"assessing the evidence"
wasn't sure if this should go under the PACE trial thread, but as she [Ellen Goudsmit] was involved in and critical of some of the evidence search methods at the last review I thought it relevant here as they [NICE] argued that there was plenty of evidence for CBT/GET even if PACE was removed:
http://journals.sagepub.com/doi/10.1177/1359105317707216
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Other studies found similar results (Sharpe et al., 2017)
Our response: This is a fair point, but it should be noted that almost all the trials which have reported positive outcomes adopted the same design, with limited measures to evaluate symptoms and without stratification of subgroups, for example, those with a post-infectious onset (Sharpe et al., 2017). Jason et al. (2007), who used a different design, failed to replicate the results obtained in the United Kingdom and the Netherlands (summarised in Bagnall et al., 2007, Table 1). There are also other factors, notably the selection of patients using broad-case definitions, which may explain the similar results reported in the United Kingdom and the Netherlands (Malouff et al., 2008).
The PACE trial assessed an approach preferred by support groups, that is, pacing (White et al., 2011; Bleijenberg and Knoop, 2011)
Our response: We are not persuaded that the trial assessed pacing as described by all except two patient groups (Bleijenberg and Knoop, 2011; White et al., 2011). This was pointed out in various articles by both Goudsmit and Jason who developed this strategy (Goudsmit et al., 2012; Jason et al., 2013). The PACE trial assessed a programme called APT which includes advice about activity management and reducing stress, and also encourages the use of the 70 per cent rule. Simply put, this rule allows people to do less than they are able to. In contrast, pacing as recommended by most support groups is based on the Envelope Theory which requires patients to match expended energy with perceived energy (Jason, 2017). Thus the claim that the PACE trial evaluated pacing based on the Energy Envelope Theory is factually incorrect (Chalder et al., 2015; White et al., 2011).
CBT is also available to people with a number of medical conditions including multiple sclerosis and cancer. Why should it not be offered to patients with ME/CFS? (Campling and Sharpe, 2006)
Our response: The protocols for these conditions do not aim to cure or deal with somatic symptoms such as diplopia or incontinence (Campling and Sharpe, 2006). They tend to address adjustment, anxiety, depression and the effects of distress.
They do not challenge the patients’ view that they are suffering from a disease. See Goudsmit’s (2001) factsheet written after the first time this argument was noted.
The protocols for ME/CFS which have been assessed in RCTs focus on chronic fatigue and rarely discuss symptoms such as dizziness, blurred vision and bladder disturbances which are common in ME (Goudsmit et al., 2009a). These and other symptoms are invariably attributed to misattribution, a lack of fitness and the effects of ‘worry’. For example, see articles by Powell (2005) and information on the King’s College website (various years). In the case of disequilibrium, the presumed cause (e.g. inactivity and the ‘mistaken’ belief that the consequences reflect pathology) may be applicable to a proportion of patients who report chronic fatigue, but in disorders such as ME/CFS, evidence of central nervous system deficits suggests that interventions other than CBT and GET may be more appropriate (e.g. Ash-Bernal et al., 1995; Shepherd and Chaudhuri, 2016)."
I appreciate that many will not agree with all that EG has to offer but she makes some very good points, particularly IMO with regards the plethora of other ME symptoms that make little or no appearance in most of the BPS research (particularly with regards to 'recovery').
The main outcomes list as it stands has a distinct DWP feel to it.
