Thanks to all those involved in ME/CFS advocacy in Australia. I wrote this brief overview of my thoughts on the report:
The Bad
There were some passages in the report that bothered me. It notes for example that fatigue syndrome was listed as a neurological and psychiatric condition in the ICD-10. I thought this was once clarified by questions of the UK government to the WHO, that ME and CFS are only listed once in the ICD-10, and that is under code G93.3. The Neurasthenia/ fatigue syndrome was mostly there because this diagnosis was made, until recently, in some Asian countries. At least that's how I understand it.
The report overestimates the recovery rates by relying on Australian data. I'm not sure how reliable or relevant the data from the Australian Burden of Disease and Injury Study (ABDS) is. It says that
"Median symptom duration ranges from 99% recovery after two years in post-infective fatigue syndrome to cases fluctuating at around 50-80% of their previous healthy state." Clearly, this is something else than ME/CFS. The study also focused on the recent prognosis study by Kathe Rowe (a member of the committee) which said that 68% of adolescents with ME/CFS reported full recovery after 10 years.
I think her data showed that 68% did have some remarkable improvements and were able to function again, but that they probably continued to have symptoms and disability higher than healthy controls. In the study by Bell et al. 37.1% considered themselves resolved of illness at follow-up while 42.9% considered themselves well but not resolved.
The report discusses the concerns raised about GET and the PACE-trial but in the end it writes:
"The Committee noted that GET should not be offered as a cure for ME/CFS but that it might have a role in a patient’s overall management strategy, helping with any secondary anxiety, de-conditioning and stress." I have no idea why they would say that. The Cochrane review indicated that GET doesn't improve anxiety, at the end of treatment nor at follow-up. And the objective data show that it doesn't help much with deconditioning either. I would argue that GET causes patients anxiety and stress if they are pushed by medical professionals to follow GET despite their concerns that it might worsen their condition. And if you want to avoid deconditioning there are other options such as pacing. I wonder if the presence of Lloyd and Broadbent who have recently studied and promoted the use of GET might have influenced these statements in the report.
In my opinion, they should have been excluded from developing recommendations on the matter relating to their professional conflict of interest.
The Good
The bad issues, however, seem less important as the committee was mostly established to advise NHMRC’s CEO on current needs for research on ME/CFS and what needs to be done in regard to diagnosis and treatment. In that regard, the report makes a lot of good recommendations.
For one, the report acknowledges the problems with the 2002 guidelines and says that new guidelines should be written. it reads:
"The Committee advises updating or developing new Australian ME/CFS clinical practice guidelines as well as developing General Practitioner educational material and patient engagement strategies." Of course, we don't know what will come out of that but given how problematic the 2002 guidelines are, this certainly seems like a good thing.
The report also writes that ME/CFS patients face difficulties in getting access to disability payments and support. Although outside it's scope it advises the responsible government agency, the National Disability Insurance Scheme (NDIS) to do something about this. The report says that NDIS should recognize ME/CFS as a serious debilitating condition, list it under neurological conditions and that "assessment guidelines" be developed in collaboration with clinicians with expertise in the management of ME/CFS and the ME/CFS community. It's always easy to say what others should do, but I think it's good that this is mentioned in the report. Australian ME/CFS advocates can now use this in requesting action from NDIS and other agencies.
The report points out the problems with the most commonly used case definition in ME/CFS research: The Fukuda criteria. The report writes:
"these criteria have been proposed to be overly broad in defining symptoms. This may lead to further lack of consistency, heterogeneity of patient cohorts and the potential for inclusion of patients who do not have ME/CFS, as these criteria do not have PEM as a mandatory symptom." The report advises using more recent diagnostic criteria such as the Canadian criteria or International Consensus Criteria.
The report recommends studying the burden of disease and the economic impact of ME/CFS. I'm happy to hear that according to Simone, applications have already been received for this. The report also calls for international collaboration and an Australian ME/CFS collaborative research consortium so that researchers share data and resources more easily.
The most important thing, however, in my view, is that the report advises a "targeted call for research (TCR) on ME/CFS pathophysiology". As I understand it a TCR is much like an RFA in the US: it puts money aside for a particular societal need that deserves more research. As the report explains, a TCR can
"stimulate the Australian ME/CFS research field by bringing new, emerging, early and mid-career researchers into the field." The report could have been full of nice words of how more research is needed, but without a recommendation for a realistic mechanism to stimulate ME/CFS research, it would have been toothless. So it's important that a TCR is recommended. If I'm correct, an amount of 3 million dollars has already been promised for ME/CFS research by the Minister of Health Gregory Hunt. That's a good example for other countries as it shows that it's possible to set aside funding to stimulate ME/CFS research. You don't have to wait until researchers decide they want to study ME/CFS.
So all in all, it looks like this is a good report and that positive development will come out of it if its recommendations are followed up on. Many thanks to all the efforts from Australian ME/CFS advocates for making this possible!
Perhaps we knew this was coming? but still, lovely to see it written so clearly. Still a matter of finding funding for the guidance development.