Using the internet to cope with chronic fatigue syndrome/myalgic encephalomyelitis in adolescence: a qualitative study (Brigden et al., 2018)

Marky said:
Why though? Might as well do a study to check if patients enjoy eating food:whistle:
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I believe they already do this sort of study.

They also regularly check to see if it's hot in India, they have whole teams of people to check if antarctic ice is cold, if the atmosphere continues to exist, and if so.....what exactly is it today etc.

They check all sorts of things, I can't believe no ones checked if people like eating food - if they haven't done the research then possibly this whole growing things/civilisation lark should be reconsidered due to lack of evidence.
 
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While I would certainly prefer the money spent on this survey to have gone on biomedical research, from the little I've read it seems to provide a useful counterpoint to the old "membership of internet groups is a sign of worse outcomes" meme, especially as its done by Crawley.

ETA: It doesn't provide a complete counterbalance to that argument but it provides reasons why use of internet groups can be helpful.
 
Are they saying that the internet is not the vector and multiplier for epidemics of health hysteria? :confused:

But I was assured by world leading expert Sir Simon Says that it is, and that online patient forums in particular are born straight from Lucifer's own bottom. :devilish: :nailbiting:
 
https://bmjpaedsopen.bmj.com/content/bmjpo/2/1/e000299.reviewer-comments.pdf

PEER REVIEW HISTORY

[..]

VERSION 1 - REVIEW
REVIEWER
Reviewer name: van de Putte, Elise
Reviewer Affiliation: Wilhelmina Children's Hospital, General
Pediatrics
No competing interests

The authors elaborate on the advantages of the internet but they could elaborate more on the possible disadvantages by giving examples of misleading or inaccurate medical information and their possible deteriorate effect. Could it be a disadvantage that CFS/ME adolescents won’t give up their diagnosis and want to continue being a patient with CFS/ME, identifying themselves with their (internet) peers?
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Methods
• Selection of participants, it seems important to select participants who are in different stages of disease: start, middle, end, cured.
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Where at least one Dutch clinician is at, believing CBT and the like can cure the illness.
 
Comments from another reviewer, which seem reasonable enough.

https://bmjpaedsopen.bmj.com/content/bmjpo/2/1/e000299.reviewer-comments.pdf

REVIEWER Reviewer name: Andrew, Kennedy Reviewer Affiliation: Central Paediatrics I have no conflict of interest.

REVIEW RETURNED 27 - Oct - 2017

GENERAL COMMENTS

I enjoyed reading the paper but I feel the very small non randomised sample size severely restricts any broad implications from this sample being seen as representative for adolescents with CFS/ME. I believe t he paper needed a larger sample size, inclusive of severely affected individuals as well as those from non english speaking background and those that don't attend a specialist service. I believe the views of those who didn't self identify as using the inte rnet would have been useful in potentially helping to find out why they didn't and what they would be looking for in such sites.

I was quite surprised by the lack of any respondents describing any negative or unhelpful sites, apart from the odd 'dark' pat ient story, as this had been raised an potential concern in the introduction. Either they did and it was not reported or they didn't and found almost all sites helpful but this seems unlikely to be the case for all patients accessing health data on CFS/ME so agin suggests the sample size was too restrictive. I believe this study could and should be a basis for more expansive research in this area .
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Dolphin said:
https://bmjpaedsopen.bmj.com/content/bmjpo/2/1/e000299.reviewer-comments.pdf

PEER REVIEW HISTORY

[..]

VERSION 1 - REVIEW
REVIEWER
Reviewer name: van de Putte, Elise
Reviewer Affiliation: Wilhelmina Children's Hospital, General
Pediatrics
No competing interests


The authors elaborate on the advantages of the internet but they could elaborate more on the possible disadvantages by giving examples of misleading or inaccurate medical information and their possible deteriorate effect. Could it be a disadvantage that CFS/ME adolescents won’t give up their diagnosis and want to continue being a patient with CFS/ME, identifying themselves with their (internet) peers?
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Where at least one Dutch clinician is at, believing CBT and the like can cure the illness.
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Authors' reply said:
We feel that it would be over-interpreting the data if we stated that internet use could mean that they would not want to give up their identity, as this is not something that participants discussed.
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The authors elaborate on the advantages of the internet but they could elaborate more on the possible disadvantages by giving examples of misleading or inaccurate medical information and their possible deteriorate effect. Could it be a disadvantage that CFS/ME adolescents won’t give up their diagnosis and want to continue being a patient with CFS/ME, identifying themselves with their (internet) peers?
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Wow, that's highly speculative and a strange thing to suggest given the nature of the study.
 
I thought seeking help online was a big no-no for ME sufferers, they should be dissuaded from googling ME and joining online support groups at all costs?

Now that Crawley's pushing FITNET, suddenly we have "research" from her (9 participants, usual spin) showing that the internet is suddenly a great thing for ME.

BPS crew using "research" to advertise their latest money-spinner. Excuse me for barely raising an eyebrow.
 
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