Talk:Myalgic encephalomyelitis/chronic fatigue syndrome

Exercise again

We had a RfC about this wording:

"Evidence suggests that cognitive behavioral therapy and a gradual increase in activity suited to individual capacity can be beneficial in some cases"

This is not specifically about GET but about exercise generally.

The AHRQ in 2016 says "The results are consistent across trials with improvement in function, fatigue, and global improvement and provided moderate strength of evidence for improved function (4 trials, n=607) and global improvement (3 trials, n=539), low strength of evidence for reduced fatigue (4 trials, n=607) and decreased work impairment (1 trial, n=480), and insufficient evidence for improved quality of life (no trials) (Table 7). By excluding the three trials using the Oxford (Sharpe, 1991) case definition for inclusion, there would be insufficient evidence of the effectiveness of GET on any outcome (1 trial, n=49)."

Thus it also supports the prior wording. GET in 2016 after excluding those using the Oxford definition, had only been studied in one trial involving 49 people thus it is not at all surprising limited conclusions could be drawn. Doc James (talk · contribs · email) 08:38, 14 June 2018 (UTC)

Doc James, when you say "GET in 2016 after excluding those using the Oxford definition, had only been studied in one trial involving 49 people thus it is not at all surprising limited conclusions could be drawn" that is in accordance with the position of the AHRQ, i.e. there is insufficient evidence for GET! This is precisely the point, and when it is made by a US Federal Agency it ought to be included in any Wikipedia article which has NPOV as a fundamental principle of editorial policy. I find it bizarre that you would want to suppress the AHRQ report. NPOV: "which means representing fairly, proportionately, and, as far as possible, without editorial bias, all of the significant views that have been published by reliable sources on a topic." https://en.wikipedia.org/wiki/Wikipedia:Neutral_point_of_view. Regarding using the term graded exercise therapy, that is what is being referred to in the references cited in support of its effectiveness: "Trials of rintatolimod, counseling therapies, and graded exercise therapy suggest benefit for some patients meeting case definitions for CFS..." http://annals.org/aim/article-abstract/2607809/cytokine-inhibition-patients-chronic-fatigue-syndrome-randomized-trial; "Most studies asked participants to exercise at home, between three and five times per week, with a target duration of 5 to 15 minutes per session using different means of incrementation." "Comparator interventions ... Adaptive Pacing Therapy" http://cochranelibrary-wiley.com/doi/10.1002/14651858.CD003200.pub7/full. Breachdyke (talk) 10:53, 15 June 2018 (UTC)

@Doc James: (courtesy ping). Kleuske (talk) 10:59, 15 June 2018 (UTC)

WP:MEDRS? Kleuske (talk) 11:00, 15 June 2018 (UTC)

Sure by it says "Four trials evaluated the effectiveness of GET compared with a control group (n=656) (Table 6, Figures 3 and 4). Of these, three used the Oxford (Sharpe, 1991) case definition (n=607)12, 30, 41 while one small trial used the CDC (Fukuda, 1994) case definition (n=49).42 The results are consistent across trials with improvement in function, fatigue, and global improvement and provided moderate strength of evidence for improved function (4 trials, n=607) and global improvement (3 trials, n=539), low strength of evidence for reduced fatigue (4 trials, n=607) and decreased work impairment (1 trial, n=480), and insufficient evidence for improved quality of life (no trials) (Table 7)." Why not highlight that bit? Doc James (talk · contribs · email) 19:39, 15 June 2018 (UTC)

I've not highlighted it because the AHRQ conclusions are premised on a rejection of the Oxford criteria (as also the NIH), which I make clear in the sentence I've added to the article. If you want to highlight here or elsewhere on Wikipedia, evidence for CBT and GET efficacy which utilises the Oxford criteria, you're free to do so. As it is, to edit out the citation of the AHRQ conclusion is editorially unjustified by NPOV, the AHRQ's position being significant and cited from a reliable source. Breachdyke (talk) 22:13, 16 June 2018 (UTC)

@Breachdyke (talk), detailing why there are conficting statements about GET is too confusing to accomplish properly in the lead. The GET exceptions you put in the lead are detailed in the body under Chronic fatigue syndrome#Exercise therapy. The compromise wording in the lead, "a gradual increase in activity suited to individual capacity can be beneficial in some cases" is more appropriate because the Sharpe cohort does respond to GET while the other cohorts may not. This is referenced by the source you applied also. Ward20 (talk) 00:59, 17 June 2018 (UTC)

Agree with User:Ward20. Doc James (talk · contribs · email) 15:53, 17 June 2018 (UTC)

I think there are a couple of problems with the article lead: (a) It says that treatment is merely symptomatic. Yet as far as I'm aware CBT and exercise therapy studies are based on the fear avoidance theory, which is held to describe the fundamental disease mechanism, and therefore CBT/GET/exercise therapy are not merely symptomatic treatments, making the article lead self-contradictory. (b) The article lead contains a moderate claim for the efficacy of CBT and GET/exercise therapy in ME/CFS. Yet even that moderate claim is disputed in the real world. It depends on, for example, the view taken of the merits (or lack thereof) of causal inference in psychological research (http://journals.sagepub.com/doi/full/10.1177/1745691613491271), and the Oxford criteria (https://www.ncbi.nlm.nih.gov/books/NBK379582/; https://www.tandfonline.com/doi/ref/10.1080/21641846.2017.1273863?scroll=top). Yet in the article lead there is no balancing statement whatsoever. Breachdyke (talk) 14:05, 19 June 2018 (UTC)

The statement in question is supported by a 2017 Cochrane review.[1] This review states "Patients with CFS may generally benefit and feel less fatigued following exercise therapy, and no evidence suggests that exercise therapy may worsen outcomes." We paraphrase that. Doc James (talk · contribs · email) 14:45, 19 June 2018 (UTC)

And the opening CDC source says "There is no cure or approved treatment for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). However, some symptoms can be treated or managed" - which supports the text saying treatment is symptomatic. To say otherwise, we'd need sources. Alexbrn (talk) 14:46, 19 June 2018 (UTC)

@Breachdyke (talk). a) CBT and GET has not been widely claimed to cure the fundamental disease mechanism for many years. They only moderately affect some symptoms, typical of symptomatic treatment, so there is no contradiction. Even the much criticised PACE trial[2] does not claim that exercise therapy is based on avoidance theory. It is only a hypothesis along others. It certainly did not statistically restore activity to healthy control levels, nor did it affect many other ME/CFS symptoms. b) The lead wording, "a gradual increase in activity suited to individual capacity can be beneficial in some cases", was carefully chosen to be inclusive of exercise and pacing therapies, not just GET. Reviews that are highly critical of GET still state that careful exercise therapy can be beneficial to some patients.[3][4]. The caveats that the AHRQ discussed about studies using the Oxford criteria have long been in the Exercise section, where you would expect it to be.Ward20 (talk) 21:18, 19 June 2018 (UTC)

Yes. The problem is that a subset of patients categorically reject this, on the basis that they (falsely) believe it implies that CFS is psychosomatic. They insist that it is "myalgic encepahlomyelitis", but there is no clear evidence that it is, in fact, a form of encephalomyelitis, there is no actual consensus on the aetiology at all. Guy (Help!) 09:04, 20 June 2018 (UTC)

Ward20, "CBT and GET has not been widely claimed to cure the fundamental disease mechanism for many years"; the PACE trial (which is the largest study of its kind and has not been retracted) claimed that CBT and/or GET effected in some patients a "strict criterion of recovery" (https://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(11)60172-4.pdf?code=lancet-site). It is difficult to see how such a claim could be reconciled to the notion that CBT and GET are not claimed to be capable of curing the fundamental disease mechanism. "Even the much criticised PACE trial[5] does not claim that exercise therapy is based on avoidance theory"; compare the study protocol, "CBT will be based on the illness model of fear avoidance ... GET will be based on the illness model of deconditioning and exercise intolerance" (https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-7-6). If the PACE investigators did not think the deconditioning was the result of fear avoidance, then what did they think it was the result of? Also, "The caveats that the AHRQ discussed about studies using the Oxford criteria have long been in the Exercise section, where you would expect it to be." This does not release the article lead from NPOV. It still needs a balancing statement (a single sentence would suffice). DocJames, the Cochrane review is mostly based on Oxford studies, so until that issue is noted in the article lead it remains selective and therefore biased. Re Cochrane on worsening outcomes, "GET was associated with higher numbers of reported adverse events compared with counseling therapies or controls. Harms were generally inadequately reported across trials." (https://www.ncbi.nlm.nih.gov/books/NBK379582/). It's also self-evident that questions of selection criteria and harm cannot be separated (I mean in any given study, just what is the disease that is being studied?). Another issue which no-one has replied to is the whole issue of causal inference in psychological research ((http://journals.sagepub.com/doi/full/10.1177/1745691613491271) - given the widespread limitations of study design, is there (for the most part) any rational basis for it?. Guy, "there is no actual consensus on the aetiology at all"; The success or otherwise of particular treatments allows inferences of aetiology and that is one reason why presentation of evidence re treatments needs to carefully observe NPOV. Aetiology is hardly a trivial matter. Psychotherapy of all forms includes an appeal to the volition of its subjects – ultimately a person’s will is involved because a totally recalcitrant patient cannot be a subject at all. Therefore a patient who is psychosomatically ill can, ultimately, be blamed for a failure to improve physically. This is a key point in the controversy around ME/CFS: in psychosomatic illness blaming patients is potentially justifiable, but in physical illness (where mental factors are not causally significant) it is not. Breachdyke (talk) 11:27, 20 June 2018 (UTC)