The Guardian opinion piece, by Naomi Chainey, 21 March 2017: Yet more research shows chronic fatigue syndrome is real. When will health services catch up?
Despite hopeful research, it will be years before chronic fatigue syndrome is taken seriously by GPs and healthcare services. Exercise is not the answer.
‘One wonders how many times an illness must be shown to exist before up to 250,000 chronically ill Australians will no longer be accused of maintaining a collective delusion.’
When the New York Times publishes a piece on the glaring flaws in a large study conducted on the effectiveness of recommended treatments for chronically ill people, saying claims of recovery are ‘overstated’ and ‘not justified by the data’, I can’t imagine that’s a good thing. However, as someone who has been ill with chronic fatigue syndrome (also called myalgic encephalomyelitis or ME/CFS) for over a decade, the article represents hope.
The authors, Julie Rehmeyer and public heath expert David Tuller, refer to the Pace trial, a publicly funded study conducted in the UK comparing the effectiveness and safety of four treatments for ME/CFS. The authors of the study were recommending two of the treatments, cognitive behavioural therapy and a program of gradually increased exercise, long before the trial commenced, on the assumption that patients with the debilitating condition were plagued with ‘unhelpful beliefs’ about the organic nature of their illness. If we can overcome those beliefs, the theory goes, we should be able to reverse our physical deconditioning and exercise our way back to health.
In the published results, the authors claimed a modest recovery rate of 22% with the favoured therapies (other therapies were found to be comparatively ineffective). However, when patient groups gained access to the data from the trial through freedom of information requests, it was eventually revealed that the definition of ‘recovered’ had been
altered partway through the trial to include people who were still relatively ill (some with physical function on par with class II congestive heart failure patients), and had this not been done, none of the recovery rates would have been statistically significant.
As it turns out, exercise and positive thinking are not a panacea. In fact, when surveyed, 74% of people with ME/CFS who have attempted the recommended exercise program report that their condition worsens, some losing significant function in the fallout.
There is now a wealth of research on the biology of ME/CFS, discrediting the idea that we are merely ‘deconditioned’, but the theory that our beliefs hold us back remains persistent, both within the health care system and the media.
For example, Queensland’s Griffith University recently released a groundbreaking study confirming that people with ME/CFS have faulty calcium receptors in their immune cells, and various media outlets claimed this meant that the debate over whether or not the illness was ‘all in our heads’ was finally over.
Never mind that the same claim was made back when studies on our metabolisms, our gut bacteria, excess molecules regulating inflammation, reduced white matter, unusual gene expression and lowered oxygen uptake were published, now our illness was real.
One wonders how many times an illness must be shown to exist before up to 250,000 chronically ill Australians (one in four of whom are too ill to leave their homes) will no longer be accused of maintaining a collective delusion.
While the research is very promising, realistically we are years, possibly decades, from the development of effective treatments for people with ME/CFS, and, in the interim, little has been done to alleviate the scepticism of the health professionals tasked with our welfare. The Pace trial remains the official touchstone for treatment recommendations and no specialist field has officially adopted the condition. Finding a doctor who is willing to take the illness seriously, and make appropriate recommendations to disability service
providers, remains extremely difficult, and continues to cause great distress and financial hardship for Australians with the condition and their carers.
