Although not perfect, these new guidelines represent a shifting tide away from NICE CBT & GET ridiculousness. Read the full document here. (Note this was issued in July and updated in nov 2017 to remove peter smiths name)
‘The chronic disability leads to a sedentary lifestyle that may foster deconditioning of muscular, cardiovascular, and autonomic nervous systems. This provides the rationale for supervised, very low impact exercise if a suitable, well-tolerated programme can be individualised for each patient. However, exercise may be counterproductive in severe and/or bedridden CFS because the treatment may induce post-exertional malaise (PEM) and prolonged exercise-induced exacerbations. Mandated exercise programmes with predetermined goals cannot be endorsed because of their potential to harm patients whose primary problem is exercise-induced loss of function.’
‘Exercise may be beneficial for recovery of athletes, healthy individuals, cardiac patients, and others who may experience temporary immobility, but it is not clear whether patients with CFS respond in the same way’…
‘This highly generalised view and exercise prescription may not apply to the theories of metabolomics dysfunction and post-exertional malaise in CFS’… ‘What appears to be deconditioning may in fact represent the inability to generate adequate ATP for muscular work,and intolerance of exercise-induced acidosis as the diagnostic PEM epitomises’.
GET is recommended for mild fatigue only: ‘with mild fatigue: consider individualised exercise program’.
‘CBT may help in dealing with a new diagnosis of CFS, improve coping strategies, and assist with rehabilitation…
‘to take advantage of periods during the day where fatigue is felt the least…
‘However, the prospect that CBT can change the illness beliefs of a patient, and that graded activity can reverse or cure CFS, is not supported by post-intervention outcome data. Furthermore, in routine medical practice CBT has not yielded clinically significant long-term benefits in CFS.’
‘Non-adherence with prescribed exercise protocols may indicate that the protocol is too aggressive for the patient. Patients should be provided time to recover between each exercise session. Imposing strict adherence to a uniform exercise regimen will generally not be tolerated by patients with CFS. Other factors contributing to non-adherence include severe fatigue, pain, difficulties in travelling to the physician, and severity of PEM following visits to the physician’…
‘Family, financial, and other conflicts may interfere with the physician-patient relationship. Sleep disruption with reversal of day-night cycles may confound patient travel plans and appointments. Furthermore, concomitant problems such as IBS with uncontrolled explosive diarrhoea can be an embarrassment that keeps the patient housebound. Social withdrawal with depression should be addressed, and all such patients asked about suicidal ideation’…
‘Patients with severe CFS may be bed-ridden and require home visits and in-home therapy sessions because severe pain and discomfort will prevent them from travelling. Severe CFS represents about 5% to 10% of cases. It is not known if this group represents a separate disease or aetiology, or is the extreme end of a continuous distribution of CFS severity.’
‘The presence of inflammation in CFS pathology may contribute to inflammatory dysaffective disorders (IDD) that will require a reassessment of potential treatment options.’
– This is not discussed further and google pulls up little information. Theoretically, given our recent understanding that inflammation can be associated with depression, this could be saying that depression isn’t causative or comorbid but is in fact secondary to the disease process itself.
‘The focus of treatment should be orientated toward symptom management and functional improvement, and away from repeated, extensive diagnostic procedures, or ongoing referrals to additional specialists.’
– This is counterproductive for evidence gathering for disability.
The review recommends use of the Canadian consensus criteria (CCC) and dropping the oxford criteria and studies which were based on it.
‘It is inappropriate to use the 1991 Oxford criteria of fatigue as an alternative for CFS because the Oxford criteria are based on ‘mild fatigue’, do not require PEM, and allow inclusion of chronic idiopathic fatigue, depression, and other fatiguing conditions. Up to 30.5% of the population have chronic fatigue and would meet Oxford criteria for study inclusion. Studies that used the Oxford criteria are not representative of the more severe and restricted definitions of CFS that the CDC, Canadian Consensus, or SEID criteria define. Exercise and cognitive behavioural therapy studies that used the Oxford criteria for study inclusion are biased and misleading because people with true CFS are underrepresented, with excessive recruitment of people with chronic idiopathic fatigue and depression who are known to respond well to these modalities.’
‘Myalgic encephalomyelitis (ME) is more strictly defined than CFS. ME is defined by: disabling fatigue; post-exertional malaise; sleep, pain, cognitive and autonomic dysfunction; and chemical irritant sensitivity.’
Regarding ‘false illness beliefs’ (on which PACE trial based):
‘The biopsychosocial model of CFS and its treatment with CBT has been adopted by many governmental organisations with the aims of eliminating many presumed psychogenic and socially induced factors that maintain illness behaviours. The literature does not justify the biopsychosocial model of CFS when studies are limited to CFS patients with moderate to severe fatigue, and PEM in accordance with the Centers for Disease Control and Prevention (CDC) and Canadian Consensus Criteria.’
‘Chronic pelvic pain, vulvodynia, interstitial cystitis, IBS, and other functional somatic syndromes should be treated as significant components of the CFS panoply, with appropriate diagnosis and treatment.’
– Ridiculous that IBS would still be listed as ‘somatic’.
‘There is currently no evidence showing one drug regimen to be more effective than another. Choice of drug should be based on the side-effect profile of the drug and the patient’s initial response to treatment. Some patients have hypersensitivity to medication side effects.’
‘Metabolomics dysfunction and beneficial effects of rituximab provide new insights into the pathophysiological mechanisms of CFS. These studies of biological dysfunction suggest that CFS does not overlap with chronic idiopathic fatigue or depression.’
The review also includes some information about differential diagnoses which may present as ME/CFS, for example, Major depression: ‘Diagnosis is clinical but the affective dysfunction does not follow an infection, and is not typically associated with new onset of pain, migraine, irritable bowel, or autonomic dysfunction. It is generally improved by exercise instead of exhibiting post-exertional malaise and exhaustion.’
Note: The review at times seems to be presenting two contradictory views at once, presumably main peer-reviewer Peter White (involved with PACE) contributed the pro CBT & GET sentences which are not in alignment with the conclusions. ‘Disclosures: PDW does paid and voluntary work for the UK government and a reinsurance company’.