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 “shown to be effective.”
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 University’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 Segal’s review–“Child and adolescent chronic fatigue syndrome/myalgic encephalomyelitis: where are we now?”–I wrote and alerted her to my concerns about Professor Crawley’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 editor’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–“A 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.” 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 receive—if anyone were having analog conferences these days.
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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.
Here’s how Segal and her colleagues described the point of the research: “This 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.” (I will be nitpicky here and point out that this key sentence is grammatically deficient. The comma is confusing—“parental separation” and “lack of contact with a parent” are two separate domains, so why they are separated by a comma and not the word “and” is unclear. Just saying.)
The authors declare that “emotional distress” is known as a trigger for CFS/ME and that “adverse childhood events” 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 study’s theoretical framework is shaky. The proposed relationship between the presence and or/severity of illness and the domains investigated—“parental separation” and “lack of contact with a parent”—is opaque. What is the mechanism that links these phenomena? I don’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, ok—it doesn’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 “10.6 % of families nationally defined as a one parent household.” 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. “Parental separation or lack of contact is not related to severity of CFS at diagnosis in this cohort,” 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?
Comments
12 responses to “No Links Between “Parental Separation” and Kids’ ME Severity”
David wrote:
“So, ok—it doesn’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!”
But it’s not really ‘Good for them’, is it? How/why did these children have this data in their clinic records in the first place? What business is it of these clinicians to delve into the family set-up or circumstances of these sick children, unless all these families are under suspicion of child abuse? Why aren’t the clinicians focussing on finding out what’s wrong with the children to try to make them better instead of indulging their middle- or academic-class prejudices? Oh, silly me, that’ll be the BPS model then, but do they delve into all this for children with cancer or any well-elucidated chronic illnesses? I doubt it.
The problem here seems to be the equation of the presence of medically unexplained symptoms (‘MUS’), including ME/CFS symptoms, with the risk of child abuse, as per this 2018 MUS guide – https://paedmhassoc.files.wordpress.com/2018/12/mus-guide-with-leaflet-nov-2018.pdf that was launched at the RCPCH. On page 12 of this guide, doctors are told that it’s essential to take a “comprehensive social history” that includes home and school circumstances and peer relationships. Ah, that explains all that lovely family data then. On page 16, they are informed that children or young people with MUS are at higher risk of abuse and neglect, that the “presence of MUS may be the only clue” and that they may “need to involve social services early”.
“The ONLY clue”? This is a dire situation for families of children with ME/CFS to find themselves in – under suspicion from the start. Of course child protection is important, but this is removing the need for child abuse red flags before investigating families – the mere presence of ‘unexplained symptoms’ is apparently being viewed as a red flag itself.
This MUS guide also claims that “it is known that MUS cost the NHS significant amounts of money (£3.1 billion pa)”. The authors clearly haven’t read the relevant paper or they’d be aware of its many shortcomings. The MUS guide informs doctors that between 4 and 10% of adult patients who are initially thought to have MUS are misdiagnosed. The authors clearly aren’t on top of the much-cited Nimnuan et al 2000 adult study by Professor Sir Simon Wessely where the overall MUS misdiagnosis rate in practice was 26.7%. Maybe they should spend more of their time scrutinizing the ME and MUS literature and less of their time investigating innocent families?
Also, people shouldn’t be under the illusion that UK doctors are doing research out of some noble determination to expand medical knowledge or heartfelt desire to make life better for their patients. Research is an element/domain in the clinical excellence awards (CEA) scheme -https://www.bma.org.uk/pay-and-contracts/pay/consultant-award-schemes/consultant-award-schemes-and-clinical-excellence-awards-cea via which they can increase their remuneration. The CEA scheme is currently under discussion/review – https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/929948/summer-2020-focus-group-discussion-papers.pdf- and there is a proposed change to the “research and innovation” domain, (domain 4- see page 14) to rename it “innovation and research” and to include the research of new service models and utilisation of IT that can deliver new models of healthcare. Like ‘Regul8′ for IBS, I’m guessing.
No credible scientist would entertain the idea that physical symptoms that can’t currently be medically explained must therefore be of psychological rather than physical/’pathophysiological’ origin. Scientists are, almost by definition, accepting of the concept that there is an awful lot that we don’t currently know or understand. If doctors don’t get that, then they should stay away from research and concentrate on what they’re better at. In my opinion, it’s a serious mistake to link their remuneration to doing research work. Even if they have the correct mindset, as practising doctors they likely don’t have the time to study their research subject area properly and they consequently rely on believing what they are told is the truth instead of checking it all out carefully for themselves. They then risk becoming puffed up chumps who fail miserably at science, setting store by their own acquired false illness beliefs and putting their faith in people they shouldn’t trust. A recipe for disaster.
CT I think your question is a very relevant one:
“ How/why did these children have this data in their clinic records in the first place? What business is it of these clinicians to delve into the family set-up or circumstances of these sick children, unless all these families are under suspicion of child abuse?”
There are already significant concerns about inappropriate invocation of child protection procedures in connection with some UK paediatric ME services. The are worrying examples of this in relation to families where parents have rejected the controversial graded exercise therapy (GET) even though this (up to now officially sanctioned) intervention is profoundly worrying: given that by definition ME is worsened by over exertion and multiple surveys evidence it can worsen symptoms, possibly permanently, with some 50% or more of recipients with ME.
The on line forums further proved examples that families feel the need to lie to their ME clinicians about their implementation of GET at home, where they believe it is harming the child. That they feel obliged to pretend compliance out of fear of child protection procedures suggests that for some at least there is a disastrous failure in the clinical relationship.
One of the specialist services that people have expressed concern about in this area is Prof Crawley’s Bath service. Interestingly she also goes on to postulate an new diagnostic category of ‘persistent refusal syndrome’ where patients or families that disagree with her controversial interventions are seen as having a psychiatric disorder.
Retrospective studies on the impact of childhood experiences on subsequent health are methodologically fraught, and even if they suggest an association tell us little about causality. However the current study does not even suggest an association.
Given the serious international controversy about the quality and integrity of the science underpinning the BPS approach to ME it would seem that this abstract is yet another example of researchers and clinicians advocating behavioural interventions for ME seeking to force the evidence and people with ME and/or their families to fit in with their existing beliefs rather than to scientifically asses the evidence. This is behaviour more akin to a cult, rather than the scientific and clinical establishment.
Attaboy David T! Worth every dollar donated and more.
Thank you so much for this commentary. It is vital as we go forward with the fight against MUS, IAPT ( FII) etc. being given credence and the steer in new service creation.
The situation is no better, in fact it seems worse, than that which existed in the 1990’s in Suffolk and elsewhere in regard to parents all being tarred with the ‘harming parent’ brush and being disbelieved.
These seems to be career paediatricians, with hangers on, still intent on building their ‘reputations and influence’; not even well meaning, but dumb.
They seem to possess an innate ability to miss the obvious……. professional arrogance?…, a refined superiority complex?
They need to be made aware of their apparent effective professional ‘misconduct’ her surely?
The ME Charities should consider a well crafted rebuttal and a copy sent to NICE Review Chair, a paediatrician and co chair, a palliative care consultant?
Are you up to creating such a letter to be co signed?
Apart from my views expressed above, at a time of non existent services and pressure on funding this work constitutes a gross waste of public money!
Have they not tracked the debates & controversy which have been going on in the 8 years since this cohort record was created? ( This includes debate in Parliament tabled by Carol Monaghan?)
I can only suggest the team responsible for this are in their own little isolated bubble with closed minds and cloth ears. What other explanation could there possibly be?
CT said: “In my opinion, it’s a serious mistake to link their remuneration to doing research work. Even if they have the correct mindset, as practising doctors they likely don’t have the time to study their research subject area properly and they consequently rely on believing what they are told is the truth instead of checking it all out carefully for themselves. They then risk becoming puffed up chumps who fail miserably at science, setting store by their own acquired false illness beliefs and putting their faith in people they shouldn’t trust. A recipe for disaster.”
Yes, I’ve been at the receiving end of this very recently.
Obviously, “parents who were separated” and “one parent household” are not equivalent categories – but even if patients with separated parents are overrepresented in their cohort, there are other possible reasons why this might be the case: firstly, the attendees of a tertiary care NHS CFS service are not representative of all children with ME/CFS – these children are more likely to have co-morbid illnesses or other complexities than those managed in primary and secondary care. Secondly, as to the assumed causal direction – is it not possible that the severe illness of a child might result in an increased risk of that child’s parents separating?
Additionally, referrals to a service at UCLH are likely to be disproportionately drawn from London; is the one-parent household tally higher for London than the national total?
Peter (Trewhitt) – you commented that:
“….for some at least there is a disastrous failure in the clinical relationship”.
On page 15 of the MUS guide (I mentioned above), doctors are told that they should suspect ‘fabricated and induced illness’ (FII) more when the child’s parent doesn’t ‘accept a psychological approach to symptom management’.
How can there be any good relationship when doctors hold parents who don’t happen to agree with them in such contempt?
Two classic French comments come to mind in the ME/CFS battle. “Cherchez la femme” and “Suivez l’argent”. The femme on the hotseat here seems to be Professor Crawley, in part because she has l’argent and seems to want more. But one comment above suggesting that parents of a ME/CFS child may be more likely to separate due to the difficulty of raising such a child is right on the mark. In the US, family dynamics are often determined by who gets monetary assistance. A single mother can often earn more through Aid to Families with Dependent Children by having additional children than by working an ordinary job, and there is special $ aid available for families with children on the autism spectrum. In the more sensible UK, such aid is not forthcoming for ME/CFS children (or adults). Correct me if I am wrong in this.
Given that they didn’t find the correlation they were expecting,we can consider the experimental evidence as a strike against the research hypothesis being tested. But as to what that hypothesis might be, there are a couple of obvious candidates (which, to be clear, are not supported by the results of this experiment):
Hypothesis A. The human immune system uses information about the person’s present and past social environment in determining how to deploy resources against fighting viral infection (compare: placebo effects). Under this theory, childhood events such as parental separation in childhood permanently compromise the immune system. (If you want an evolutionary argument for why this should be: the immune system is hypothesised to have evolved to optimally allocate calories between fighting infection vs other tasks under conditions of both benign and not benign social environments, with the optimum being to deploy more energy against infection in benign social environments)
Hypothesis B. CFS is hypothesised to be a PTSD type condition, with the particular trauma being the viral infection. The effects of different types of trauma are further hypothesised to be cumulative, so that one type of trauma (e.g. parental separation during childhood) increases susceptibility to other forms of trauma (e.g, viral infection)
As you say, the statistical connection between childhood trauma and what is being measured experimentally (e.g. parental separation) is not at all clear.
P.S. CFS isn’t my own area of research. The above is just from a very passing glance at theories mooted in the CFS and related literature.
As I said, this isn’t my research area. (And I am somewhat shocked that these papers on CFS got past the referees, given refereeing standards elsewhere … apart from the junk journals, of course),
From a quick glance at the CFS section of some textbooks that happen to be on my bookshelf, the typical citation on CFS vs childhood adversity looks to be this:
Psychosomatics
Jan-Feb 2001;42(1):21-8. doi: 10.1176/appi.psy.42.1.21.
Victimization in chronic fatigue syndrome and fibromyalgia in tertiary care: a controlled study on prevalence and characteristics
B Van Houdenhove 1 , E Neerinckx, R Lysens, H Vertommen, L Van Houdenhove, P Onghena, R Westhovens, M B D’Hooghe
I make no claims about its methodological soundness. (Given what we seen so far, I would not be in the least surprised if Dr Tuller finds a ton of problems with it)
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