Dutch article about people homebound with CFS

Frank

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Listen up Maarten. This house has no strict rules, but we do try to keep things understandable and reasonable for the majority of people. An good objective parameter for this is the fluctuation of traffic on this site.

Altough i agree with you on the subject of miracle healing, i don't necessarily put it out on the forums into long philosophical posts. I prefer to discuss these issues with the people involved trough pm or directly via chat. It's my goal to try and make this place as pleasurable as possible for those who are struck the hardest by this disease. So i'm asking you politely to try and keep your posts as short as possible and also to not use the French language any longer. (English is the language we use on this forum). If you don't trust us and you're worried about your posts being changed, you are always free to stop posting or to ask one of the site leaders for the removal of all of your previous posts. You can also contact different site leaders for other issues. You can find us at http://www.forums.aboutmecfs.org/showgroups.php . I thank you.
 

Cort

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This is a moderated Forum. It sounds like a bit more careful than Marteenz is on his site. That's just the way we are. We don't troll around looking for negative posts -generally we're alerted by someone and that's how a moderator gets involved. It is a very open forum except that we don't want personal slights to mushroom as they can on the internet; we basically want to keep the focus on the subject rather than personalities.

Here is MY rule in this respect for me and yoiu better respect it: If you feel fit to decide what should be read on this forum, you may delete my posts, if they don't fit your prejudices about what is politically correct on this forum and not, that you style "acceptable", because that sounds more anti-septic.
This is not accurate; we don't delete posts on 'political' grounds; we delete sections of posts - in rare occasions - when individuals on the forums are personally attacked. We're not worried about political correctness - we're worried about 'etiquette'!

Also being a fairminded man: Do not delude yourself about your capacity to understand me. I am too different, and from a too different background. And yes, it works both ways: I too cannot fully comprehend you.)

Then: I accept and appreciate you want to help the forum and persons with ME, and so do I -(I plead guilty, and am an aristocrat. You would be, with my genes and life. As you see, I don't blame you, i.a. because I wallow in arrogant self-respect.)
:)

I certainly appreciate Maarten's difference. I do not want this to mushroom out of control - if we can all just calm down a bit I think this will work out.

Things like this

"I *really* wish you well Angela, and I don't mind that we think rather differently about philosophy, but IF we are to discuss I go for the truth by any stylistical means, and I don't think we are equals in the respects of philosophy, logic or written argument."
of course, are only going to inflame people.

The bottom line is that Jody was responding to requests that the conversation had gotten out of hand - and it was getting out of hand. She was trying to get the conversation back on track - and it needed to get back on track.
 

Mark

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It's about people, not logic

This sort of confession to weakness...

I *really* wish you well Angela, and I don't mind that we think rather differently about philosophy, but IF we are to discuss I go for the truth by any stylistical means, and I don't think we are equals in the respects of philosophy, logic or written argument.

of course, is only going to inflame people.
Well, that is the literal honest truth, as I see it, also said fairly, I think.
OK. Been there. Fair enough to confess this in the right context to the right person. Typically in the context of asking for help with it. A very tough problem for people like you and me. ML is a cinch by comparison!

OK. Then you need to change some wrong beliefs, beliefs unconnected to logic. If you find it hard getting started, try pretending - method acting if you like - that you believe something different. Just imagine it. Dead easy. Only as a temporary thing, you can change back after if you like.

Truth. Yes, and honesty. I accept that, that is quite obvious about you Maarten. Very high intelligence also is undeniable, of a certain type. Capable of great sensitivity, actually.

Gaps in other areas though, perhaps? Certain experiences lacking? I only say that because I too learned mathematical logic, artificial intelligence, and Godel and so forth, but I value at least as highly the other half of what I learned, from experience.

For example, as a youth at university I was extremely arrogant and forthright, I admit I was contemptuous of many of those around me. I have paused as I write because I am thinking back on the error of my ways and I am both ashamed and amused by my childishness at those times. Many stories are springing to mind, many of them carrying with them "God! (who?!) How different my life might have been if I'd never said that to her! Who would have thought we'd still be in touch 20 years later, after I'd learned how wrong I was, after she had steadily risen in my esteem as I realised that all the strong traits I was contemptuous of actually reflected her incredible unique strength, an individual trait I came to admire once I had realised what was important.

I suppose I only learned from the experience of turning down the masters in ML, leaving the safety and security of the ivory tower and going off into the real world to learn something different. One thing I learned more sharply was that if you go round upsetting people, you hurt yourself. In the real world, a crack in the mouth often offends even more, as I discovered; I couldn't behave on the street as I did at university, because if I did, then if there were any people around me at all, they would not be giving me an easy time of it. Nothing to do with logic, and arguments, I'm not talking about squares here, I'm talking about real people. Far superior breed: authentic, and all of us living together in hardship and sharing everything we had, pulling together, getting through life as a supportive unit made up of Free individuals. So much more free than their masters! Big joke!

Simple solutions. The difficulty of apologising when not in the wrong. The difficulty of managing to do that illogical act. Then the startling discovery after observing the consequences after managing to learn to do it that what happened proved (not be reasoning but by events) that I HAD been in the wrong after all! Despite being right! Simple rules, simple courtesies. So easy. Based on respect for humanity, for humans. Joy to discover in the process that I was one too, after all. Learning that comparison between people is not measured by comparing on one dimension only, of one's own choosing. Learning about the other qualities, learning which are the more important, helpful, valuable. Proving correct strategies through happiness and harmony of people in events and situations, not through logic. Being able to do both, and not see a contradiction. Lessons from life not books.

Sorry, that's all rather patronising. Really hate to be patronising. Struggling to find any another honest response. I think all that's why I don't tend to have such problems as this very often, but in the end it's not about that, it's just a simple wrong thing, an error.

"I don't think we are equals in the respects of philosophy, logic or written argument."

Just a nasty thing to say. It is judged. Learn. Don't say this. You believe you are smarter than her in these respects, that's evident. I have no idea, I don't know whether I am smarter than you or not using the word the way you understand it, but you may be right. But surely everybody knows - I mean, every adult I know seems to have got it - that you just don't go around saying things like that. At least, not in the real world do you get credibility by telling people you're better than them (don't come back on that by arguing details about better vs "in the respects of", that's not the point), the person concerned will have feelings hurt on some level whoever they are, and the audience will certainly conclude that you are not superior, otherwise why would you need to say it? Humility. Respected.

What you say and what you believe are related, flexible and controllable. Say it often enough and you begin to believe it. Hope this helps.

I saw none of the backchat so I don't know what was said to wind you up, but whatever it was, big deep breaths help with that! Don't think I don't understand all that, ignorant women bosses running departments of men who know how to do computers, making it very hard to achieve anything at all. It's a temporary confusion because there IS another side to that story, but we certainly haven't got that one right at the moment. Have faith, we will figure out the next step forward.

I'm sorry, it's not a logical argument, just my impression. Hope that's enough.
 
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Hi Mark

I should very quickly say that Maarten and I have written to each other privately and talked through our positions, and I think we have both emerged mutually respectful and understanding of each other's work, and that we are perhaps not so different in our understandings of advocacy and even other issues. Maarten has been very kind to me. We're ok : )
 

Mark

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Wonderful !

:D

Delighted you have made up, that's great news to hear, makes it all worthwhile.

I realised all along that my post was ludicrous hence I titled it in draft "Meaningless Statement", so no need whatsoever to point out the more ridiculous aspects to me! :D

It seemed necessary, nevertheless, I don't know why exactly. Perhaps less enlightened souls observing the fracas were the ones who needed all that information. Perhaps it was unnecessary and I was writing the wrong post; I would have rather been discussing meaningless statements with Maarten. :D

Anyway: all is well etc...:D

Mark
 

Dolphin

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Can someone find the full-text of this for me? It's important stuff as so little is studied about homebound CFS but I'm not sure about the authors. (Any Dutch posters?) Thanks.

Psychiatry Res. 2010 Mar 4. [Epub ahead of print]

Being homebound with chronic fatigue syndrome: A multidimensional comparison with outpatients.
Wiborg JF, van der Werf S, Prins JB, Bleijenberg G.

Expert Centre Chronic Fatigue, Radboud University Nijmegen, Medical Centre, PO Box 9101, 6500 HB Nijmegen, The Netherlands.

Many patients with chronic fatigue syndrome (CFS) seem to experience periods in which they are homebound due to their symptomatology. Despite a growing body of research about CFS, little is known about patients who no longer feel able to leave their homes. The purpose of the present study was to examine whether homebound patients differ from other CFS patients on illness-specific characteristics. Besides experiencing more impairment in daily functioning than participants of an outpatient intervention study, homebound patients were characterised by extremely high levels of daily fatigue, predominant somatic attributions, and pervasively passive activity patterns. The course of symptomatology was similarly stable in both groups. Our findings suggest that homebound patients form a distinct subgroup of CFS patients who might profit from a treatment approach that is tailored to their specific needs. The exploratory nature of this first systematic investigation of homebound CFS patients is stressed, and suggestions for future research are made. Copyright 2010 Elsevier Ltd. All rights reserved.

PMID: 20207012 [PubMed - as supplied by publisher]
The full text can be seen in Jan-Frederic Wiborg's PhD thesis: http://dare.ubn.kun.nl/dspace/bitstream/2066/95111/1/95111.pdf .
Unfortunately, it's locked for printing and copying.