For me, it is the "proselytizing" aspect of posting on the forum (in this or any other thread) that weakens what may be good arguments. An objective presentation of either research, experience, or personal theory--without trying to "convert" others--goes a much greater distance for me.
I would guess that some members (who would actually be interested in a discussion of a certain topic) will dismiss it and no longer read the thread if the discussion becomes an attempt at persuasion, which can easily ruffle feathers.
That said
, here is a link to the Ehlers-Danlos Foundation's newsletter, "Loose Connections," for anyone who is interested.
Sushi
Hi Sushi,
I am not trying to convert anyone to have blind faith this theory.
If it seems this way to you it is because it seems to me that some people have entrenched ideas ....such that they do not want to even consider any other possiblity. If you like, a block against this idea, which, without testing it out first before refuting it, is not a rational way to approach an issue.
My point is this .. I spent many years thinking that my illness was caused by gluten intolerance or coeliac; so I studied up on all gluten-containing foods and avoided them. Then a specialist pointed out to me that I eat gluten only when I am out and think that makes me ill ... when in fact the real cause may be something else... the going out itself ... ie standing up for a long time, often slow walking such as in shopping centres etc.
Extensive gut testing proved that I was NOT in fact gluten intolerant.....Lot of time wasted on that !
(Testing involved eating all and only food supplied by a univeristy for 4 weeks with daliy breath tests and weakly stool tests sent overseas for microbial testing and examination, charting diet activity and wearing and actometer to record all activity etc etc . It DID show that I had IBS however.)
Since this Doc has pointed this out to me ....my initial raction was disbelief - too simple, I was too ill, everyone on the forums discussed other POSSIBLE causes but not that,,,, so it could not be right. That phase lasted several months , Then I began looking at it and observing the correlation and found that it could in fact be right. A year later I am pretty sure it is accurate for me.
A year is a long time to waste looking for a cause and a cure.
you say
An objective presentation of either research, experience, or personal theory--without trying to "convert" others--
is bettter for you
I am not trying to convert others
If there are many subtypes under ME they have not yet been delineated as far as I am aware ( as they have for MS for example, which has at least 4 quite different types) and this may be one of them or it may be EDS or it may be that EDS and ( some types of ) ME are the same thing. Or it may be there ia a lot of misdiagnosis......
I have presented my experience and observations as objectively as possible
I am asking others to look with an OPEN MIND to see if it could apply to them too.
Instead, some have replied, without looking at their symptoms or considering any possible correlation, saying that I must be wrong or misdiagnosed.
I do not care if it does not apply to anyone else, and if everyone replied and said, "I have considered what you say, watched and thought about it for some time now and decided it cannot apply to me",,,then that is perfectly fine. (I may have another suptype or another disease entirely. )
In fact the opposite occured , lots of people replied saying they had or their family had relevant symptoms or bendy joints etc etc, which gave me to think that there may be something in it worht invetigating further.
Sorry, lost my train of thought so will post this so I don't lose it a reply again soon.
Best,
Ally