Government advisor calls for more biopsychosocial research into ‘ME/CFS’

tall UNSW building with UNSW in white lettering

by Sasha Nimmo

Researchers at the University of New South Wales (UNSW), including Prof Andrew Lloyd, published a review stating there is a “need for longitudinal studies integrating biopsychosocial approaches to inform early management and targeted rehabilitation strategies”. Prof Lloyd was on the government’s ME and CFS advisory committee and received the majority of government research funding over the last 20 years.

The review ‘The Invisible Burden of Chronic Fatigue in the Community: a Narrative Review‘ was published in Current Rheumatology Review, February 2019.

Concerningly, the UNSW researchers use the term ‘ME/CFS’ to describe a fatigue state, not the disease described by the Canadian Consensus Criteria. The paper states, “Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) sits at the extreme of the fatigue continuum”, reiterating the view of the current Australian chronic fatigue syndrome guidelines. This shows that biopsychosocial researchers are dangerously co-opting the language ‘ME/CFS’ to apply to any description of chronic fatigue, putting research at risk as they are not using clear or up-to-date criteria.

Lead author, Scott J Fatt, has published one paper on ‘fitspiration’ on social media and one on use of data. Before joining UNSW, Fatt was in Macquarie University’s department of psychology. Macquarie University’s psychology department came under fire last year for their study on hypochondria in chronic fatigue syndrome, fibromyalgia and multiple chemical sensitivity.

The review states, despite the economic burden, “ME/CFS has been, almost exclusively, the focus of empirical investigation into pathophysiology and treatment.” Pathophysiology is the ‘study of changes in the way the body works that result from disease’. Their claim is demonstrably untrue in Australia, where government-funded research into chronic fatigue syndrome and ME has focussed heavily on the psychological aspects.The review reinforces the view that people cannot be trusted to report their own symptoms accurately. “Much of the available evidence in the area is still reliant on self-report measures of symptoms. This is problematic, given the well-documented discrepancies between subjectively reported and objective performance measures in patient populations generally and in patients with ME/CFS in particular. For a more accurate understanding of chronic fatigue, there is a need for research in this area to move towards utilising more biological and behavioural assessments, in combination with self-report measures.”

It says that cardiac and autonomic problems are due to deconditioning. “In particular, as physical activity in patients with ME/CFS is often severely restricted, cardiovascular and autonomic disturbances may develop as a consequence of inactivity”.The review also says orthostatic intolerance is due to inactivity and can be fixed with with early intervention of graded exercise therapy and cognitive behavioural therapy (CBT).  “Symptoms of orthostatic intolerance have been replicated in healthy individuals who have also undergone dramatic reductions in physical activity. Such symptoms may evolve because of the severity and duration of the illness and act as a perpetuator of impairment, offering a window of opportunity for early intervention in patients with chronic fatigue conditions.”The authors acknowledge that CBT and GET have low success rates, however they still describe these therapies as “current best practice” for ME/CFS and recommend them as “more useful in the early rehabilitation of those with chronic fatigue, potentially reducing the progression to a more severe condition” rather than the other way around, as it has been demonstrated that those with ME who undertake graded exercise therapy are more likely to progress to severe.

The authors cite one of their own studies to infer that personality plays a role. “A pertinent risk factor for the development of persistent fatigue suggest that a dysregulation in neural stress-response pathways may be triggered by such an internal stressor. Existing vulnerabilities including genetic makeup, acquired/developmental sensitisation in stress-response systems, personality and psychosocial stressors are likely to interact with such a trigger to potentiate the risk of prolonged fatigue.”

The UNSW’s Dean of Medicine has been clear in the past that the university understands chronic fatigue syndrome (or ME/CFS as they now call it) to be a ‘subjective diagnosis of exclusion’ with ‘GET and CBT being widely acknowledged as best-practice interventions for CFS’. When presented with a petition calling for a halt to the roll-out of training medical professionals in cognitive behavioural therapy (CBT) and graded exercise therapy (GET) for CFS, the Dean said the people who are protesting harbour ‘resentment against the notion that CFS may have psychological causes’.

Prof Lloyd was recently on the government’s ME and CFS advisory committee which produced a draft report stating more research funding was needed. It also stated that 99% of people recover. The danger is that Prof Lloyd and his colleagues at UNSW will now be applying for that funding to conduct biopsychosocial research into Myalgic Encephalomyelitis and chronic fatigue syndrome, starving much-needed biomedical research of government funding.

The paper’s conclusion disagrees with the International Consensus Criteria (ICC) for Myalgic Encephalomyelitis. The ICC explains there is mostly a distinct acute onset with ‘symptoms that identify the distinctive character of ME begin to appear as a cluster’, however Fatt et all say it is all ‘chronic fatigue’ then some progress to ME/CFS. Fatt et al also refer to ‘years of disability’ rather than permanency.UNSW present their recommendation as the only option for future research. “It is only by adopting such longitudinal designs and a biopsychosocial approach to assessment that the capacity to unlock issues of vulnerability and risk will be maximised, allowing for the prediction of who will recover quickly from a period of fatigue and who will progress to ME/CFS and possibly years of disability. As very few evidence-based therapeutic options currently exist, insights gained from such study designs can help inform effective and targeted early intervention strategies to assist those with chronic fatigue before conversion to ME/CFS.”

This work was funded by the Mason Foundation.    

Frank Twisk has published a response to it, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, and Chronic Fatigue: Three Distinct Entities Requiring Complete Different Approaches.

4 thoughts on “Government advisor calls for more biopsychosocial research into ‘ME/CFS’

  1. At first I thought how depressing. But really, for us able-bodied people, this is another doable challenge. We can agitate and advocate louder on behalf of family and friends. The tide will turn eventually. Keep up the good work ME news. You and others give me hope. Penny.

  2. In research, what is needed is unbiased attitude, and this is in fact sadly lacking when it comes to ME/CFS. That is my polite response; I am tempted to use expletives but will refrain from doing so.

  3. I don’t know how to reply to this politely either, except to say it’s disappointing but not surprising that this university is still harping on about psychology being the major contributor, given who is involved. Never mind about the wealth of evidence building for ME’s biological basis; after all, there are reputations on the line! We can only hope they don’t get too much of the promised funding, and if they do we need to protest loudly!

  4. It should be labelled as the psychosocial approach as there is no “bio” as the BPS studies only use wholly subjective measurements and trials are open to bias. There is no objective “bio” measurements used in any psycho-social studies. These are often dropped midway as they are shown to be not proving the deconditioning theory, but disproving it. In the case of BPS PACE trial they even changed outcome measurements half way through so you could be sick enough to enter the trial *get worse* and then still meet criteria for recovery. This kind of flawed research just muddies the waters and should be rejected or the whole scientific method becomes redundant.

    There is no biomedical research to support the deconditioning model, in fact the biomedical research shows clearly that there’s is a distinct energy fault called PENE (post Exertional neuroimmune exhaustion). This can be physically tested for with a 2 day repeat Cardiopulmonary exercise test (CPET), metabolic testing and excessive lactate levels. Those biomedical studies show that exercise therapy often used in the defunct “deconditioning model” is in actual fact harmful to patients with PENE. PENE is not “fatigue” it’s not deconditioning. It’s physiologicaly different and has its own unique pathophysiology. The cardinal symptom of ME is not fatigue it’s PENE. Anyone still denying this in 2020 with the overwhelming biomedical scientific findings is living in la-la land. Several scientists are working on biomarkers as the CPET test itself is harmful to patients.

    The science has moved on. Why these psychosocial psuedoscientists are still clinging on to a defunct theory is beyond me. Enough money has been spent on this field, especially in the UK to show it’s a null route. The BPS research has done nothing to help patients, in fact it’s harmed thousands and has stunted biomedical research for nearly 3 decades. What would be helpful is investing research into biomarkers so treatments can be objectively tested.

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