A cohort study of whether parental separation and lack of contact [...] predicts disease severity [...] in young peoples ME/CFS, 2020, O'Donnell et al

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Tom Kindlon

Senior Member (Voting Rights)
https://adc.bmj.com/content/105/Suppl_1/A188.1
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Abstracts
British association of general paediatrics and YPHSIG (young people’s health special interest group)

G531(P) A cohort study of whether parental separation and lack of contact with a parent predicts disease severity at diagnosis in young peoples chronic fatigue syndrome/myalgic encephalomyelitis
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  1. N Ayadi O’Donnell1,
  2. A McCourt2,
  3. T Segal2
Author affiliations

Abstract
Aims Chronic Fatigue Syndrome (CFS)/myalgic encephalomyelitis (ME) is a complex condition of variable severity, affecting the physical and mental wellbeing young people. Triggers are recognised such as infection, physical illness or emotional distress. There has also been a link between adverse childhood events and likelihood of CFS/ME in later life. 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.

Methods Retrospective analysis of the notes of 123 patients who attended a tertiary level adolescent CFS/ME service between April 2012 and April 2014 was conducted with further sub-group breakdown of those with parental separation and lack of contact with a parent with analysis on whether this group had an increase disease severity of CFS/ME at diagnosis.

Results Out of a total of 123 patients, 38% (n=45) had parents who were separated, compared with 10.6% of families nationally defined as a one parent household. Furthermore, 66% (n=32) with separated parents had lack of contact with at least one parent. Most patients in this cohort had moderate CFS at diagnosis (defined by NICE as having reduced mobility and restriction in all activities of daily living). Further sub-group analysis of those with separated parents showed no difference in severity compared to the non-separated group (p=0.69). There was no difference in disease severity for the group who lacked contact with at least one parent (p=0.51).

Conclusion Parental separation or lack of contact is not related to severity of CFS at diagnosis in this cohort. Larger cohort analysis of the demographics of those with CFS/ME is needed to attempt prediction of those who are more at risk of having severe CFS/ME, the impact of family history of CFS/ME and the impact on school attendance and bullying on severity. Further analysis of family structure and whether this impacts on response to treatment is also needed as this may help influence the structure and support of treatment.
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I think that if sufficiently sensitive methods were applied, one would find a correlation between these kinds of things and CFS. My reasoning is that a genetic predisposition in families would cause some increase in both parental separation (due to CFS in one parent, or possibly undiagnosed mild CFS or subclinical) and later CFS in the child.
 
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Out of a total of 123 patients, 38% (n=45) had parents who were separated, compared with 10.6% of families nationally defined as a one parent household.
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That doesn't sound like a valid basis of comparison.

For example, there are lots of households with two parents, one of whom may be a step parent to some or all of the children. So for this study, that would count as separated parents, but not as a one parent household.

Also separations happen over a lifetime of a marriage, with more as time goes on, so there may be more adolescents with separated parents than toddlers with separated parents, yet the single parent data doesn't specify ages of children.

In fact, it's a mess.

And despite the fact that they found no link with illness severity, they still conclude there is a connection and they'll find it if only they can be funded to do more research.
 
strategist said:
I think that if sufficiently sensitive methods were applied, one would find a correlation between these kinds of things and CFS. My reasoning is that a genetic predisposition in families would cause some increase in both parental separation (due to CFS in one parent, or possibly undiagnosed mild CFS or subclinical) and later CFS in the child.
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Also, particularly when health is assessed according to how negatively one fills in questionnaires, I'd assume that personal/social/emotional difficulties would often correlate with health difficulties. One problem with 'fatigue' is that it could be worsened by almost any hardship in life, depending on how it's defined.
 
Esther12 said:
Also, particularly when health is assessed according to how negatively one fills in questionnaires, I'd assume that personal/social/emotional difficulties would often correlate with health difficulties. One problem with 'fatigue' is that it could be worsened by almost any hardship in life, depending on how it's defined.
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It wouldn't be surprising that people with adversities and sustained stress in childhood would have poorer health as adults across a number of domains. But to assess the relationship you'd actually have to measure something that it makes sense to measure.
 
This seems to be an abstract-only that is part of a conference presentation. I assume it hasn't been peer-reviewed--the journal seems to have published the conference abstracts. Does anyone see anything about funding? I assume the presentation itself has that but I see nothing in the abstract.
 
Great points on this thread.

If these people wanted to delve into family relationships in a useful way, they could look at what happens to families when a child gets either ME/CFS or another similarly debilitating chronic illness. i.e. rates of marriage breakdown and decreased extended family connections.

It would be helpful to have an exploration of what might cause the stress - e.g. families suffering financially when a parent has to care for the child; parental feelings of not being able to cope, or distress about the future; stigma and disbelief (resulting from BPS conversion disorder concepts; lack of medical support). That might lead to some ideas that actually help people in this situation, rather than just heaping further blame and stress on them.
 
Triggers are recognised such as infection, physical illness or emotional distress.
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Forgive me if I missed it, but I don't recall "emotional distress" being a "recognized trigger" of ME/CFS.
Possibly, it's a reference to the next line:
There has also been a link between adverse childhood events and likelihood of CFS/ME in later life.
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That "link" has always seemed extremely dubious to me and, even if it were somehow true in some cases, it would be an antecedent, not a trigger.
 
Forbin said:
Forgive me if I missed it, but I don't recall "emotional distress" being a "recognized trigger" of ME/CFS.
Possibly, it's a reference to the next line:


That "link" has always seemed extremely dubious to me and, even if it were somehow true in some cases, it would be an antecedent, not a trigger.
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Coyne did a good riposte of ACEs .
Sadly they are embedded in multiple spheres of life here and education is particularly affected. Some teachers even use them as predictive tools. There are few people who have gone through life without adverse childhood events of some nature, but as applied it is a very blunt tool , originally devised for educating ( social workers etc. ) , not a policy instrument .


Like most things , there is a grain of seemingly sensible ideas, then sadly it all goes to pot.

FII will no doubt follow on rapidly .
 
Couple of questions

Do they not have to cite sources when stating there is a causal link? Where is the evidence to back up this statement?

There has also been a link between adverse childhood events and likelihood of CFS/ME in later life.
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Also, is there a way to find out who funds a study like this? Do studies not have to declare funding sources or do these have to be requested by FOI?

Thanks. :)
 
SedulousSloth said:
Do they not have to cite sources when stating there is a causal link? Where is the evidence to back up this statement?
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There would be more expectation in a full published paper to cite sources but as we see often in bPS studies such as these, they often take, and get away with, a relaxed attitude to that sort of thing.

This was published in
October 2020 - Volume 105 - Suppl 1

Royal College of Paediatrics and Child Health, Abstracts of the RCPCH Conference–Online, 25 September 2020–13 November 2020
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so it might be that it only ever exists as an abstract, or that we see the full paper published at some time in the future.

SedulousSloth said:
Also, is there a way to find out who funds a study like this? Do studies not have to declare funding sources or do these have to be requested by FOI?
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Abstract only publications, from what I've seen, tend not to declare funding sources. Given that O'Donnell is employed by Children and young people’s services, UCL Hospital FT, London, UK, and McCourt and Segal are employed/based at Medical School, UCL, London, UK this might be something that they wrote up in their spare time so there might not be any direct funding.

And welcome to the forum :)
 
chrisb said:
Didn't we encounter Segal before with the Lightning Process?
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Yes, she was an author of a review of pediatric ME/CFS treatments that mentioned ONLY the Lightning Process in the abstract as being supported by the evidence. I wrote her a couple of times, but never heard back. From that experience, my opinion is that her work cannot be taken seriously. As this new piece of nonsense illustrates.
 
Andy said:
so it might be that it only ever exists as an abstract, or that we see the full paper published at some time in the future.
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Right. This is not a peer-reviewed publication and although published in the journal is hasn't been reviewed or endorsed by the journal or vetted through an editorial process--assuming this is what it seems to be, which is publishing the abstracts for presentations at the conference. The slide-show presentations would almost definitely include funding if any, conflicts of interest if any, and references to key points made. But you wouldn't expect that in what is essentially the information from the fat book that conference attendees would receive about all the panels.

So in this case we only have the brief text itself by which we can assess how stupid and ill-informed this research is. Perhaps a future publication providing further information will allow us to enhance our assessment of the stupidity of the enterprise.
 
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