By David Tuller, DrPH
When last heard from, Terry Segal, a pediatrician at University College London, was the senior author of a 2019 review of pediatric treatments for what she and her colleagues called “CFS/ME.” The review was published in Current Opinion in Pediatrics, a high-impact journal. The abstract for the review singled out the Lightning Process as having been â€œshown to be effective.â€
The 2017 Lightning Process study cited in the review was published by Archives of Disease in Childhood, a BMJ journal. The lead investigator was Professor Esther Crawley, Bristol Universityâ€™s methodologically and ethically challenged pediatrician and star grant recipient. In the conduct and reporting of the trial, Professor Crawley and her colleagues engaged in actions that appear to meet standard definitions of research misconduct.
After Current Opinion in Pediatrics posted Segalâ€™s review–“Child and adolescent chronic fatigue syndrome/myalgic encephalomyelitis: where are we now?”–I wrote and alerted her to my concerns about Professor Crawleyâ€™s study. She sent me a curt note in response, and that was that. Some months later, Archives of Disease in Childhood posted a 3,000-word correction along with a 1,000-word editorâ€™s note offering unconvincing rationalizations for not retracting the paper.
Now Archives of Disease in Childhood has published a short research report from Segal and two colleagues–â€œA cohort study of whether parental separation and lack of contact with a parent predicts disease severity at diagnosis in young peoples [sic] chronic fatigue syndrome/myalgic encephalomyelitiss.â€ This is not a peer-reviewed paper. It has been published as part of a package of summaries of research being presented at a virtual conference sponsored by the Royal College of Pediatrics and Child Health and being held between September 25th and November 13th.
The presentations themselves most likely include information about funding sources and potential conflicts of interest as well as references for key points made. But these details wouldn’t be included in the fat book of conference proceedings that all in-person attendees would receiveâ€”if anyone were having analog conferences these days.
No link between parental status and disease severity
For this retrospective study, the investigators reviewed the notes of 123 adolescent CFS/ME patients from 2012 to 2014. They assessed whether they had experienced a parental separation and lack of contact with a parent, and whether those factors were associated with the presence and severity of the illness. This short text already allows us to assess how ill-informed this research is. Perhaps a future publication providing further information, or a review of the conference presentation itself, would offer further insight into the folly of the enterprise.
Hereâ€™s how Segal and her colleagues described the point of the research: â€œThis cohort study looked at whether those with CFS have a higher incidence of parental separation, lack of contact with a parent and whether this sub-group have more severe disease at diagnosis.â€ (I will be nitpicky here and point out that this key sentence is grammatically deficient. The comma is confusingâ€”â€œparental separationâ€ and â€œlack of contact with a parentâ€ are two separate domains, so why they are separated by a comma and not the word â€œandâ€ is unclear. Just saying.)
The authors declare that â€œemotional distressâ€ is known as a trigger for CFS/ME and that â€œadverse childhood eventsâ€ predict it. I would like to know which studies they are citing for these assertions. Then I could assess for myself whether they actually prove what Segal and colleagues say they do. When it comes to research in this field, much of what has been claimed by members of the biopsychosocial ideological brigades is not supported by their own data–Professor Crawley’s Lightning Process study is a prime example. Since Segal promoted that disaster in last year’s review of pediatric treatments for CFS/ME, it is hard to trust her scientific acumen.
And the studyâ€™s theoretical framework is shaky. The proposed relationship between the presence and or/severity of illness and the domains investigatedâ€”â€œparental separationâ€ and â€œlack of contact with a parentâ€â€”is opaque. What is the mechanism that links these phenomena? I donâ€™t really get the basis for the relationship beyond the unproven assumptions of the investigators.
Being in a single-parent household can obviously be stressful, but living in a conflictual and miserable two-parent household can also present chronic exposure to emotional distress. Contact with an abusive parent can cause more emotional distress than no contact with that parent at all. Without knowing more about the reasons for parental separation and/or lack of parental contact, expecting this investigation to yield meaningful information seems naive and unwarranted.
So, okâ€”it doesnâ€™t make a lot of sense to me, but whatever–the investigators presumably had the data from clinic records and figured they could check it out. Good for them!
They found that 38 % of patients had parents who were separated. Then, for unclear reasons, they contrast that number with the â€œ10.6 % of families nationally defined as a one parent household.â€ I guess their point is that 38 % is higher than 10.6 %, but the comparison is impossible to interpret. Many people with separated parents do not live in one-parent families. Are step-parents an unknown thing in the UK?
And then, not surprisingly, the research yielded zero evidence to support their main notion about disease severity. â€œParental separation or lack of contact is not related to severity of CFS at diagnosis in this cohort,â€ they report. Hm. No connection.
Yet these null findings do not seem to have fazed the investigators or dampened their enthusiasm for their theoretical constructs. To them, the appropriate response to their disappointing results is to push for a larger study and continue to search for psycho-social correlates of illness and illness severity. I guess they think a bigger pile of data will help them locate the evidence they know must be there but could not be teased out with this particular data set. Don’t they have better things to do?