Discussion in 'Latest ME/CFS Research' started by Dolphin, Aug 11, 2014.
One of the authors, Vegard Bruun Wylle, is from the biopsychosocial school of thought on the illness.
The introduction reflects this with the literature review pretty all about the negative coping styles adult patients supposedly have. However, the paper improves in the results and discussion section which more of it being impartial, or even against the BPS, although they sometimes do slip into points I don't accept are justified/are speculative.
The only part from the introduction I found of much interest:
With the former, one would wonder then how much focus there really should be on changing causal attributions. The second underlined bit highlights how patients don't necessarily rest/take to the bed when first ill as claimed (the symptoms are claimed to be due to deconditioning, but in my experience, plenty of people aren't particularly inactive initially).
Here's an example from the results of how patients did continue to be active:
Some quotes from the results section:
I'm not convinced of the authors' interpretation of this. I think a very plausible alternative explanation is that the girl was doing too much and she has now reached a sustainable level where her symptoms aren't flaring.
I thought this was interesting:
I thought it was interesting that believing in a physical cause didn't appear to be negative.
I wouldn't be surprised if adults were that different if they were asked at the time of diagnosis, like this group.
Again, I wouldn't be surprised if adults were that different if they were asked at the time of diagnosis, like this group, and if other researchers had been fairer in their presentation of adult patients.
I'm not convinced by the last sentence in this.
These sorts of views are different from the typical CBT/biopsychosocial school of thought viewpoint.
That's it from me.
1) I have lost most of the capacity that made me, "me"
I cannot physically or mentally cope with love affairs, please note I said "love" not just "sex" much as latter is great fun, the former's what I've always needed and given. Not having a lass and kids is heart-breaking.
I can no longer do weight training or martial arts (latter was necessary because I live in what was once one of the most violent areas in Europe, but found the philosophy of it best of all)
I cannot go fishing, not just physically, I know it would make me very unwell to even try, I cannot afford to get upset not being able to do something I've loved since a little kid. Frankly though after suffering this, and even back when I w as well I never liked harming the wee fishies, I wouldn't want to fish anyway, seen enough suffering.
It has wrecked my sense of empathy and spirituality, I find that particularly heinous
It has wrecked my creative capacity. Sad as it may seem to some folks I adore Dungeons & Dragons and loved creating stories and games for it and was published etc, folks should try it, it's like improv theatre and takes a great deal of ability to run well I'm happy being a geek. Likewise it's wrecked my writing and art. hard to explain how/why it has interfered but many of you will understand.
I know how much physical injuries etc should hurt, I know now they hurt more than before by a good margin, after experience with other ailments I'm damn sure M.E. is causing the nervous system to over react, NOT psychology! common problem from diabetes, meningitis and other such that inflame the nervous system. Ic an speak from experience, not a qualification which has sod all to do with reality.
Despite a lot of rather atrocious or extreme crap, I was not a depressive person. I fought illnesses or meditated.
was not dumbly macho, but for a man to lose his virility in many senses of the word is humiliating as hell and shameful.
My lower legs are numb, so not just balance and weakness problems but that as well makes wlaking extremely difficult, similar crap in hands. And this has al come about in months and new thing appeared over past couple of weeks, affected areas if I touch cold things, it feels wet. Sigh. that isn't hysteria, it's some form of problem with the nervous system.
And last, but not least, now I am suffering something which if I'm lucky maybe a from of hernia, if I'm unlucky its prostate cancer.
last two added together is scary.
And I really don't like being around doctors and hospitals
2) Thus to have all that and then some f'ing TOSSPOT BASTARD as usual dismiss it as "illness belief" is like blaming a rape victim for wearing "enticing clothing" or other such PISH!
apologies to original poster and those who bring such things up and debate well
I appreciate you taking time to dissect the ludicrous bullshit of these ass-wanking, inbred, class-ridden, inhumane, merciless reprobates who suck vital time and resources from the teet of Asclepius
I alas don't have your fortitude, patience or good manners and so prefer to call a spade a spade, or, "nincompoop bastard" in this case
oh yeah I should have added to the list: the general crap that M.E. does but one I so used to it one doesn't consider ache pains , headaches, feeling sick as a dog and getting knackered walking like a zombie to shop round the corner, to be "normal"
Frankly, I feel like I woke up in someone else's nightmare, can I please wake up now, pretty please with a cherry on top?
Good comments Dolphin. I would agree with many of the participants. Psychological explanations are part of the problem. They lead to an unsupportive environment (family and doctors), unrealistic expectations, problem solving strategies that are harmful rather than helpful, and generally just lots of blame and despair. Leaving the psychological explanations and the mindset that comes with it behind has been very constructive for me!
In my case, I had two doctors in the family who both favoured psychological interpretations and discouraged actual medical investigation, which is a shame because it could have been very helpful to run proper diagnostic tests early on (my illness has clearly evolved over the years)
I became ill in my teens and at first tried to solve the problem exactly in the same way as some others here: simply trying to maintain normal activity levels. Back then I had periods of exhaustion alternating with almost normal activity. Gradually I sacrificed more and more, despite this, the periods of exhaustion became more frequent, longer, and the periods of relatively normal activity became shorter. Various psychotherapy did nothing but create false expectations, wasting more of my time.
While a biomedical approach hasn't done much to improve my physical health which slowly continues to deteriorate, I feel that it is much more valuable than the previous approach and actually the only sensible approach.
"Sad as it may seem to some folks I adore Dungeons & Dragons"
Why would that be sad? When I was more able we played D&D as a family.
I was either a human cleric or a halfling rogue generally.
We had a great time.
Yes, I think this image is quite insightfull.
Yes psychological explaination are not empowering, they do not lead someone to take responsabilities, they just bring guilt, that leads to more psychological dispair.
Lots of the doctors I met talked of iatrogenic factors to explain my state, but I'd be happy to see a study of the iatrogenic factors in psychological unwellness in people with so-called "madically unexplained symptoms".
well, being a "geek" here was...a struggle, lol.
most folk are nice but the crap that went on, sigh
I am a geek, but I am a SUPER geek
yeah it's great to play with the folk you love! played with couple of my cousins and several of our friends
was planning a game because 5th ed was out and not playing for years was getting to me
but...no, I can't cope with travel and playing, and our pal has OCD so he can't come to my home (as I have a dog)
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