’s theory that the answer is to be found in the brain is promising. Differences in brain dysfunction could account for the differing severity of symptoms in patients. Those who do develop post-infective (and other forms of) chronic fatigue may also have some sort of genetic susceptibility, and environmental factors my also play a role. Prof Lloyd mentioned that the results of gene expression studies are awaited to clarify this point. Others believe that immune system dysfunction may be at the heart of the matter. Worldwide, investigations will continue to test these hypotheses and more. Whatever the cause, more research needs to be done so that we can understand this illness which devastates too many lives and is so costly to our community.
Paul Leverenz & Moira Smith
ACT ME/CFS Society
This summary is not to be reproduced without permission of the ACT ME/CFS Society.
Order a DVD of the seminar [details to follow]
1. question time
2. crowd
3. Assoc Professor Mahalingam presenting
4. Paul Leverenz, Vice-President ACT ME/CFS Society presenting
5. ACT ME/CFS Society President, Mary Campbell
Volunteers are essential to undertake events like The National Science Week Presentation: latest research on CFS, and to keep the Society going.
The ME/CFS Society is a member of SHOUT (Self Help Organisations United Together). We can be contacted at the SHOUT Office located at the Pearce Community Centre, Collett Pl (opposite Pearce shops on Hodgson Crescent). The office is open 9am to 5pm Monday to Friday. If you intend to come in around lunch time, please ring first so the staff can be sure to be there. The phone number is 6290 1984, fax 6290 4475.
Our postal address is:
ACT ME/CFS Society,
c/o SHOUT,
PO Box 717,
Mawson ACT 2607.
Email: admin@mecfscanberra.org.au.
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