Illness beliefs of adolescents with CFS and their parents: the perceived causes of illness and beliefs about recovery, 2018,Loades et al (inc Chalder)

Andy

Andy

Senior Member (Voting rights)
Abstract
The objective here was to explore beliefs about the causes of chronic fatigue syndrome (CFS) in a cohort of adolescents with CFS and their parents, and to explore the adolescent’s beliefs about recovery. Questionnaires were administered to a clinical cohort of adolescents (n = 104) and their parents (n = 102 mothers and 63 fathers), presenting to a specialist CFS unit. These included a question about the causes of their illness. Adolescents were also asked about the projected timeline of their recovery from CFS. The most commonly endorsed causes of CFS by adolescents and their parents were a virus and/or contextual factors and stress. Adolescents and their parents were in close agreement about the causes of CFS. Most adolescents said they did not know how long it would take them to recover from CFS. Informing adolescents about the prognosis for CFS is an important aspect of treatment.
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Paywalled at https://www.degruyter.com/view/j/ijamh.ahead-of-print/ijamh-2017-0197/ijamh-2017-0197.xml
 
Most adolescents said they did not know how long it would take them to recover from CFS. Informing adolescents about the prognosis for CFS is an important aspect of treatment.
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So they start with a sensible view that the prognosis is unknown, and end up being told some pack of lies. How is that ethical?
 
What's the point of this? That's literally the opposite of how science works. "What do you think you have?" "I don't know Doc, that's literally why I'm here!". Other than reinforcing the belief that belief is the cause of this disease, there is literally no use for this, even if it was rigorously done.

Can you imagine these doctors going to the mechanic and being asked to guess what the problem with their car is? How stupid would they find that? Have they abandoned all common sense?

Who is enabling this idiocy? Physics departments and research institutions don't give research grants to people who want study the augurs of Moon-Saturn relations and astrological foundations of supernovae. It's not as if there was nothing left to study anymore. They're wasting our time while failing the people they actually could help by being distracted with this nonsense.
 
This paper poses fascinating questions. How do you perceive a belief? Is a perception of a belief something different from the belief? Might one "perceive" a belief when there is no belief to be "perceived", as one might perceive an oasis when there is only a mirage?
 
Given that beliefs about prognosis have been shown to be important in determining outcome in adults with CFS [7], informing adolescents with CFS about the evidence, which indicates good recovery rates with
treatment [10] is an important intervention for specialist services to undertake.

[10] Nijhof SL, Bleijenberg G, Uiterwaal CS, Kimpen JL, van de Putte EM. Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial. Lancet. 2012;379(9824):1412–8.
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The patients in the control group were given usual care, which included individual or group-based rehabilitation programmes, cognitive behavioural therapy face-to-face, or graded exercise treatment, or both, by a physical therapist. Records were kept of all the care given.
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In the usual care group, 38 (57%) of 67 participants received more than one treatment. Usual care involved cognitive behavioural therapy (44 [66%]), rehabilitation treatment (inpatient or outpatient treatment, individual or group programme; 15 [22%]), physical treatment (mostly graded exercise therapy; 33 [49%]), or alternative treatment (16 [24%]). Only seven (10%) adolescents did not receive any treatment because treatment was not available within an acceptable travelling distance.
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The normal English clinics where these people work offer something closer to the usual care group in the FITNET trial (rather than online CBT). For it, the recovery rate is 8% in the quoted paper, using a broad definition of recovery; using a stricter definition, the recovery rate was 5% (see appendix of FITNET trial).

Based on this information, the participants shouldn't be told to expect recovery!

And of course this is only at one time point, some of these people could relapse!
 
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In the usual care group, 38 (57%) of 67 participants Adolescents completed questionnaires including a question about the causes of their illness, giving fixed choice options (virus, activity – too much exercise/too little exercise, and context – environment, family problems, problems at school, problems with friends, stress), with respondents selecting all that applied.
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Not a full selection of theories there.
 
Attributing CFS to a viral cause may be advantageous because the explanation is easy to understand and to explain to others, and it may also be self-protective as it precludes guilt, blame or social stigma that may be associated with alternative explanations. However, the problem of attributing CFS to a viral cause is that it may result in feeling helpless around self-efficacy for recovery [8].
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Maybe there is a value in sometimes thinking about these issues. But it's also important to give patients factual information or allow them have their own beliefs if they are definitely not incorrect.

There is plenty of evidence that the illness was triggered in many cases by a virus or other infection.
 
Dolphin said:
The normal English clinics where these people work offer something closer to the usual care group in the FITNET trial. For it, the recovery rate of 8% in the quoted paper, using a broad definition of recovery; using a stricter definition, the recovery rate was 5% (see appendix of FITNET trial).

Based on this information, the participants shouldn't be told to expect recovery!

And of course this is only at one time point, some of these people could relapse!
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We have this data for adults from English clinics at five year follow-up. It suggests non-recovery is very common. My guess is the recovery rate is probably lower than what newly diagnosed people expect rather than higher i.e. many patients should probably be warned to be less optimistic.

Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England
  • Simon M Collin
  • Esther Crawley
https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2437-3

Do you think that you are still suffering from CFS/ME?
Yes 82.7% (81/98)
No 8.2% (8/98)
Uncertain 9.2% (9/98)
 
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NelliePledge said:
guess your prognosis - who does she think they are, Mystic Meg (we need a crystal ball emoji)
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I would trust a Medium before many of the claimed experts in the NHS, and I don't even believe in psychic advice. Its getting to be more of an issue here in Australia too. The damage being done is so severe, globally, that I believe certain careers should be stopped ... no more research or giving advice for ME permitted.
 
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