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Old 02-04-2013, 05:25 PM
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fmichael fmichael is offline
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Join Date: Sep 2006
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fmichael fmichael is offline
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Join Date: Sep 2006
Location: California
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Originally Posted by Neurochic View Post
*admin edit* They are my opinions and comments in the same way as you make your comments here which people are free to agree or disagree with as they see fit. I stand by my comments.

With respect, I don't know where this idea has come from that people are only free to express opinions where they back them up with support. The vast, vast majority of opinions expressed on here are entirely unsupported even by annecdotal evidence. They are people's opinions, nothing more, nothing less. Annecdotal evidence is no better than opinion or speculation, thats why medical science wont rely on it for any decision making. This is supposed to be a forum where people can share their experiences and opinions and support one another, that is all. That is what most people do here. Even quoting medical articles and studies in responses is no guarantee of accuracy - it's always possible for people to miss contrary evidence or to miss more recent publications which reflect a different outcome.

*admin edit*

I have no desire to undermine the value of the totality of people's experiences as they contribute their valuable personal experiences to this forum but to believe that this means that the forum is leading the way in identifying scientific progress is worrying. The hypothesis that CRPS may have an autoimmune cause is a long standing one and I'm not sure how it could be thought that this forum (which has a constant and frequently changing group of posters) came up with this hypothesis before research scientists. The threads on TDcS are a very interesting collection of people's annecdotal experiences, but no more than that. They may well be useful to others, they may not. That technology has been in existence for over 30 years and has been tried by the medical profession to treat many conditions. accordingly, I'm sure lots of people have lots of annecdotal evidence for its efficacy and otherwise in a wide variety of conditions. That is not the same as a properly structured and run clinical trial.

If you have actually read any of my posts you will know that I am acutely bothered by 'facts'. You will see that evidence and facts are particularly important to me. I can't understand why you would suggest otherwise.

Your quotation from Wikipedia on warm blooded animals adds nothing to this and to provide it to me would suggest that you must believe I have rather limited understanding of this basic concept. *admin edit*

I'm sure you have lots of personal experience and knowledge of CRPS, clearly you regularly contribute the results of your searches for others to look at. It is possible for other people to have just as much knowledge but to communicate their opinions and knowledge differently. Your way isn't the "correct" one, nor is there anything on the forum that requires any poster to back up their opinions. This is not a medical advice site, it is for information and support.

*admin edit*
Neurochick -

*admin*

Specifically, I don't believe that my characterization *admin edit* was anything more than a statement of opinion oh my part that I believe to be well supported by the facts. I have been on this forum since it started in 2006, and have sparred mightily with some along the way. I certainly will never forget my long running "discussion" with Vicc over his assertion that RSD was "a classic ischemia-reperfusion injury (IRI)." See, e.g, Fact, fiction and RSD, Nov., 2006. But our discussions were always cordial, at least insofar far as I can recall. *admin edit*

*admin edit*

And for what it's worth, it was in recognition of the contributions you's made of lately in many of your posts - the discussion of GAD65 came first that I added the comment "Having said this, should anyone share with you published authority to the contrary, please let me know." I did so out of respect for your talents: but candidly without taking the time to read the read everything in the thread, just knowing that you and LIT LOVE had a difference of opinion on whether ice could ever be of value in the treatment of RSD/CRPS. So I was open to being persuaded to the contrary. I'm sorry if it didn't come across that way. And to that end, my last reverence to cold in warm blooded animals was by no means meant to be insulting either, just a recognition of the basic point that could triggers vasoconstriction, and if you want scores of free PMC articles on everything that physicians battling RSD/CRPS have tried to battle peripheral vasoconstriction, I would be happy to try and provide them but this one's probably the most intuitive accessable: Effect of tadalafil [Cialis] on blood flow, pain, and function in chronic cold complex regional pain syndrome: a randomized controlled trial, Groeneweg G, Huygen FJ, Niehof SP, Wesseldijk F, Bussmann JB, Schasfoort FC, Stronks DL, Zijlstra FJ, BMC Musculoskelet Disord. 2008 Oct 20;9:143.

And on the other side of the ledger, I would only add this from the Complex Regional Pain Syndrome: Treatment Guidelines, R. Norman Harden, MD, editor (2006), INTERDISCIPLINARY MANAGEMENT:
All PT must be executed within the bounds of the patients’ tolerance49 and never when the affected limb is insensate (such as after a block) or with CRPS Type II patients who present with pronounced hypoesthesia. Inappropriately aggressive PT can trigger extreme pain, edema, distress, and fatigue, and may in turn exacerbate the inflammation and sympathetic symptoms of CRPS; it is therefore to be avoided. Use of assistive or range of motion devices, prolonged application of ice, and inactivity may also aggravate CRPS. [Emphasis added.]

Note
49. Birklein F, Handwerker HO. Complex regional pain syndrome: how to resolve the complexity? Pain. 2001;94:1-6.
Then too, and in retrospect, I recognize that most people who have has CRPS for any length of time - myself included - have a certain amount of what may be termed "prefrontal disinhibition." See, e.g., Neuropsychological deficits associated with Complex Regional Pain Syndrome, Libon DJ, Schwartzman RJ, Eppig J et al, J Int Neuropsychol Soc. 2010 May;16(3):566-73; AND Wikipedia, Frontal lobe disorder:

Dysexecutive syndrome consists of a number of symptoms[7] which tend to occur together (hence it being described as a syndrome). Broadly speaking, these symptoms fall into three main categories; cognitive, emotional and behavioural. Although many of these symptoms regularly co-occur, it is common to encounter patients who have several, but not all of these symptoms. This is one reason why some researchers are beginning to argue that dysexecutive syndrome is not the best term to describe these various symptoms (see criticisms below). The fact that many of the dysexecutive syndrome symptoms can occur alone has led some researchers[8] to suggest that the symptoms should not be labelled as a "syndrome" as such. Some of the latest imaging research[9] on frontal cortex areas suggests that executive functions may be more discrete than was previously thought. The argument is that rather than damage to the frontal cortex areas causing dysexecutive functions in general, that damage to multiple frontal cortex areas that are close together (but responsible for different cognitive functions) can cause the various symptoms of dysexecutive syndrome.

The counterargument is that there is a central executive corresponding to areas within the frontal lobes which is responsible for much of the executive system and executive function in general, and that damage to this area causes dysexecutive syndrome.

Notes
7. Halligan P.W, Kischka U. & Marshall J.C. (2004) Handbook of Clinical Neuropsychology. Oxford University Press, 2004.
8. Stuss, D.T. & Alexander, M.P. (2007) Is there a Dysexecutive Syndrome? Philosophical transactions of the Royal Society of London. Series B, Biological Sciences, 362 (1481), 901-15.
9. Gilbert, S.J. & Burgess, P.W. (2008). Executive Function. Current Biology, Vol.18, No. 3, 110–114.
So I could have been more gentle in my criticism of you as well - certainly dropping the "angry-face" - and for that I apologize.

But on the issue of always being able to back up our view an a patient support forum, even if its simply something from our personal experience, as everything is in the end, there I stand my ground. And let me repeat, people coming on the forum, seeking advice, have the right to expect that - in some fashion - we will be able to articulate how we came to our views. (There is in fact one class of expressions on the forum to which this doesn't apply, and it's called a poll: see the icons at the bottom of the "Message" composer, it's the 5th one down in the 2nd column.) It's like the line from the late Daniel Patrick Moynihan, "Everyone is entitled to their own opinions, but not their own facts."

And here, I recognize the value of anecdotal experience quite highly. As I stated in a recent article in the RSDSA Review - wherein I say a word or two about the culture of this place - NeuroTalk’s RSD and CRPS Forum: An Online Community with Valuable Resources, RSDSA Review: 2012 Vol. 25, Issue 4:
I have seen laypeople create detailed postings on long threads over the years on topics that were then barely in the published medical literature. Two come prominently to mind. One was the role of autoimmunity in CRPS, first subject to detailed postings, including citations to the applicable medical literature, going back to at least December, 2006, which in turn predate any of the four articles listed under that heading in the RSDSA online library of Research and Clinical Articles. At this time neuroimmunologists at most of the major medical centers in the US refused to see people with CRPS because it was then accepted that CRPS was not autoimmune in origin. What set off this spark in the minds of the medical laity? The observation that women tended to go into remission during pregnancy, a hallmark of autoimmune conditions secondary to the need to avoid an immune attack on the “foreign” fetus in utero.
Check it out, Thread 785: Yeah! an autoimmune forum

It can be done.

take care,
mike


PS to ginnie: Completely agree with your view. I had - as you might have guessed - been working on this post since before your post went up. And as I try to make clear, I bear malice to none. (Hope you appreciate my reference to Vicc.)
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Last edited by Chemar; 02-04-2013 at 07:25 PM. Reason: quoted post was edited so response was too as per NT guidelines
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