From the discussion section:
ME/CFS research is a contentious topic as, although 4 decades of study since case definitions of ME and CFS were published in the mid-to-late 1980s [47], a biomedical cause or biomarkers of disease remain elusive.
Prospective studies that control for ascertainment bias have failed to show an association between acute infection and development of ME/CFS [48]. In contrast, several studies have found associations between the onset of ME/CFS and elevated premorbid stress, psychopathology, severe life events, or difficulties [49,50]. These findings should not be construed as evidence that symptoms associated with ME/CFS are not real, but as support that the central nervous systems’ response to biological, psychological, and social factors may be more likely to explain symptoms versus a specific disease process [51]. However, our findings suggest this paradigm may be unacceptable to many people living with ME/CFS
Ref 48 is by Wessely from 1995.
49, 50 are from 2006 and 2009
51 is the dreadful Oslo fatigue consortium "Chronic fatigue syndromes: real illnesses that people can recover from."
Our analysis suggests the updated NICE guideline was well-received by patients and may be associated with the increase in positive tweets at this time. However, 4 members of the 2021 NICE guideline development committee resigned in protest [56], representatives of 7 UK medical groups (including the Royal College of Physicians) signed a joint statement relaying concerns with the guideline [57], and more than 50 international specialists analyzed the guideline and concluded that “the consequences of this are that patients may be denied helpful treatments and therefore risk persistent ill health and disability” [58]. At present, there are at least 2 ongoing campaigns by ME/CFS advocacy groups to have other publications they disagree with retracted: a Cochrane review that found GET was helpful for ME/CFS [59] and a deep phenotyping study of patients with ME/CFS that found functional limitations were due to “altered effort preference” [60].
58 is the White Anomalies article trying to argue against NICE.
59 is the infamous Cochrane review
The notion that recovery from ME/CFS is not possible is inconsistent with the evidence. Although only 5% of patients experience full recovery without targeted intervention [66], observational studies have reported a recovery rate of 18% following CBT [67,68]. There are entire organizations dedicated to recovered patients, such as Recovery Norge [69]. Interviews with patients who have fully recovered from ME/CFS reveal a consistent pattern of engagement with graduated exercise and psychotherapy to increase self-agency [70,71]. Furthermore, recovery from ME/CFS is associated with not attributing illness to a physical cause and a greater sense of control over symptoms [66]. However, patients who achieve recovery report conflicts with patients who have not, including skepticism about whether they had ME/CFS. Once patients recover from ME/CFS, they are less likely to remain engaged with online support groups [72].
66 is a systematic review from 2005.
67 and 68 are by Chalder and Wessely.
Notable that they don't know of any other 'recovery organisations' and have to wheel out Recovery Norge again.
70 and 71 are both based on interviews with a few patients, Busse is co-author on one of them.
Note that apparently patients' stories are useful evidence if they tell of recovery, but dismissed if they tell of being harmed.
Implications
Our findings highlight several important issues. First, although current evidence supports exercise therapy [77] and CBT [78] for the management of ME/CFS, some patients find these approaches unacceptable. In part, due to concerns about harm (eg, PEM following GET) and stigmatization (with CBT). Further research is needed to inform how best to support patients’ engagement with evidence-based care. Second, patients often report unsatisfactory health care encounters leading to disengagement and a desire to attend clinicians that view ME/CFS as purely physical disorder. For example, some surgeons offer cranial and spinal decompression as a treatment for ME/CFS [79], despite a lack of evidence supporting this approach. These findings reinforce the importance of building therapeutic relationships with patients living with ME/CFS that include addressing possible concerns about mind-body treatment approaches. Patients who view their health care provider as sympathetic may be more willing to engage in shared decision-making about interventions they are considering. Third, our findings with respect to the potential influence of advocacy efforts on science are especially critical given the increasingly recognized importance of including patient partners in research [80]. Involvement of patient partners can improve the quality and relevance of research efforts [81]; however, participants with important intellectual conflicts of interest can compromise the research process and reduce the trustworthiness of results [82]. Finally, ME/CFS is not the first postinfectious syndrome, and will not be the last [83]. The latest variant is PCC, which, at present, is the focus of considerable attention and research funding. This presents important opportunities to advance our understanding of the etiology, prognosis, and effective management of this disorder. Such efforts would be more valuable if they considered the degree to which results may be generalizable to postinfectious fatigue syndromes in general.
77 is the Cochrane review.
The bit about patient involvement and conflicts of interest seems to twist the meaning. 81 is a positive article about patient involvement, and 82 discusses strategies for ensuring guideline panel members don't have intellectual or financial conflicts of interest. By linking the two with a 'however', Busse seems to imply that it is the involvement of patients that causes conflict of interest, which is rubbish.
Edit: Note also that Busse seems unaware of White and Sharpe's massive intellectual and financial conflicts of interest. And all the others of many of the BPS cabal.
Future Directions
Twitter is an important source of information and communication for people living with ME/CFS. The degree to which advice is credible and consistent with the current best evidence is therefore important [84]. Our findings suggest that some individuals living with ME/CFS who post on Twitter believe that GET is harmful, CBT is ineffective, and recovery is not possible. Efforts should be made to promote the dissemination of evidence-based information on Twitter and assist patients in assessing the credibility of statements made on social media. Removing hope of improvement or recovery from ME/CFS can have dire consequences for some patients [85-88]. A survey of members of the Canadian Association of Medical Assistance in Dying Assessors and Providers found that ME/CFS was the second most common nonfatal condition for which medical assistance in dying was requested [89].
This whole paper could have been written by Busse without any input from Twitter. He clearly knew exactly how he would misuse the Twitter data before he saw it. It's all there in the section I have underlined in the conclusion.
The final set of references are to individuals' posts about assisted dying, which I think is abuse of desperate people's tragedies, and not appropriate in this article, especially not as the 'punch line' to the conclusion. It's disgusting. How much lower are these people prepared to go? We have just had the BMJ opinion piece misusing Maeve's dreadful suffering, now this.
I would like the journal to be contacted to complain that their internet research department has been abused to promote nasty prejudiced drivel.
