The PACE investigators’ citation of a patient survey might mislead readers into thinking that the experience of people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) supports PACE findings. In fact, patient survey evidence directly contradicts the results of the PACE trial. A review of survey data published between 2001 and 2015 reveals that for most patients, graded exercise therapy leads to worsening of symptoms, cognitive behavioural therapy leads to no change in symptoms, and pacing leads to improvement. The experience of people with ME/CFS as reflected in surveys is a rich source of information, made more compelling by the consistency of results. Consequently, patient survey evidence can be used to inform practice, research and guidelines. Misrepresentation of patient experience must be vigorously challenged, to ensure that patients and health professionals make decisions about therapies based on accurate information.

In ‘Response to the editorial by Dr Geraghty’ (White et al., 2017), the authors refer to a 2011 patient survey by Action for ME (2011a). They cite the survey as evidence that patients ‘want treatments that help them to improve’, including graded exercise therapy (GET) and cognitive behavioural therapy (CBT), and to refute Geraghty’s suggestion that ‘Their actions have arguably caused distress to patients’ (White et al., 2017: point 2; Geraghty, 2016: 6). White et al.’s citation of the Action for ME (2011a) survey could suggest to readers that (a) patients want GET and CBT, (b) patients find GET and CBT to be effective treatments, and thus, (c) patient survey findings support PACE findings. This is not, however, what Action for ME (2011a) or other patient surveys show.

Patients support other therapies over GET and CBT Action for ME (2011a, 2011b, 2011c) warned patients about widespread cuts to existing and future National Health Service (NHS) services for people with ME and asked patients which of six treatments/therapies they would like to be available on the NHS, regardless of whether they had experienced the therapies or not. Treatments deemed ineffective by the PACE trial (White et al., 2011), such as pacing (in the form of Adaptive Pacing Therapy, see further below) and Standard Medical Care, had markedly higher patient approval ratings for availability on the NHS than treatments deemed effective by PACE, namely, GET and CBT. GET was rated the lowest of all six therapies. 90–94 per cent of patients responded ‘yes’ to pacing, medications and fatigue/condition management being available on the NHS, compared to just 48 per cent responding ‘yes’ for GET and 66 per cent for CBT (Action for ME, 2011a: 5; Table 2). This is not the patient stamp of approval for PACE-approved GET and CBT that White et al.’s reference to the Action for ME (2011a) survey might suggest to readers. The survey supports the truism that patients ‘want treatments’, but did not assess which therapies ‘help[ed] them to improve’ (White et al., 2017: point 2) and demonstrates clearly that patients show considerably less support for GET and CBT’s availability on the NHS than for other mainstream approaches, including pacing and medications. A larger patient survey addressed the same topic; The ME Association’s (2010) survey asked respondents which of six therapies they felt were ‘helpful and acceptable’ and thus would recommend ‘for widespread use within the NHS’ (The ME Association, 2010: 25). A total of 3099 patients responded to that question, compared to 977 total respondents to Action for ME (2011a). The results rank pacing first of the six therapies, CBT second last and GET last. 82 per cent of respondents wanted pacing to be used in the NHS, compared to 28 per cent who wanted CBT and 24 per cent who wanted GET. Thus, the same pattern was found in both Action for ME (2011a) and The ME Association (2010): pacing is consistently ranked as the most-wanted NHS therapy by patients and GET is consistently ranked as the least-wanted NHS therapy. In summary, patient survey evidence cannot be construed to show widespread support for GET and CBT relative to other therapies, since it consistently ranks them lower.

Patients find GET and CBT ineffective A wide variety of management approaches have been explored in surveys, some of which do not fit easily into the categories of ‘therapies’ or ‘treatments’. For example, pacing is generally not considered a treatment for ME/CFS (Goudsmit et al., 2012: 1141), rather a compensatory self-management strategy (see further below). For simplicity, however, in this article, the term ‘therapy’ will be used to refer to any management approach/strategy/technique/therapy/treatment explored in surveys. The terms ‘effective’ and ‘efficacy’ will be used when patients report that a therapy improved or helped their symptoms. The ME Association surveys (2010, 2015) used the term ‘improve’, while Action for ME surveys (2008, 2014) used the term ‘helpful’. Similarly, ‘harmful’ and ‘harm’ will be used when patients report that a therapy led to worsening of their symptoms. Both ME Association and Action for ME surveys used the term ‘worse’. Worsening of symptoms for a considerable proportion of patients will be interpreted as reflecting negatively on the ‘safety’ of a therapy. Although the survey cited by White et al. (Action for ME, 2011a) did not address efficacy or safety of therapies, regular large patient surveys are conducted, asking patients who have used various therapies whether their symptoms improved, stayed the same or got worse, such as Action for ME (2014; n = 2081), The ME Association (2010; n = 4217) and Action for ME and Association of Young People with ME (2008; n = 2763, henceforth referred to as Action for ME, 2008). These surveys are a valuable source of feedback from patients about the efficacy and safety of therapies that they have experienced, in larger numbers than those that can be feasibly enrolled in randomised trials. When therapies are ranked in order of the percentage of patients who reported that their symptoms improved, GET ranks low, meaning that it is consistently identified as being one of the least effective therapies for ME/CFS. In three large surveys, GET ranked 19th of 20 therapies, 24th of 25 and joint last of 15 (Action for ME, 2014: 19; The ME Association, 2010: 9; Action for ME, 2008: 13, respectively). Most or all other therapies were thus more effective than GET in improving symptoms. Therapies ranking higher than GET for effectiveness include pacing, medication, meditation, dietary changes, reflexology, acupuncture and homoeopathy (Action for ME, 2014: 19). In the same surveys, CBT ranked joint 15th of 20, 22nd of 25, and 13th of 15, making CBT one of the least effective therapies. Pacing, on the other hand, which the PACE trial deemed ineffective, ranked 2nd of 20, 1st of 25 and 2nd of 15 in the same surveys. Only rest was more helpful. In the largest of the three surveys, just 22 per cent reported improvement with GET and 26 per cent reported improvement with CBT, while 71 per cent reported improvement with pacing (The ME Association, 2010: 9). In summary, patient survey evidence consistently finds that GET and CBT are among the least effective therapies for ME/CFS, while pacing is effective, in direct contrast to PACE trial claims.

Discussion The stark mismatch between patients’ experience of GET/CBT/pacing as evidenced in patient surveys, and PACE trial investigators’ claims regarding safety and efficacy of GET/CBT/APT, is at the heart of PACE-gate. White et al. (2017: 4) conclude their response by reiterating their claim that PACE ‘provide[s] patients, healthcare professionals, and commissioners with the best evidence that both CBT and GET are safe and effective treatments’ and as such are ‘good news for patients who, in our experience, just want to get better’. However, patient survey data provide compellingly consistent evidence, from larger samples than PACE examined, that for most patients, GET results in worsening of symptoms, CBT is ineffective and as such, these two therapies are unhelpful for patients who want to get better. Additionally, pacing emerges as consistently helping patients to improve. Patient surveys thus contradict the PACE investigators’ claim that ‘CBT and GET can safely be added to [Standard Medical Care] to moderately improve outcomes for chronic fatigue syndrome, but [Adaptive Pacing Therapy] is not an effective addition’ (White et al., 2017, 2011). Instead of supporting PACE findings, patient surveys are in line with critical reanalyses of the recently released subset of PACE trial data (Matthees et al., 2016; Vink, 2017; Wilshire et al., 2016). Patient experience in the form of patient survey data is a rich source of information regarding the safety and effectiveness of treatments and therapies and must inform practice, research and guidelines. Readers who wish to judge whether PACE trial authors’ ‘actions have arguably caused distress to patients’, as Geraghty (2016: 6) argued, and PACE trial authors rejected (White et al., 2017: point 2), or who wish to assess whether GET and CBT are safe or effective, would do well to examine patient survey data thoroughly. The ME Association’s (2015) extensive report of patient experiences of GET, CBT and pacing, comprising both quantitative and qualitative data, is an excellent starting point and should be required reading for any clinician considering prescribing GET or CBT to patients with ME/CFS. In spite of White et al.’s (2017) misleading citation of Action for ME (2011a), patient survey findings cannot legitimately be cited as lending support to PACE findings, since they show the opposite. Misrepresentation of patient experience must be vigorously challenged to ensure that therapies experienced by most patients as causing worsening or no change in symptoms, such as GET and CBT, are not promoted as something that patients want or have found effective. While biomedical research advances are beginning to elucidate pathophysiology and will hopefully lead to effective treatments, in the meantime that treatment gap must not be filled by unhelpful therapies that worsen illness and cost money. Sometimes, nothing is better than something. Most importantly, when patients say ‘This is harming us’, health professionals must listen.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.