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

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jan 16, 2013.

  1. Dolphin

    Dolphin Senior Member

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    Free full text: http://shortreports.rsmjournals.com/content/3/5/32.full

    *I gave each sentence its own paragraph.

    -----
    3 comments/e-letters have now been posted: http://shortreports.rsmjournals.com/content/3/5/32/reply#rsmshorts_el_220
     
  2. Valentijn

    Valentijn Activity Level: 3

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    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.
     
    Shell, beaverfury, SOC and 2 others like this.
  3. user9876

    user9876 Senior Member

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    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.
     
    justy likes this.
  4. Valentijn

    Valentijn Activity Level: 3

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    They also looked at the number of posts per patient population.
     
  5. user9876

    user9876 Senior Member

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    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
     
    Dolphin and Valentijn like this.
  6. justy

    justy Senior Member

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    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.
     
  7. wdb

    wdb Admin

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

    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.
     
    WillowJ, Min, alex3619 and 2 others like this.
  8. Enid

    Enid Senior Member

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    Isn't this sort of study called soft science ?
     
  9. Valentijn

    Valentijn Activity Level: 3

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    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.
     
    Bob, alex3619, Purple and 2 others like this.
  10. Enid

    Enid Senior Member

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    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.
     
  11. Dolphin

    Dolphin Senior Member

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    This is a common misconception. Somatic = "of the body", so they aren't taking a stance with that statement.
     
    WillowJ and alex3619 like this.
  12. Enid

    Enid Senior Member

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    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.
     
  13. Dolphin

    Dolphin Senior Member

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    They are using "somatic" in the opposite sense. Multiple sclerosis, Cancer, etc. are somatic conditions in the sense they are using it.
     
  14. Enid

    Enid Senior Member

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    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.
     
  15. wdb

    wdb Admin

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    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:
     
  16. Dolphin

    Dolphin Senior Member

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    It is nothing to do with psychobabble, but I'm not going to waste any more of my time explaining it with you.
     
  17. Mark

    Mark Acting CEO

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    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

    "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.
     
    SickOfSickness, SOC, Sea and 2 others like this.
  18. Enid

    Enid Senior Member

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    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).
     
  19. MishMash

    MishMash *****

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    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!
     
  20. alex3619

    alex3619 Senior Member

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    "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.
     
    WillowJ, SickOfSickness and Valentijn like this.

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