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Written by Cort
Day Two of the Australian Conference by Rosamund Vallings – Conference explicator extraordinaire :)
DAY 2
Day 2 was involved in general discussion with various panels looking at clinical matters, case definition, guidelines and research collaboration. Possible name change was also discussed. There was plenty of open discussion, and being a small group meant an interactive forum with everyone participating.
Some of the salient points:
Name change: most people acknowledged that patients do not find the name CFS describes the severity of the illness – tends to trivialise it. It was agreed that the name ME was more appropriate in many ways, although still not entirely accurate for this illness. There was some discussion as to whether gut symptoms and possible auto-immune activity could be incorporated.
Case Definition: The Fukuda definition is still useful for research and one must bear in mind that many previous studies have used this defintion so it should not be entirely abandoned, although all agreed that the Canadian consensus defintion is more suitable for clinical diagnosis, and should generally be adopted. It is hoped that this definition will be adopted internationally and renamed accordingly. All agreed that the CDC empirical definition should not be used. The issue brought up earlier at this symposium of “sickness behaviour” as terminology was thought to be a backward step, and would be unpopular with patients, although Hugh Perry explained his reasoning very clearly.
Diagnosis: The importance of biomarkers was reiterated. These need to be user friendly and readily available. There should be opportunity to sub-group according to type of onset, symptoms and gene expression. Clinicians new to this illness need to be aware of the range of longterm diagnoses that may emerge in those with CFS, so that regular ongoing surveillance is important. Uniform assessment tools should be encouraged, although it is acknowledged that not all types of testing will be available everywhere.
Management/guidelines: Guidelines need to be unified, and there should be collaboration among those working on guidelines. Nancy Klimas stressed that financial assistance should be available for a face to face meeting among experts to work on this.
There was some discussion about the importance of off-label prescribing, as many clinicians feel uncomfortable if they do not stick to evidence based medicine. A recommendation should go out in support of being able to use medication in this illness, where there is some useful research backup, even if not formally trialled, so that practitioners do not need to fear litigation. A longitudinal “n of one” trial of a treatment approach on one patient should be deemed useful, and clinicians should be encouraged to do this and write up their results.
Clinical overview: 5 clinicians presented their views on management, and there was much discussion contributed from those on the floor also. Mieke van Driel (Queensland, Australia) presented an overview of drugs used in CFS. Few trials have been done, and those that have showed little benefit. She recommended that we should let patients guide the research agenda by teaching us what works for them.
Don Lewis (Melbourne, Australia) discussed the importance of food intolerances, and emphasised that although gut symptoms maybe prominent, they may not always occur. A strong family history of intolerances is relevant. He firmly believes that intestinal dysbiosis occurs in almost all his patients and the hydrogen sulphide test was positive in 85% of patients. IgG antibodies were found to many different foods. He now proposes formal laboratory based clinical trials.
Bill Cassimatis (Queensland,Australia) has a number of CFS patients in his general practice and he outlined his general approach. He mentioned that a number of women with this illness seemed to be worse cyclically, confirming that in some women, hormones are involved. This was discussed further by Rosamund Vallings (Auckland,NZ) who uses oestrgen and progesterone often in women with CFS with cyclical or post menopausal symptoms. Nicole Phillips (Melbourne, Australia) who is a psychiatrist pointed out that some women can become depressed on Depo-Provera.
Norman Hohl (Southport, Australia) Is relatively new to dealing with this illness, but as a travel medicine consultant and qualifications in infectious diseases, he has a strong interest in preventative strategies.
Research directions: All agreed that this symposium will lead to collaboration internationally. International concurrent trials are needed, and more funding is essential. Larger worldwide studies are likely to increase funding availability. Collection of observational data can be of value. The idea of establishing a CFS registry was considered a valuable approach although this could be often difficult and time consuming for medical practitioners. Using internet self report will not necessarily generate patients fitting diagnostic criteria. Diagnosis needs to be made with face to face encounter by physicians familiar with the illness. More medical education is thus a very important issue to be addressed.
Immediate plan: A formal press statement was produced for distribution after the symposium outlining the salient points raised. A list of future directions was also formulated. Some further e-mail discussion and collaboration between the scientists and clinicians is envisaged, and this was a very positive outcome from this symposium. Many of these people were new to CFS and had never met before, and it seems a whole new set of directions for future research will ensue.
Those who had presented papers were encouraged to make the full paper available for the website which will be set up and meanwhile the abstracts will be available.
Christine Hunter and her AHMF team were formally thanked, together with the team from Bond University. Without all the dedication and hard work by all of these people, this symposium would never have been possible, and everyone agreed it was an enormous success. The event had been ably chaired by Prof Ken Donald and Prof Mel Miller.
I would like to thank the Alison Hunter Memorial Foundation and ANZMES for enabling me to attend.
ROSAMUND VALLINGS