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Comparison of CFS/ME with other disorders: an observational study (Knudsen et al., 2012)

Dolphin

Senior Member
Messages
17,567
Free full text: http://shortreports.rsmjournals.com/content/3/5/32.full

Comparison of chronic fatigue syndrome/myalgic encephalopathy with other disorders: an observational study.


JRSM Short Rep. 2012 May;3(5):32. doi: 10.1258/shorts.2011.011167. Epub 2012 May 21.

Knudsen A, Lervik L, Harvey S, Løvvik C, Omenås A, Mykletun A.

Source
Department of Health Promotion and Development, Faculty of Psychology, University of Bergen , Bergen , Norway.

Abstract*

OBJECTIVES:

To examine the level of activity in online discussion forums for chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) compared to other disorders.

We hypothesized the level of activity to be higher in CFS/ME online discussion forums.

DESIGN:

Observational study

SETTING:

Norway, which has more than 80% household coverage in internet access, September 2009

PARTICIPANTS:

Twelve Norwegian disorder-related online discussion forums

MAIN OUTCOME MEASURES:

Number of registered users and number of posted messages on each discussion forum

RESULTS:

Two forums were targeted towards individuals with CFS/ME.

These forums had the highest number of registered users per estimated 1,000 cases in the population (50.5 per 1,000 and 29.7 per 1,000), followed by a site for drug dependency (5.4 per 1,000).

Counting the number of posted messages per 1,000 cases gave similar indications of high online activity in the CFS/ME discussion forums.

CONCLUSIONS:

CFS/ME online forums had more than ten times the relative activity of any other disorder or condition related forum.

This high level of activity may have multiple explanations. Individuals suffering from a stigmatized condition of unknown aetiology may use the internet to look for explanations of symptoms or to seek out alternative treatments.

Internet forum activity may also be reinforced by the creation of in-group identity and pre-morbid personality traits.

More knowledge on the type and quality of information provided in online forums is urgently needed.

PMID: 22666529 [PubMed] PMCID: PMC3365790

*I gave each sentence its own paragraph.

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3 comments/e-letters have now been posted: http://shortreports.rsmjournals.com/content/3/5/32/reply#rsmshorts_el_220
 
Messages
15,786
This high level of activity may have multiple explanations. Individuals suffering from a stigmatized condition of unknown aetiology may use the internet to look for explanations of symptoms or to seek out alternative treatments.

Internet forum activity may also be reinforced by the creation of in-group identity and pre-morbid personality traits.

Screw stigma and personality. When in constant pain with no useful standard treatments to start with, people are just desperate to find a way to make the pain stop. Most of us come here due to ignorant GPs and a lack of accessible specialists.
 

user9876

Senior Member
Messages
4,556
I did some work a while ago looking at some forums and found registered users quite a poor characterisation. I looked at three different forums and they had a high rate of members who registered and never revisited or dropped out after a couple of days.
 
Messages
15,786
I did some work a while ago looking at some forums and found registered users quite a poor characterisation. I looked at three different forums and they had a high rate of members who registered and never revisited or dropped out after a couple of days.

They also looked at the number of posts per patient population.
 

user9876

Senior Member
Messages
4,556
They also looked at the number of posts per patient population.
The forums I looked at were not medical ones, but ones associated with hacking and the illegal sale of credit cards. I did recon that a majority of the posts were by a relatively a small group of people. Someone did a further analysis so I will try to dig that up but we were looking at trying to characterise the interconnectedness of the community.

I remember reading this paper (I think) a while ago. I will go through it again. One thought was that the compare ME with people who can be quite physically active and also where there are likely to be physical support groups for say drug addiction. I would have expected ME forums to have quite a high volume given the number of people who are house bound. A forum is a good way of connecting with people yet controlling the amount of energy usage (connect when you want). Activity could be compared across all forms of support groups. Or it would be interesting to compare activity with lifestyle or hobby forums such as say a football forum which seem very active or an american scrapbook forum.

I don't think they try to code what the actual activity is. How much is social, how much is discussing research, how much is discussing symptoms. Even here I would expect the fluctuating nature of ME along with a wide range of symptoms would lead to more discussion than many other conditions.

Its very hard to see how they come to the conclusions they do from what they measure. There set of potential explanations is also very limited based on their predujice
 

justy

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5,524
Location
U.K
As i dont have the energy right now to read the full paper, i wonder if anyone who has could tell me what other chronic illnesses PWME were compared with? i notice in the comments discussion about MS (not used as a comparison group) and the 3 rd comment in the letters sections does indeed bring out the possibility that M.E patients, like many with MS are a very ill group, mnay of whom are unable to work or even leave the house and who have little or no socail and medical support. If that was comapred to say a diabetes forum, well that is a chronic illness that has treatments, can be controlled and the vast majority of diabetics will be able to lead relaitvely normal lives (work, exercise, social etc)

Justy.
 

wdb

Senior Member
Messages
1,392
Location
London
Individuals suffering from CFS/ME appear to be much more active in their use of online discussion forums than sufferers of other somatic or mental health conditions.

Wow seems like they have already decided the nature of the condition.

CFS/ME, fibromyalgia, whiplash, electromagnetic hypersensitivity, diabetes, cancer, anxiety, depression, drugs and alcohol dependency, neck and back conditions and chronic pain

Yeah that seems like a comprehensive list of all documented medical conditions, it's not like could have cherry picked it to exclude conditions like MS, which they acknowledge was found in another study to have even higher online forum usage than ME, because that wouldn't fit with their hypothesis.
 

Enid

Senior Member
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3,309
Location
UK
A thousand times yes - don't know why people dabble in this superficial "observation" as real medical science unravels ME. as the illness it is.

Why do we even consider this claptrap - observed in A & E (between passings out) 3 docs and a psycho advised - well bully for them - collapsed in front of them - unable, ignorant docters.
 

Dolphin

Senior Member
Messages
17,567
Individuals suffering from CFS/ME appear to be much more active in their use of online discussion forums than sufferers of other somatic or mental health conditions.

Wow seems like they have already decided the nature of the condition.
This is a common misconception. Somatic = "of the body", so they aren't taking a stance with that statement.
 

Enid

Senior Member
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3,309
Location
UK
What is this thing somatic (or whatever) - do you think it is possible to dream illness up - nonsense. I'm not "individuals" and could not care less about "observations" which in the medical profession led me astray - and this lot even worse.
 

Dolphin

Senior Member
Messages
17,567
What is this thing somatic (or whatever) - do you think it is possible to dream illness up - nonsense.
They are using "somatic" in the opposite sense. Multiple sclerosis, Cancer, etc. are somatic conditions in the sense they are using it.
 

Enid

Senior Member
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3,309
Location
UK
I am not interested in mumbo jumbo definitions - there is no such thing as somawhatever - now we are not going to progress the science already in place by giving any credence to things like this.
 

wdb

Senior Member
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1,392
Location
London
This is a common misconception. Somatic = "of the body", so they aren't taking a stance with that statement.

Ah yes, good catch, I was obviously thinking of somatoform. Well that is confusing having two similar terms which mean opposite things, I'll have to try and remember which is which :confused:
 

Dolphin

Senior Member
Messages
17,567
I am not interested in mumbo jumbo definitions - there is no such thing as somawhatever - now we are not going to progress the science already in place by giving any credence to things like this.
It is nothing to do with psychobabble, but I'm not going to waste any more of my time explaining it with you.
 
Messages
5,238
Location
Sofa, UK
I think Dolphin was trying to explain that "somatic" basically means the opposite of somatoform, and therefore the opposite of what you think it means, Enid. You don't seem to have accepted his explanation, so he's given up, but I'll have a go, with a reference:

http://en.wikipedia.org/wiki/Somatic

The term somatic (from the Greek σωματικός) means 'of the body' - relating to the body. In medicine, somatic illness is bodily, not mental, illness.

"Somatic" illness means "bodily" illness.

"Somatoform" illness means something that appears like a bodily illness, but is presumed to be imaginary/mental.

Several of us seem to have been confused by this terminology, and I must admit it wasn't completely clear to me until I looked it up a while ago, so there's no shame in that. So long as we can all see that Dolphin's explanation was right, hopefully we can all talk the same language now and realise that we are all in agreement.
 

Enid

Senior Member
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3,309
Location
UK
I think the attempt to define this is not part of ME - that is somebody else's problem not ours. We are into a very real illness, real pathologies, real discoveries so semantics of no concern. Anyone here an immunologist, virologist, gastroenterologist, neurologist. endocrinologist. I'm simply remarking this is soft science - (behaviourism).
 
Messages
445
Location
Georgia
I think "soft science" is too generous a term. It reminds me more of argumentative writing - they start out looking to prove a point, then find a way to frame the evidence to support that point. It really hasn't much to do with science at all.

I don't understand why you think there's anything wrong with this? The fact that our patients are the most active is a form of publicity. Some practioners are going to read this and think-- hmm, what if there is something to all the CFS stuff after all. And that will indeed happen. I don't believe most docs take marching orders from our critics. Any kind of publicity is good. For us.

Because, as far as I can tell, many doctors would rather just forget we exist. Reminding people-- that, oh yes, we are definitely serious about this condition-- and we don't run any one-post-per-day vapid forums. The squeaky wheel gets the grease. Calling us personality disordered, "pre-morbid" (whatever that means) just throws gasoline on the fire. Every sneering, denigrating journal article or comment seems to bring a number of medical supporters to our side. So I say-- bring it on!
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
"sufferers of other somatic or mental health conditions." I do have some concern over this, though for other reasons than discussed so far. They could have just said "other health conditions" and leave it at that. Instead they used "somatic" which is easily misinterpreted, and "mental" which does include somatoform disorders. Its clumsy language. I am however more sensitized to such language as I am looking for examples of this kind of thing.