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forestfortrees
393 Posts |
 Posted - 01/28/2011 : 13:21:49
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Hiya,
I have been working with several practitioners in the PPDA, and was recently asked by Dr. Peter Zafirides and therapist Alan Gordon to set up a poll on the preferred spelling of the term PPD(which will soon replace the term TMS). The possibilities so far are PsychoPhysiologic Disorders, Psycho-Physiologic Disorders, and Psychophysiologic disorders. Please take a moment to think about these choices and vote in the poll, which is located here . Sorry for the disturbance, but we are trying to come to a decision on this soon, so we can continue the 501(c)(3) process.
Forest (My story at tmswiki.org) |
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art
1903 Posts |
Posted - 01/28/2011 : 14:31:05
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I like the second because it's easiest on the eye in my opinion.
I'll go ahead and vote in the poll.
Thanks for the important work!! |
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skizzik
USA
783 Posts |
Posted - 01/28/2011 : 16:57:01
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replacing TMS?
Not a good idea in my mind. Sarno got away from the whole "psyhce thing" in the first place when he decided to break away from the "mind over back pain" (which of course was the title of his first book) because it turned many people off when they felt that having that diagnosis meant all the pain was in their head. A very insulting view.
I see it as a step backwards. At the same time, I really don't ever see TMS being a solid, medically embraced diagnosis ever. Too much money is made on it in the western world.
"Tension" is simply perfect. The postural muscles (the ones we don't voluntarily move, we simply get up and stand as opposed to moving limbs to walk or run) get tense due to mental stress makes sense.
Hey, tense makes sense
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susan828
USA
291 Posts |
Posted - 01/28/2011 : 17:45:58
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Forest, I have to totally agree with skizzik. These new names are 1.tongue twisters 2. start with the word psycho which even though WE know what that means, the implications to others hints of "psycho=crazy" 3. I spent a long time working with a rheumatologist and have seen every term since the 1700s, rheumatism, fibromyalgia, chronic muscle pain, myositis, and to take away the connection of tension in the "new phrase" would be confusing and not to the point.
The doctor and therapist should leave well enough alone. They know enough to know that muscle tension is responsible. Have them read this board. Tell them my case. I still have problems, but how come my pain disappeared the day I left my ex, who was keeping me in a constant state of apprehension? WE know why. Let the world understand this with a term that makes the connection implicit.
I am comfortable on this board because you all understand, so I am telling you the God's honest truth. Prolonged muscle tension does this. I have books from the 1800s, a huge collection. I did this voluntarily to see what remedies were around in the 1700s and beyond, to compare to what we have now. Over and over, the term "movable disease" was used, because it moves from one part of us to another. I was diagnosed with fibro about 12 years ago. One month, my legs, next month, my arms. All the same thing. Leave the term as it is, or at least have them incorporate the word muscle in it.
I also feel that after all of his hard word work, it would be dismissive and insulting to Dr. Sarno. |
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art
1903 Posts |
Posted - 01/28/2011 : 19:13:02
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I'm a little stunned at these responses. "Let the world understand? ""Let them read this board?" "Tell them my case?"
This is just so breezily naive I don't even know where to start. TMS is rejected, and contemptuously at that, by the vast majority of physicians...especially those who have a financial interest in performing surgeries. You think they're going to read a few cases on an Internet forum and somehow see the light?
Was it Upton Sinclair who said, It's almost impossible to get a man to understand something if his salary depends on him not understanding...
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Edited by - art on 01/28/2011 19:22:04 |
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susan828
USA
291 Posts |
Posted - 01/28/2011 : 19:43:09
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But Art, Forest said they "asked"him to set up a poll...so why wouldn't they want to hear what we have to say? This is the main TMS board online so why shouldn't they be interested in the participants input?
Maybe they won't care about my case as there are a million others but people have been known to have one person change their view. I can try, naive as it may seem to you. And if you group this physician or any others into one makes a living performing surgery, why would the proposed name changes make them more apt to get business? |
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art
1903 Posts |
Posted - 01/28/2011 : 20:03:00
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No one's saying not to give input, Susan. I know you mean well. I didn't mean to jump all over you. I just don't understand the objection to actual physicians and therapists trying to spread the word....
Read the following to get an idea what they're up to...
"On March 28, 2009 a TMS conference was held in Ann Arbor, Michigan which brought together the leading TMS practitioners for a series of lectures which examined the physiology and validity of TMS theory. At the closing of this conference a group of medical doctors, mental health practitioners, and patient activists organized a brief brainstorming session on the best ways to educate the public, conduct research, and increase clinical diagnosis of TMS.
What was found during this brainstorming session was that there was a large amount of enthusiasm about TMS activism. There were a lot of ideas to create core principles of TMS, and a strong desire to have another conference the following year. Forest created a private wiki, called TMSCore, specifically to provide practitioners a forum to discuss TMS-related ideas, develop a set of core principles, and work together to organize another TMS conference.
In the beginning the TMSCore Wiki was successful at providing practitioners a place to discuss ideas and theories about TMS, as well as continue building professional relationships between practitioners. Dave Clarke MD, Barbara Kline LCSW-C, Alan Gordon LCSW, Colleen Perry MFT, Georgie Oldfield, and many others were active on the wiki. The TMSCore wiki was very loosely organized and lacked any strong structure. Eventually the progress on the issues began to slow to a halt, and it became clear that in order to capitalize on the enthusiasm a centralized structured organization would be needed. After seeing the decline in participation on the wiki, Forest wrote an essay in which he reevaluated the strategic plan of the wiki, and mandated creating a TMS Educational Working Group which would work from the basis of the ideas formed at the brainstorming session, including organizing another TMS conference. Forest used a specific criteria in choosing members of the working group. The criteria used was choosing practitioners who organized the first conference, have published articles and books, three doctors and three therapists from different regions, as well as individuals who were active in raising TMS awareness. With this criteria in mind Forest added Frances Sommer Anderson PhD, Dave Clarke MD, Alan Gordon LCSW, Peg Hanson,RN, BSN, David Schechter MD, Howard Schubiner MD, Eric Sherman PsyD, John Stracks MD, and Peter Zafirides MD.Shortly thereafter the group became an incorporated non-profit agency.
With everyone on board the group began to organize teleconference meetings so they could discuss issues and create a strategic plan on how to move forward. In the first teleconferences Dr. Howard Schubiner encouraged the group to focus on having another conference, since most other professional groups start out by holding a series of conferences, which can help groups gain notoriety and support in their field. Alan Gordon became the chairperson of the 2nd conference, which was called the LA Mind-Body Conference at UCLA. Gordon was able to find funding for the conference as well as having it co-sponsored by the Insight Center in LA, which allowed the conference to offer Continuing Educational Units (CEU). Alan Gordon also found a graphic designer to create a pamphlet for the conference.
Because of Alan Gordon's tremendous efforts the LA Mind-Body Conference was a success. There were six speakers at the conference including Frances Sommer Anderson, Dave Clarke, David Schechter, Howard Schubiner, and keynote speaker Ernest Rossi, with Forest acting as the MC. The speakers presented information on their research and history of treating patients with TMS. Through organizing the conference Alan Gordon also made a contact with Doug Lynch of Lynchpin Bio-Media, which develops PR campaigns for companies. Doug Lynch presented at the conference on the media's enthusiasm and skepticism with respect to reporting on new or breakthrough therapies, and how clinicians can engage with local media.
At the end of the conference the members of the working group and Doug Lynch met, and discussed the future of organization. The working group decided to have Doug Lynch and Lynchpin Bio-Media to help formulate a a PR campaign and give suggestions on the most effective way to gain legitimacy for the working group and raise awareness of TMS. Lynchpin Bio-Media assigned eight individuals to advise the working group in its mission. The PR group made several recommendations, including developing a new name for the condition, along with a tag line that expresses the mission of the organization. It was the recommendation of Lynchinpin Biomedia to change the name of TMS to Psychophysiologic Disorders (PPD). After careful deliberation the working group choose to accept these recommendations and change their name to the Psychophysiologic Disorders Association (PPDA). "
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susan828
USA
291 Posts |
Posted - 01/28/2011 : 20:25:24
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| I don't object to anyone spreading the word, if it came across that way. I have doctors that have no idea who Sarno is and if I tell them, they make a face as if he's a quack. Thanks for posting that excerpt. If they are going to form an association, I don't care what they call it at this point if it serves to educate physicians and the public. I remember there was the Phobia Association of America. It evoked images of snakes and spiders :-) so they changed it to Anxiety Disorder Association of America. Whatever works. |
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skizzik
USA
783 Posts |
Posted - 01/28/2011 : 20:26:00
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"Doc, my back is killin me"
"Well, you've been a patient of mine for a long time, and theres something I've been wanting to discuss with you and all the symptoms you've been having."
"Oh great, it's about the herniation right? It was clear as day on the mri, and the neuro told me something about degeneration, is that it?"
"um, no, actually it's about your personality traits, your'e a very uptight person, people pleaser, trouble saying no, and I know you had an unsettling upbrining."
"Doc, where are you going with this, can't I just get some loritabs and we can discuss how my pre-op visit will go with you."
"We first need to explore psycho....
"WHAT? are you kiddin me? I'm in real pain doc, and your'e calling me a psycho? You think this is just all in my head? Am I gonna get the meds or not? You know what, forget it, I'm outta here, YOUR'E the freakin PSYCHO!"
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Back2-It
USA
438 Posts |
Posted - 01/28/2011 : 20:40:22
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As a TMS/PPDA newbie, I hardly feel qualified to comment, though that never stopped me in the past. But...having been out tonight and being more pain free than in many, many months...
skizzik...
quote:
"Tension" is simply perfect. The postural muscles (the ones we don't voluntarily move, we simply get up and stand as opposed to moving limbs to walk or run) get tense due to mental stress makes sense.
I agree, because it is the truth. Simple.
susan828...
quote:
Forest, I have to totally agree with skizzik. These new names are 1.tongue twisters 2. start with the word psycho which even though WE know what that means, the implications to others hints of "psycho=crazy"
I was told early on that my problem was all in "my head" by the psycho-therapy community. What was not told to me was that the pain was real. This was elegantly explained by Dr. Sarno in HBP and MBP. I rejected the idea that it was all in my head because I felt actual pain. Accept that the pain is in your head, I was told, and you will get better. Even after "accepting" that it was in my head, the pain remained. It was after I read that the pain was real, and that I wasn't crazy, was when I began my road to recovery.
No matter what "it" is called, there will not be wide spread acceptance, just as the Titanic couldn't turn on a dime.
When it comes down to it it is TMS (Terrible Mind Situation). To that I add KISS. We know what that means. "Tension" is much more acceptable than "Psychophysiologic". |
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art
1903 Posts |
Posted - 01/28/2011 : 21:10:28
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I'm not sure I'm following this. You folks want to rename TMs by calling it "tension?"
As in, I'm suffering from "tension?" A tad overly broad don't you think?
Reading through this thread is causing me plenty of tension (no lie), but that doesn't necessarily convert to psychosomatic symptoms.
The idea behind renaming TMS is to make it more self-explanatory while attempting to educate physicians and the general public. TMS is a mysterious term that doesn't mean anything in and of itself. Tension myositis syndrome is highly technical and almost as opaque.
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EileenTM
92 Posts |
Posted - 01/28/2011 : 21:40:28
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Personally I like what Dr. Scott Brady calls it: AOS, autonomic overload syndrome. Where the autonomic system is overactive due to stress and creates a wide range of symptoms. I am a marketing consultant. And agree with everyone else that the use of "psyche" in almost any form could be a real negative. On what basis or market research did the PR firm make its recommendation?
What my firm does is narrow it down to a short list of possibilities and then test those against the target audience.
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art
1903 Posts |
Posted - 01/29/2011 : 06:16:23
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| I do agree that "psycho" is not user friendly. I'd not have picked it. |
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skizzik
USA
783 Posts |
Posted - 01/29/2011 : 06:30:57
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hi Art, I'm only implying to leave tms as is.
Hi Eileen. I relied on Dr.Brady's book at certain times. My problem with the AOS is that it suggests that someone is "overloaded." That term would not go over well in an office visit or when your'e casually telling a friend about an option they might have. No-one wants to hear they're overloaded ('cept me mum who's ego is fueled by sympathy ). As if they're not mentally capable of handling they're life.
God bless Dr. Schubiner who I traveled to see at my worst, and was pivotal in me continuing to ignore the pain. But he too has his own term MBS (mind body syndrome). Again, someone unfamiliar with tms does'nt want to hear that it's all in the head. And "mind" in the title, or "psycho" is a big turn off.
It's my feeling that the western world can agree with "tension" because we all feel feelings of wanting to (ie) yell at our boss or the rude waitress (careful, she'll loogy in your soup ) and we hold it in. This is not the case, or less of one the more non-western the society. |
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susan828
USA
291 Posts |
Posted - 01/29/2011 : 06:43:58
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skizzik, your skit made me laugh...so true! I feel that even though TMS is a term that nobody I now is familiar with, it can become a known over time. Look at TMJ...99% of the population does not know what it stands for but they've heard of it and know what it means or they know someone who has it (actually, it's TMD but you know what I mean).
Maybe there's a better term. Maybe myositis should be eliminated and simplify the term but I do like the idea of the word tension in there. Tension conversion syndrome...I don't know..sounds too much like hysterical conversion, bad imagery.
I was at a party a few months ago and everyone walked into the kitchen. I was left alone with someone I can't stand. The second I was stuck with him and felt I had to be polite, I got an excruciating jaw pain. Same place I always get it. It went away when I left the room. But you all know this already...just my two cents, I do like the word tension, just easy for the public to understand. |
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Back2-It
USA
438 Posts |
Posted - 01/29/2011 : 07:31:58
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skizzik...
quote:
God bless Dr. Schubiner who I traveled to see at my worst, and was pivotal in me continuing to ignore the pain. But he too has his own term MBS (mind body syndrome). Again, someone unfamiliar with tms does'nt want to hear that it's all in the head. And "mind" in the title, or "psycho" is a big turn off.
This was why I put down MBP after buying it blind, because I mistakenly thought that MBP was a summary of what the psycho-therapy world was telling me: that the pain was not real and that it was all in my head. Had I read the book before seeing a psychiatrist... well if I had read the book first I doubt I would have seen a psychiatrist.
The point is: When the pain didn't go away, I sought out a structural reason, and I was presented with one: an MRI with a protruding disc. The reason I thought my pain was from my own mind originally was by the way it came on with extreme stress. Once I had the structural reason I told the shrink that the pain wasn't in my head but in my back. Then I proceeded to get steadily worse. Had TMS been reclassified as some type of "psycho" problem, I would never have even considered MBP again.
When I took my classes TMS was referred to as MBS as well. It makes sense and it's not as confusing or threatening to a person as something with "psycho" in it. |
Edited by - Back2-It on 01/29/2011 07:45:52 |
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art
1903 Posts |
Posted - 01/29/2011 : 08:59:38
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Were I king of the world, I'd want to use something self-explanatory without the unfortunately resonating "psycho"...
I kind of like "somatization disorder". Or, if that sounds too "PSYCHOlogical," (the term was once used to mean just this kind of thing) maybe something like "somatosis." Soma for body, osis the suffix meaning "process" or "condition."
So the process of converting something to the body, that is something that becomes expressed through bodily symptoms...
Just to add, somatosis would have the virtue of sounding like a legit physical illness.
EMployee: "I can't come to work today boss cause I have somatosis."
Boss: "Yikes. That sounds bad. No problem. Take as many days as you need."
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Edited by - art on 01/29/2011 09:08:09 |
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skizzik
USA
783 Posts |
Posted - 01/29/2011 : 09:30:25
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quote:
Originally posted by susan828
skizzik, your skit made me laugh...so true!
yeah, only because we've all been there
quote:
Originally posted by susan828
Maybe there's a better term. Maybe myositis should be eliminated and simplify the term but I do like the idea of the word tension in there. Tension conversion syndrome...I don't know..sounds too much like hysterical conversion, bad imagery.
here's where I'll get complicated. I actually like the myositis or myoneural or whatever he's changing it too, because leaving it at tension is too simplistic actually. When the word tension is combined with an actual medical term, then I feel it has credibility.
Same Doctor, same patient; Alternate scene:
"Doc, I have Myo what?"
"Myositis syndrome, is actually short for Tension Myosotis Syndrome or TMS."
"Really? What is that? Sounds serious."
"The pain from this syndrome is very serious, it's caused by tension and excrutiating and can become chronic if your'e not careful with the treatment."
"yeah, like the tension I get in my muscles when I turn my head, or bend over"
"Exactly, your'e familiar with migraines or tension headaches right? I saw them checked off in the symptom categories in your past medical health profile"
"Oh, for sure. When I get stressed I get headaches, it used to be real bad. Hmm.. that was before this back pain kicked in now that I think about it. But this pain started with a real physical injury."
"From my standpoint, you were getting tired of the headaches, and you kept mentioning to me how they made no sense anymore. Your scans kept coming back normal. Your mind was looking for something else to wrap it's head around to keep you distracted, you simply bending over to pick up that heavy laundry bushell was the perfect reflexive opprotunity for TMS. It's the same mechanism as the way your headaches were produced actually; built up anger and stress thats not dealt with soothed or released creates incredible tension that we can't comprehend, and in the same way your blood vessels constrict to cause your past headaches, so too do your postural muscles, making them tight and sore to the touch, making it hard to bend over or turn your head."
"That makes so much sense, I really did'nt understand fully how herniated disc could cause all this pain, in fact, the pain was'nt even that bad until the neurosurgeon pointed it out and told me how decrepid my spine was becoming. I walked into the appoitment feeling okay, I just wanted to hear the pain would go away eventually, that it would'nt get any worse and he scared the crap outta me. I could barely walk to my car after that, and I got shooting stinging leg pain that afternoon. And that was only after he asked me if I had leg pain. Wierd. I don't know, this whole thing is just terrible, why now? In my life all this stuff happens at once it seems."
"What do you mean?"
"Just problems at work, my wife, my kids, the car keeps breaking down, thinking about my boss makes me lose sleep, and I'm just trying to hold it all together so everyone can lean on me, and feel they have security in me, I don't want my kids having the crappy unsecure childhood I had. But all I think about now is this pain, and how my life would be perfect with out it."
"You're really taking on a lot."
"You don't know the half of it really, tell me more doc, this tension thing sounds right up my alley."
"Theres a book or two I'm gonna reccomend to you, as well as some websites that include some forums with people like yourself that have been where you are and can get you on the right track as soon as I give you some meds scripts to hold you over."
"Books? Websites? I've never heard of this before, how did I not see this stuff when I googled herniations?"
"Well, we're just catching on here in the western medical part of the world, and our early approaches may have scared off patients when we implied that mental stress is the cause of thier pain, words like psycho, and somatic which are helpful in the explanation of TMS once the patient grasps the concept, are kind of avoided in the beginning because they tend to insult the patient. They don't understand how real excrutiating pain can be caused by the brain, or why their mind would do this to them."
"Not me doc, I've been coming to you for years, you could never offend me. I think this TMS thing really applies to me." |
Edited by - skizzik on 01/29/2011 09:33:34 |
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skizzik
USA
783 Posts |
Posted - 01/29/2011 : 09:35:23
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quote:
Originally posted by art
EMployee: "I can't come to work today boss cause I have somatosis."
Boss: "Yikes. That sounds bad. No problem. Take as many days as you need."
We should rename this whole board to "WTTMST"
Welcome to TMS theatre! |
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Dr Dave
USA
53 Posts |
Posted - 01/29/2011 : 10:30:44
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Hello All. Thank you for your comments. They strongly resemble the thoughts of our group of experienced clinicians and lay people (the PPDA) as expressed in our numerous teleconferences over the last year.
We agree that having "psycho" in the term will not be popular with many patients when they first hear it. We chose it anyway because some version of psychophysiologic (see Forest's poll) will convey legitimacy to medical clinicians and it is essential to get them on board. Most of you went to medical clinicians as one of your first steps in seeking relief. But few medical clinicians have had any formal training in how to diagnose and treat psychophysiologic illness (TMS). The PPDA intends to change this unconscionable situation but we must be accepted as an evidence-based, scientific body in order to do that. TMS will never have sufficient credibility for that which is why we are moving on.
Part of PPDA's training is that psychophysiologic symptoms are as real as any other symptoms. Once everyone (clinicians and the public) gets that concept, they realize the term does not imply any mental illness. In fact, most of my patients are mentally stronger than average because of how much they have endured.
The PPDA would love to know which of the three versions of the term seems best to you. Please participate in the poll so your voice can be heard. Thank you!
Dave Clarke Stressillness.com |
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skizzik
USA
783 Posts |
Posted - 01/29/2011 : 11:11:05
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Dr. Dave, I loved your book, it was an eye opener as to the challenge that docs go thru to go out of their way to help steer patients down the TMS path. (or whatever your'e gonna call it)
It's such an effort, and it appears it can be one heck of a risk to do so in the fear that you may be labled a "quack" by conventional patients via word of mouth. I can see why most doc's are afraid to go there at all. Kudos! |
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Poll on new term for TMS
