More thoughts on the scientific method
 

Please excuse my jumping in here, respectfully Vicc, and Tayla, I think it is more that they are nerves misbehaving - not performing normally in type I and we categorically don't know why. There is no black & white with any biological system.

I comment herein respectfully and this is probably a case of semantics and being pedantic on my part. I would think we are in the realms of hypotheses as in "a supposition made as a basis for reasoning, without assumption of its truth, or as a starting point for investigation" .....Concise Oxford Dictionary.....and to quote the dictionary again

" Theory: Supposition explaining something especially one based on principles independent of the phenomena etc.

Unfortunately, I think we are still at the hypothesis stage despite being aware of this incidious thing since the American Civil War. I fear CRPS has been studied in such small groups and work done on medical practice stats and opinion rather than collective studies that it is limited in its application of certainty. These doctors mean well but they don't have access to large numbers of patient and I might add that the researchers also mean well but they just don't have the numbers...as in size of sample. They are often using numbers like 50 participants.....very small samples. It is that fundamental.

So we come to the expectation of the impossible .....at this stage.....a theory is able to be proven with a degree of certainty whereas a null hypothesis can be disproved with a degree of certainty so an hypothesis can be confirmed with a reasonable statistical degree of certainty but the numbers don't appear to exist collectively.

As we don't KNOW all of the roles of the nervous system jigsaw puzzle and its interaction with the bodies’ systems this becomes quite curly.
In fact, that might get us as a group heading somewhere whereby we can try to influence the researchers were we to do it tactically on how we are most affected.

It's like the null hypothesis in stats. You say the opposite to that which you wish to prove & then prove it is wrong.....then you know the hypothesis proper (the theory) is correct within defined limits of certainty.
I'm not well enough by any stretch of the imagination to try to collate a meta-analysis along these lines.

The hypothesis that is out there that appears to give the most consistent little snippets of relief is that it is related to the nervous system. It must certainly include the nervous system as pain receptors are involved and certainly the higher order operants of the Higher order control of Autonomic functions.

I also think it curious that if nociceptive pain is relieved by opioids and the balance of pain source for many patients is nociceptive then they get a fantastic improvement in quality of life. I think there seems to be some confusion (I'm not sure that is the right word) with the Gate Control Theory and SCS has given such a degree of relief to so many patients - sadly, it didn't help me and yet opioids delivered intrathecally gives tremendous relief for some.

Those meds that quieten the nervous system whether they be anti-epileptics, tricyclic antidepressants have been a boon to many. Again...not I.

I am merely suggesting that if we were to, as patients, suggest the major irritants (stimulant) and the responses they cause us in large numbers we might actually get somewhere and work with the researchers to crack this nut.

The British and the Canadian RSD groups are great too.
We are a big group but if data could be combined worldwide before research is done rather than retrospectively reviewing small studies, a positive direction might be found for us all.

Very best wishes
Auberon

Vicc,

I find it interesting to think that you would expect me to have any further dialogue with you after your PM to me and your post on another forum
Based on the information you have supplied I do not agree with your hypothesis regarding IRI being RSD and you don't agree with mine.
Let's agree to disagree and at least leave our integrity intact.
I respectfully ask you to not mention me in any more of your posts and I will afford you the same courtesy.

Tayla

Hi Auberon,


A great thought provoking post.
I agree, there are NO definites just as there are no two RSD/CRPS patients alike.
I hope you are as well as you can be.
Cheers Tayla:hug:

It ain't that easy, Tayla,

On Steff's thread PN Board suggested I post here, I asked you to stop misquoting me and stop falsely summarizing my views.

On the thread KimmyDawn created in order to allow Steff's thread to focus on her questions: Discussion of Vicc's hypothesis on RSD, I again asked you to stop misquoting me and falsely summarizing my views.

On this thread I asked you to stop misquoting me and falsely summarizing my views.

Now that I suspect the mods have warned you to stop misquoting me and falsely summarizing my views, you suddenly talk about leaving our integrity intact? You want to leave the impression that my integrity is in question?

I respectfully ask you to not mention me in any more of your posts. Tayla, if you can provide a single example of my mentioning your name on any thread in which you weren't misquoting me and falsely summarizing my views. I will promise to never mention your name in any of my posts that don't directly reply to your words.

I find it interesting to think that you would expect me to have any further dialogue with you after your PM to me and your post on BT.

I'm not sure whether it's a violation of the TOS to discuss PMs, but since you bring it up, my one-word reply to your assurances that you weren't deliberately misquoting me was, I felt, appropriate.

I did not mention your name in my post at BT, but I certainly talked about your behavior. I joined in a discussion there about being banned from NT, and I talked about my reservations about how deletions and bannings take place here. It is againt the TOS here to discuss those things, so I did it where such discussions are permitted.

Based on the information you have supplied I do not agree with your hypothesis regarding IRI being RSD and you don't agree with mine. I know you disagree with mine, but I honestly don't know what yours are. I asked you to clarify them in my last post, but you apparently choose not to.

If you want to end what has been going on throughout three different threads, you will have to accept that this time I will have the last word. Reply to this and I will reply to your reply. You can avoid what could become an endless stream of replies by answering the last question on my last post.

If you do that, my soul will be at rest. Otherwise, if you want this to end, allow it to end now; without reply...Vic

Enough is enough with this issue, y'all.

What started as a debate has turned into a personal "I'm gonna prove my point and have the last word doing it" sorta thing, splintering into various threads and hijacking other discussions. That would be fine if this forum were set up for that. It would be fine in PM. It would be fine if it involved just the few engaging.

HOWEVER...

This forum is for support...for anyone and everyone who needs it. When an issue becomes a personal quest for being right, flames thrown in, etc., it kinda ruins it for everyone, yes?

Because there are several members of this forum who read, lurk, respond, etc. for its mission, I'm requiring that the discussion on this end here. If you want to continue to prove points, attack, etc., take it to PM where those that don't want to see it can ignore effectively, and those that do want to continue can without it affecting others.

From this point it's not on the administration if posts are removed, it's on the member involved. It's easy to blame the administration when its worked non-stop, ignoring other parts of the community and their personal lives to watch a debate that's turned into a personal argument of purpose to put MUCH time into something where the members involved work with it little and continue.

A debate is not a debate if there aren't opposing sides making a stand, nor is an argument...put the member on ignore or simply don't respond. If you feel you must, do so in PM...to be in accordance with the guidelines, but more for your fellow members here.

Regardless of why one chooses to do it, it needs to be done and the disruption in this forum needs to end...for the success of this forum but also for the comfort and care for your fellow members.

Again, any post continuing this personal public argument will be removed for the whole of the membership, and yes, the administration can be blamed...blamed for caring for the whole of this forum, its members and this community.

I appreciate the care and passion of each and every person, and that's one reason the debate continued even after personal flames. However, there comes a point when a personal argument/debate becomes disruptive to those around it. This is that point. The members involved need to "lay it down" and move forward. If they can't, the administration will aid in that...again, for the many that attempt to use the forums for its mission.

KD

A Big Amen Joan

a slightly different take on this one
 

What I find is so interesting is how the same patterns repeat from thread to thread. See, e.g. http://neurotalk.psychcentral.com/sh...ghlight=Deluca

Basically it goes something like this, (1) thesis, (2) antithesis, (3) please show me the proof for your thesis/antithesis (maybe even a full text article if you've got one available), followed, almost invariably by (4-A) how dare you misquote me or (4-B) you're using an unfair argument, as opposed to (4-C) simply providing the requested backup information.

I feel that if members could simply back up there assertions with the wealth of information out there - and for those who need a little refresher course check out Molecular Biology Made Simple and Fun, D.P. Clark and L.D. Russell (Cache River Press, 2000) or Clinical Physiology Made Ridiculously Simple, Stephen Goldberg, M.D., (MedMaster, Inc. 2004) - we could all move a little more expeditiously from thesis to antithesis to synthesis.

There you have it, Dialectical Materialism in daily life and practice.

Mike

I think you make a good point for possibly all of us to take notice of, Mike. What's worked historically, and what hasn't? View that objectively and make attempts to change what we don't like/tolerate...knowing we can't control anyone but self. If we acknowledge that we can't make others hear us, understand us, etc., if they can't/won't, it's easier to lay something down.

So, in the future it might be good to work up to the, "I hear what you're suggesting. Please show me how you came to that conclusion." That might be a good point to analyze based on the responder's choices.

If they give more to work with, move forward. If upset starts, there's nothing more you can gain because no more information has been given, etc., then maybe it's a good thing just to move on from it. It's like that in almost any conversation. It does take two.

Another option might be to *with respect*, agree to disagree...to say, "I respect what you're saying even though I might not understand it all, but based on what I do understand...I disagree. We can agree to disagree."

Also, it's OK for others to disagree! We're all very individual in our lives and illnesses. Having someone disagree with us, then explain why, can really help in gaining expanding understanding and knowledge. We still may disagree at the end of the day, but it should all be OK. Saying, "I disagree" is NOT a bad thing...not at all...when it's said with respect.

From there, it can be laid down knowing that all was done that could be, and moving on is easier, I think...remembering that a debate or argument has to have *at least* two sides...

Just my two cents...

I think it's ok to continue to discuss how communication can be better (as we are now), but want to remind those replying that this continued discussion is for that and not to blame others, flame, make stands, pointing out another's past words or actions, etc...in essence continuing the argument.

Thanks!

KD

Hi Kimmy,

I pretty much agree with your first post, and am completely willing to see the "he said..they said" thing die. And my bestest RSD friend for years and years is asking me not to make what just happened "my hill".

I imagine you have been made aware of my posts on another forum, about my hill, and even if you aren't, I made it pretty clear what I was contemplating.

I value my bestest friend's advice, and so I have not taken any irreversable step.

I'm not quite sure I understand your second post. Your reply to Mike.

He wrote a reply that doesn't make any sense at all, and it was clearly intended to prove that when I can't find facts to support my view in a debate, I resort to accusations.

If your second post means that I am not to be allowed to talk about ALL of the flaws in his presentation, this is probably my hill after all.

I'll wait for your reply, telling me whether or not I am allowed to offer an alternative to what Mike wrote. After a certain period of time, I'll assume you don't feel the need to state the obvious, that everyone is allowed to debate ideas, and then I'll post my reply...Vic

Because the 60's happen to be the time period most of my ideas were formed I am of the "make love not war" say what you want I will defend your right even if I disagree!! :D I have read with interest everything that anyone posts, took what applied to me, and left the rest. I was taught when I did not understand something, to let it go until such a time as I felt it was important enough to study on my own and see if it made any better sense to me. I have done that here and was surprised at what I learned on my own, but using others research. Because we are all unique we react to RSD according to not only how wide spread the RSD is, but what other health issues are going on within each of us. Some people can get by without many meds, others need a handful to make it through the day. I can walk, but not hike like I use to, but have limited use of my hand:( Some have limited use of their whole body:(:(:(, but we each have something of important to share with others. I look forward to reading everyones post each day, some days I cheer-like when Allen got his much deserved SS and other days I offer up prayers for those not having a good day. I learned it takes courage to go on a long trip, but that the trip is worth it and understand that sometimes we have to pay for playing.

I have not been posting as I had skin cancer on my face that was removed, but the Dr. wanted me to do a topical cream for any remaining cancer cells, even the drug company that makes it said not to use it if you have some other types of health issues:eek:. Just removing the area of cancer,it
was on my cheek bone by my eye ,set off my RSD with my head and eye burning and PAIN. So I have been searching for a better answer, for me anyway, of treatment.

As we said in the 60's PEACE :hug:Carose