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Dr. Bob is Robert Hsiung, MD,
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Posted by pegasus on July 27, 2004, at 14:42:45
In reply to Re: scientific research, posted by Ilene on July 27, 2004, at 12:28:35
Yes, absolutely, it's nice to have proof, if you can get it. I'm just saying that if you limit yourself to pursuing treatments that are "proven" to be effective, then you might miss something that would be effective that hasn't been proven. Which is a shame if the treatments that do have proof don't happen to work in your particular case. Because it's notoriously difficult to study psychological treatments (because of the internal and subjective nature of most of the processes and results), most available treatments don't have scientific proof to back them up.
Also, as a scientist, I'd like to point out that scientific proof is a rare and elusive beast. Most research is limited in scope and applicable only to the narrow conditions included in the particular study. Most research only points in particular directions, rather than proving anything.
Personally, I've had great results with types of treatments that do not have scientific proof backing them up. And yet, I think we all need to make that call for ourselves. If you think it's best to rely only on proven treatments, then that is definitely what you should do, and I wholeheartedly support that. Just realize that there may be valid reasons for others to make other decisions.
pegasus
Posted by partlycloudy on July 27, 2004, at 14:57:45
In reply to Re: scientific research » Ilene, posted by pegasus on July 27, 2004, at 14:42:45
I would like to frame this post, if I may. It's beautifully put.
Posted by Larry Hoover on July 27, 2004, at 15:27:14
In reply to Re: scientific research » Ilene, posted by pegasus on July 27, 2004, at 14:42:45
> Yes, absolutely, it's nice to have proof, if you can get it. I'm just saying that if you limit yourself to pursuing treatments that are "proven" to be effective, then you might miss something that would be effective that hasn't been proven. Which is a shame if the treatments that do have proof don't happen to work in your particular case. Because it's notoriously difficult to study psychological treatments (because of the internal and subjective nature of most of the processes and results), most available treatments don't have scientific proof to back them up.
>
> Also, as a scientist, I'd like to point out that scientific proof is a rare and elusive beast. Most research is limited in scope and applicable only to the narrow conditions included in the particular study. Most research only points in particular directions, rather than proving anything.
>
> Personally, I've had great results with types of treatments that do not have scientific proof backing them up. And yet, I think we all need to make that call for ourselves. If you think it's best to rely only on proven treatments, then that is definitely what you should do, and I wholeheartedly support that. Just realize that there may be valid reasons for others to make other decisions.
>
> pegasusWell put. Hear! Hear!
If I may be so bold as to extend your comments....We have no objective proof of pain. We have no objective proof of major depression. We have no objective proof of fatigue. We have no idea if different individuals are even talking about the same thing when we they use those terms. Declaring a disorder or a treatment to be subjective may well be a true statement, but that does not make such a declaration, in order to dismiss or trivialize the experience of anybody else, fair, valid, or responsible.
Lar
Posted by fires on July 27, 2004, at 16:56:37
In reply to Re: scientific research » Ilene, posted by pegasus on July 27, 2004, at 14:42:45
> Yes, absolutely, it's nice to have proof, if you can get it. I'm just saying that if you limit yourself to pursuing treatments that are "proven" to be effective, then you might miss something that would be effective that hasn't been proven. Which is a shame if the treatments that do have proof don't happen to work in your particular case. Because it's notoriously difficult to study psychological treatments (because of the internal and subjective nature of most of the processes and results), most available treatments don't have scientific proof to back them up.
>
> Also, as a scientist, I'd like to point out that scientific proof is a rare and elusive beast. Most research is limited in scope and applicable only to the narrow conditions included in the particular study. Most research only points in particular directions, rather than proving anything.
>
> Personally, I've had great results with types of treatments that do not have scientific proof backing them up. And yet, I think we all need to make that call for ourselves. If you think it's best to rely only on proven treatments, then that is definitely what you should do, and I wholeheartedly support that. Just realize that there may be valid reasons for others to make other decisions.
>
> pegasusI tried many meds over the last 20 years for "off-label" uses, so there was no proof that they worked for what I had -- but they did not defy current scientific knowledge.
Some of the "New Age" theapies are contrary to science as we know it.
Posted by Ilene on July 27, 2004, at 17:32:52
In reply to Re: scientific research » Ilene, posted by pegasus on July 27, 2004, at 14:42:45
> Yes, absolutely, it's nice to have proof, if you can get it. I'm just saying that if you limit yourself to pursuing treatments that are "proven" to be effective, then you might miss something that would be effective that hasn't been proven. Which is a shame if the treatments that do have proof don't happen to work in your particular case. Because it's notoriously difficult to study psychological treatments (because of the internal and subjective nature of most of the processes and results), most available treatments don't have scientific proof to back them up.
>That makes it terribly difficult to decide whether to start psychotherapy and what kind of therapist to look for.
> Also, as a scientist, I'd like to point out that scientific proof is a rare and elusive beast. Most research is limited in scope and applicable only to the narrow conditions included in the particular study. Most research only points in particular directions, rather than proving anything.
>CBT is supposedly the only kind that's been shown to work. I don't know if that's because it's fairly structured, so it's easier to quantify, because it just happens to have been studied more, whether it actually is superior, or for other reasons. There are certainly people who have "failed" CBT, or rather, CBT has failed them.
> Personally, I've had great results with types of treatments that do not have scientific proof backing them up. And yet, I think we all need to make that call for ourselves. If you think it's best to rely only on proven treatments, then that is definitely what you should do, and I wholeheartedly support that. Just realize that there may be valid reasons for others to make other decisions.
>How did you decide on those treatments?
Of course I realize that other people have their own criteria for making decisions, but I think it's important to be an educated consumer. I'm the person who always reads Consumer Reports before buying anything. I read opposing political opinions, too.
Posted by AuntieMel on July 27, 2004, at 17:50:54
In reply to Re: scientific research » Ilene, posted by pegasus on July 27, 2004, at 14:42:45
<Most research only points in particular directions, rather than proving anything.
Or disproving anything.
I write geophysical software. In general, the software follows "proven" equations......
BUT, like studies of therapy types, the data we work on is a discrete sampling of a continuous function.
So, even though it is hard science, there are also subjective modifications.
Posted by fires on July 27, 2004, at 18:12:44
In reply to Re: scientific research, posted by Ilene on July 27, 2004, at 17:32:52
Posted by pegasus on July 27, 2004, at 22:36:50
In reply to Re: scientific research, posted by Ilene on July 27, 2004, at 17:32:52
> That makes it terribly difficult to decide whether to start psychotherapy and what kind of therapist to look for.
Yes it does, unfortunately. We're often left needing to use criteria other than scientific evidence. Having hard studies would be easier. And yet in the real world, we often don't.
> CBT is supposedly the only kind that's been shown to work. I don't know if that's because it's fairly structured, so it's easier to quantify, because it just happens to have been studied more, whether it actually is superior, or for other reasons. There are certainly people who have "failed" CBT, or rather, CBT has failed them.
Right, exactly. CBT has some evidence to back it up, and it certainly does seem to help, especially for depression. But it doesn't seem to work for everyone and every type of problem. Too bad.
> How did you decide on those treatments?
Well, I used my common sense and my gut feelings. I looked around a lot to find a therapist that felt right to me, and a method that made sense to me. And I checked in with myself frequently to see if I thought I was making progress, and still finding the process to make sense. Sorry, I wish there was some easier, more systematic way to find it. But the good news is that this way of finding good therapy does seem to work at least sometimes. It's a lot harder, I would guess, when if one doesn't trust their gut feelings about things.
> Of course I realize that other people have their own criteria for making decisions, but I think it's important to be an educated consumer. I'm the person who always reads Consumer Reports before buying anything. I read opposing political opinions, too.
Yes, I would agree with this. I was also encouraged by the Consumer Reports study of psychotherapy methods a while back which showed that all the methods they examined (including CBT) gave fairly equivalent positive results. This doesn't prove anything - because it could be that everyone they asked naturally got better on their own with time. But it's possible also that engaging in any type of psychotherapy can be helpful. Some people consider that this study may indicate that having a therapeutic relationship is what is helpful, and not so much the exact things that you do during therapy.
I think we fundamentally agree. I guess maybe I'm more interested in exploring outside the bounds of what research can show me. But I'm not saying that research is useless.
pegasus
Posted by AuntieMel on July 28, 2004, at 12:12:14
In reply to Re: scientific research » Ilene, posted by pegasus on July 27, 2004, at 22:36:50
>> That makes it terribly difficult to decide whether to start psychotherapy and what kind of therapist to look for.
>Yes it does, unfortunately. We're often left needing to use criteria other than scientific evidence. Having hard studies would be easier. And yet in the real world, we often don't.
Another catch-22. Unfortunately, those needing the help the most are the least able to research methods and interview therapists.
In that case when just getting started you either have to rely of a referral from the med-guy or hope for the best. Then, gut reaction can at least tell you if you are being harmed, in which case (easier said than done) you try again. Or give up.
If you aren't harmed by the first try and are at least a little improved, then you can use that strength and insight to find the next 'better' therapist. At least you have an idea of what doesn't work for you. And that is - ta da - research.
Posted by Ilene on July 28, 2004, at 19:59:07
In reply to Re: scientific research » Ilene, posted by pegasus on July 27, 2004, at 22:36:50
But it's possible also that engaging in any type of psychotherapy can be helpful. Some people consider that this study may indicate that having a therapeutic relationship is what is helpful, and not so much the exact things that you do during therapy.
>That's something I wonder about.
Posted by Ilene on July 28, 2004, at 20:15:39
In reply to Re: scientific research » pegasus, posted by AuntieMel on July 28, 2004, at 12:12:14
> In that case when just getting started you either have to rely of a referral from the med-guy or hope for the best. Then, gut reaction can at least tell you if you are being harmed, in which case (easier said than done) you try again. Or give up.
>I got a referral to a social worker from a former pdoc. We lasted about three sessions. I thought she was brainless. I think I need to work with someone who can out-argue me. My most recent pdoc said I was too smart for my own good, because I could always think of a reason why something wouldn't work or wasn't right.
(We were doing psychotherapy of a sort, too. I was seeing her for an hour a week. Part of the time was spent on meds, and part of it on other things. She was the one who got me started on my diary, which I was (am) posting online on Social. It made her laugh. What I really liked about her was that she *listened*, she read the articles I brought her, and she took me up on my suggestions, such as trying Cytomel.)
Posted by AuntieMel on July 29, 2004, at 20:36:34
In reply to very well said Ilene!! (nm) » Ilene, posted by fires on July 27, 2004, at 18:12:44
Posted by fires on July 29, 2004, at 21:58:37
In reply to Re: are you ok fires? (nm) » fires, posted by AuntieMel on July 29, 2004, at 20:36:34
I'm doing ok, but not very well. Waiting to see Neuro. at UCLA in late August. Also, looking into surgical/endoscopic treatments for GERD. To think that a Pdoc recommended therapy for those things!? Yikes!
Posted by Ilene on July 29, 2004, at 23:33:19
In reply to Re: are you ok fires? » AuntieMel, posted by fires on July 29, 2004, at 21:58:37
Did you say you had POTS? I have a related condition, called neurally mediated hypotension.
Posted by fires on July 30, 2004, at 0:23:40
In reply to Re: are you ok fires? » fires, posted by Ilene on July 29, 2004, at 23:33:19
> Did you say you had POTS? I have a related condition, called neurally mediated hypotension.
Yes. It appeared I had NMH for a very brief time , but then I was misdiagnosed with Parnate caused tachycardia, then anxiety,then I DXed myself with POTS and showed a Cardio. my "home" BP/Pulse test results.
An earlier Holter monitor test, and then an event recorder showed POTS (the subtype without hyotension).
bye
Have you ever been Dxed with Chronic Fatigue Syndrome? Many of those patients have NMH or another type of dysautonomia.
bye
Posted by gardenergirl on July 30, 2004, at 6:57:27
In reply to Re: are you ok fires? » AuntieMel, posted by fires on July 29, 2004, at 21:58:37
fires,
I just wanted to say that I hope you find some relief for your GERD and POTS. Being ill is crappy. I wish you good health and wellness.Take care,
gg
Posted by AuntieMel on July 30, 2004, at 8:41:35
In reply to Re: are you ok fires? » AuntieMel, posted by fires on July 29, 2004, at 21:58:37
Please - Could you give a brief explanation of the conditions and what the acronyms are? I don't need a full discussion - I can get that from google. But it would help to have a starting point.
Thanks
Mel
Posted by fires on July 30, 2004, at 10:24:36
In reply to Re: are you ok fires? » fires, posted by gardenergirl on July 30, 2004, at 6:57:27
> fires,
> I just wanted to say that I hope you find some relief for your GERD and POTS. Being ill is crappy. I wish you good health and wellness.
>
> Take care,
> ggI've already found some relief, just looking for more. As a former T (Pdoc) told me: Trying and failing is ok, ceasing to try is not ok. Thanks for the good wishes.
Posted by fires on July 30, 2004, at 10:32:57
In reply to Re: i'm medically uniniteated » fires, posted by AuntieMel on July 30, 2004, at 8:41:35
> Please - Could you give a brief explanation of the conditions and what the acronyms are? I don't need a full discussion - I can get that from google. But it would help to have a starting point.
>
> Thanks
>
> MelPOTS = Postural Orthostatic Tachycardia Syndrome, and is frequently misdiagnosed as anxiety or other Psych. disorder.
http://www.potsplace.com/pots_an_overview.htm
GERD = Gastroesophageal Reflux Disorder = bad persistent heartburn, which can cause Barrett's Esophagus, which is a pre-cancerous condition.
bye
Posted by lucy stone on July 30, 2004, at 12:52:16
In reply to Re: are you ok fires? » Ilene, posted by fires on July 30, 2004, at 0:23:40
My daughter has NCS, a condition with some symptoms similar to POTS. The web site you gave below has a very good section on NCS with some new jounal articles which I have forwarded to her doctor, so I thank you for giving it. In order to definitively diagnose the NCS she had a battery of tests including but not limited to: EKG, sleep deprived EEG, cardiac and carotid ultrasounds, treadmill stress tests, cardiac event monitor, and a tilt table test with isoproterenol. The tilt table test proved definitive. The web site specifically states that patients who suspect they have POTS should not self diagnose, yet you stated that you self diagnosed. It addition, you say that it was diaganosed with an event monitor, but the web site does not say that POTS can be diagnosed by an event monitor. An event monitor is used to determine the effect of POTS on cardiac activity. How was your POTS definitively diagnosed? It is important that your condition be diagnosed correctly if you are to receive proper treatment.
> > Did you say you had POTS? I have a related condition, called neurally mediated hypotension.
>
> Yes. It appeared I had NMH for a very brief time , but then I was misdiagnosed with Parnate caused tachycardia, then anxiety,then I DXed myself with POTS and showed a Cardio. my "home" BP/Pulse test results.
>
> An earlier Holter monitor test, and then an event recorder showed POTS (the subtype without hyotension).
>
> bye
>
>
>
>
>
> Have you ever been Dxed with Chronic Fatigue Syndrome? Many of those patients have NMH or another type of dysautonomia.
>
> bye
>
>
Posted by fires on July 30, 2004, at 14:36:57
In reply to Re: are you ok fires?, posted by lucy stone on July 30, 2004, at 12:52:16
> My daughter has NCS, a condition with some symptoms similar to POTS. The web site you gave below has a very good section on NCS with some new jounal articles which I have forwarded to her doctor, so I thank you for giving it. In order to definitively diagnose the NCS she had a battery of tests including but not limited to: EKG, sleep deprived EEG, cardiac and carotid ultrasounds, treadmill stress tests, cardiac event monitor, and a tilt table test with isoproterenol. The tilt table test proved definitive. The web site specifically states that patients who suspect they have POTS should not self diagnose, yet you stated that you self diagnosed. It addition, you say that it was diaganosed with an event monitor, but the web site does not say that POTS can be diagnosed by an event monitor. An event monitor is used to determine the effect of POTS on cardiac activity. How was your POTS definitively diagnosed? It is important that your condition be diagnosed correctly if you are to receive proper treatment. <<
I first self-diagnosed, then saw a Cardio. who Dxed me. DX = tachycardia and symptoms while standing for many hours after being hooked up to event monitor which recorded tachy. Also, 2 echos done to rule out other causes. Also, Holter done a year before Dx showed "tachy during much of 24 hr. period."
Self DXed using the standing still "poor man's tilt table test" -- preferred by those in the know -- because people don't tilt. People lay, stand, sit, but don't tilt.
The fact that Florinef has helped is yet more proof of POTS.
NCS is much different than my type of POTS (there are subtypes) because I don't get hypotension or syncope.
Glad you found good info. on the link.
bye
Posted by AuntieMel on July 30, 2004, at 16:03:32
In reply to Re: are you ok fires? » lucy stone, posted by fires on July 30, 2004, at 14:36:57
Well, this certainly helps to explain some of the problems you had with therapy!
Hoping this doesn't sour too flip, and I don't know what your symptoms, but:
Patient: Doc, I get this constant heartburn and sometimes I get this strange feeling, kinda like I'm dizzy, but not quite.
Doc: Well, it sssouunds to me like you might have an anxiety disorder. Those can be treated by the same drugs as depression. Here, take these pills, but I strongly recommend you see a therapist.
Meanwhile, you could die. But it's ok, because you didn't kill yourself, so he must have done his job.
Posted by Ilene on July 30, 2004, at 18:39:56
In reply to Re: are you ok fires? » Ilene, posted by fires on July 30, 2004, at 0:23:40
> Have you ever been Dxed with Chronic Fatigue Syndrome? Many of those patients have NMH or another type of dysautonomia.
>
> bye
>
>
Yes, I have CFS. It stinks. I had a flare-up for most of last week.My NMH is better now that I take Florinef and moved to a cooler climate, but I can't exercise anymore. Stress triggers it, too.
Posted by Ilene on July 30, 2004, at 18:52:52
In reply to Re: are you ok fires?, posted by lucy stone on July 30, 2004, at 12:52:16
> My daughter has NCS, a condition with some symptoms similar to POTS.
What kind of treatment is your daughter getting? Neurally mediated hypotension and NCS are quite similar. I take Florinef, I avoid heat, and I don't exert myself.
I self-diagnosed too, but my last internist, who is very experienced with CFS & NMH, didn't think a tilt-table test would tell him anything he didn't already know. Besides, my BP drops by 20 mm when I go from lying to standing as it is.
Posted by lucy stone on July 30, 2004, at 22:09:29
In reply to Re: are you ok fires? » lucy stone, posted by Ilene on July 30, 2004, at 18:52:52
The treatment has been very frustrating because as you know these disorders are difficult to treat. Her situation is difficult because she is a competitive runner and dancer and her syncopy is triggered by exercise. She needed the tilt table to differentate between the NCS and the type of cardiac defect that make healthy young people die with exercise. Fortunately her type is not dangerous expect for the possibility of hurting herself when falling. Dehydration makes it worse and we live in a hot part of the country. She takes a beta blocker and salt tablets, stays hydrated and tries to eat a balanced diet. She also has more trouble when she is tired and stressed so we encourage her to get enough sleep and manage her stress. Her condition is better right now although it goes in cycles. She has also learned to recognize the signs so she can sit down when she feels faint. In her case it is familial because my husband's brother has the same condition. Just to keep it on the psych board, she is recovered from anorexia. The NCS started when she when through puberty, the same time she developed her eating disorder, and it was misdiagnosed for several years as a side effect of her disorder. It wasn't until she had maintained a normal weight for over a year that the docs looked for something else as a cause of her fainting.
> > My daughter has NCS, a condition with some symptoms similar to POTS.
>
> What kind of treatment is your daughter getting? Neurally mediated hypotension and NCS are quite similar. I take Florinef, I avoid heat, and I don't exert myself.
>
> I self-diagnosed too, but my last internist, who is very experienced with CFS & NMH, didn't think a tilt-table test would tell him anything he didn't already know. Besides, my BP drops by 20 mm when I go from lying to standing as it is.
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