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

Paywalled at https://www.degruyter.com/view/j/ijamh.ahead-of-print/ijamh-2017-0197/ijamh-2017-0197.xml

 

guess your prognosis - who does she think they are, Mystic Meg (we need a crystal ball emoji)

 

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.

 

I guess trudie is informing the youngsters that they can recover in 6-12 months if they follow her treatment. Any “deviation “ from this is assessed in terms of belief behaviour etc.

 

When the patient and family blaming begins

 

An utterly appalling question.

WTF has gone wrong with medical science in the UK?

 

Why oh why do they get the money for this?!

 

At best, it could be a case of commitment bias. https://en.wikipedia.org/wiki/Escalation_of_commitment

 

Ah, interesting.

 

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?

 

Is there ever a mirage without an oasis? It may be folklore but I was under the impression that a mirage was basically a displaced image, so the oasis exists, just not where it looks like it is?

So maybe the belief exists, just not in the person it is attributed to?

 

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!

 

So they weren't unduly pessimistic.

 

Not a full selection of theories there.

 

Not a particularly pessimistic group.

 

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.

 

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)

 

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.