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Dr Dave

USA
53 Posts

Posted - 08/31/2010 :  21:47:19  Show Profile  Reply with Quote
Hello All,

I'm writing on behalf of a group that would like to hear your thoughts.

Following a conference about TMS in Ann Arbor, MI in March 2009, a small but diverse group of medical clinicians, mental health practitioners and people with TMS have been discussing ways to improve the diagnosis and treatment of TMS. After putting on another TMS conference in Los Angeles in March, 2010 (attended by 200 health care professionals) we were joined by a group of marketing and public relations professionals who believed in our work so much they offered their service free of charge. (One of them even put two of us, myself included, on the Rosie O'Donnell radio show.)

Many teleconferences and emails later, a consensus emerged that long-term success in relieving TMS will depend on increasing the knowledge and support from all three groups represented on our ad hoc committee: people with TMS, medical clinicians and mental health professionals. It also became clear to our group that the term TMS had been, and likely would continue to be, rejected by physicians.

Consequently, our group spent months looking for a new term that would meet the needs of all the key stakeholders. There was considerable debate because many of our group had been using TMS for many years. The term that eventually united us, however, was PsychoPhysiologic Disorders or PPD. One of the strengths of this term is that it can be modified for specific individuals as in, for example, psychophysiologic abdominal pain or psychophysiologic vomiting or psychophysiologic back pain. (This is why we use the plural form "disorders"). We are told that Dr Sarno is now using this term though he was not part of our group. PsychoPhysiologic Disorders clearly emphasizes the equal importance of mind and body and will be comfortable and acceptable to MDs, mental health professionals and, we hope, people with the disorders.

Our group plans to create a non-profit 501c3 company named the PsychoPhysiologic Disorders Association to advance the diagnosis and treatment of stress-induced medical conditions. As key participants in the TMS community, we would love to hear your views and opinions on the name choice and on our future work. We will keep you informed of our progress.

Thank you. Dave Clarke

art

1903 Posts

Posted - 09/01/2010 :  05:22:34  Show Profile  Reply with Quote
Hey Dr. Dave,

I like it. I can see why you needed to steer clear of PsychoSomatic Disorder, given all the misunderstanding surrounding that term, and given the need for something fresh. Curious what other names were given consideration.

I think what's missing in the battle to win respect or TMS (or PPD :) are well designed studies. At least, I'm not aware of any. That's the only way to win medical legitimacy it seems to me. It's a tall order, getting physicians, especially surgeons, to accept something that is perhaps not in their best economic interest.

What's that old line? "It's difficult to get a man to understand something when his salary depends on his not understanding..."
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jaya

USA
175 Posts

Posted - 09/01/2010 :  06:19:37  Show Profile  Reply with Quote
as long as the fda isnt involved im all 4 it!
quote:
Originally posted by art

Hey Dr. Dave,

I like it. I can see why you needed to steer clear of PsychoSomatic Disorder, given all the misunderstanding surrounding that term, and given the need for something fresh. Curious what other names were given consideration.

I think what's missing in the battle to win respect or TMS (or PPD :) are well designed studies. At least, I'm not aware of any. That's the only way to win medical legitimacy it seems to me. It's a tall order, getting physicians, especially surgeons, to accept something that is perhaps not in their best economic interest.

What's that old line? "It's difficult to get a man to understand something when his salary depends on his not understanding..."

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guej

115 Posts

Posted - 09/01/2010 :  06:54:47  Show Profile  Reply with Quote
I'm going to be honest, Dr. Clarke, my initial reaction was to cringe when I read the word "psycho". I know it's absolutely, factually correct. It is conditions in the mind that cause physiological changes in the body. I like the term "Disorders" too because it is a wide range of symptoms and so called illnesses that get encompassed with this condition. The only problem is, I just can't see a 40-something year old Wall Street type on the golf course with his buddies saying..."yeah, I had that horrible 2 year debiliating back pain because of PsychoPhysiologic Disorders". Not that TMS is any more acceptable. I don't know how you get around using the word "Psycho". It is what it is.

Maybe you can come up with a medical sounding term that know one understands just by reading it, and then let the doctors explain it gently to them! After all, that's what they do for these non-descript pain syndromes anyway so that there's a code to enter for insurance. No one knows what "myofascial pain syndrome" is until they look it up on the internet. In a nutshell, it's non-descript muscular pain that won't go away, but no one knows the cause or the cure. Same thing for "fibromyalgia". As soon as you put "psycho" in the title, people won't use it because it implies it's in their heads (even though it's true that it's exactly where it starts).

As for studies, Dr. Schubiner did get a paper published on his successful results in treating Fibromyalgia. It did make it into the mainstream. I happend to be scanning the headlines on MSN.com one day, and there it was! Out of curiosity, I read the reader comments after the article, and right away, the usual defensive Fibromyalgia patients bashed him for saying it was all in their heads (which, he specifically explained in the article, was not the case...).

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art

1903 Posts

Posted - 09/01/2010 :  07:26:25  Show Profile  Reply with Quote
I understand your concerns, but you have to call it what it is. You can't call it measles (taken anyway), or plague (although it's so common it is a kind of plague), or roses. It is what it is.

The best way to get this accepted by more people in my view is to win over the doctors. If they come along, the patients will follow. That's why studies, or more studies are needed. Good, hard science will eventually prevail. Until that happens, it's a long, uphill fight.

Edited by - art on 09/01/2010 11:59:56
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Dr Dave

USA
53 Posts

Posted - 09/01/2010 :  09:32:57  Show Profile  Reply with Quote
Appreciate the comments so far. They remind me of the discussion within our ad hoc committee. Other ideas we had for a name focused on Stress Illness and MindBody Syndrome. These lost out primarily over concern about MD acceptance.

Well-designed research will be critical and Dr Schubiner has just received a multi-million dollar grant from the NIH to study the PPD approach in Fibromyalgia patients in a controlled trial vs cognitive behavioral therapy and education (two separate control groups). Results are expected in several years.

The prefix Psycho makes all of us cringe but it is our hope that linking it to Physiologic will first open the door for MDs to use it and then make them think.

We are working on a web site (don't hold your breath, we'll keep you posted) that will include our core principles for diagnosis and treatment. In our collective experience, which is large, this approach is effective and will work for MDs, mental health practitioners and the public.
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Hillbilly

USA
385 Posts

Posted - 09/01/2010 :  11:11:23  Show Profile  Reply with Quote
Dr. Dave,

May I suggest David Barlow at Boston U.? He has written many manuals for practitioners treating anxiety conditions that are widely used today. I don't see much difference in Dr. Schubiner's explanation and Barlow's, nor in their treatment.

http://www.bu.edu/anxiety/dhb/

I hate quotations. Tell me what you know.

Ralph Waldo Emerson
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Capn Spanky

112 Posts

Posted - 09/01/2010 :  14:58:58  Show Profile  Reply with Quote
quote:
Originally posted by guej

I'm going to be honest, Dr. Clarke, my initial reaction was to cringe when I read the word "psycho". I know it's absolutely, factually correct.



While I enthusiastically support and applaud what you're doing, I agree with guej. Anything with the word "psycho" is going to be a huge turn-off to potential patients. In fact, it may have turned me off before I ever gave Dr. Sarno a chance.

Again, my hat is off to you for the good work you’re doing!
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maccafan

130 Posts

Posted - 09/01/2010 :  15:47:35  Show Profile  Reply with Quote
The shower curtain is being drawn back...TING, TING, TING. Sorry, but your new term makes me notice the word Psycho even more. Too bad the word stress can't be used in some way. Everyone uses that word with no problem.

I saw on the news years ago that most doctors think of fibromyalgia as a trash can diagnosis. I think now it must be easier for them to accept because there's a pill that they can prescribe and keep the customers coming back.

People with fibromyalgia are really hurting. I wish so much that more of them would open their minds and listen.

Edited by - maccafan on 09/01/2010 15:52:34
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mk6283

USA
272 Posts

Posted - 09/01/2010 :  22:25:04  Show Profile  Reply with Quote
100 years from now, "TMS" will just be another chapter in a long medical textbook entitled PSYCHOSOMATIC MEDICINE. Call me old fashion, but that is what we are dealing with here and that is the term I strongly prefer. Any effort to promote "PPD" will, at most, just add another chapter to that very important book. Whenever I explain TMS to people, layperson or physician alike, I deliberately use the word psychosomatic. It is nothing to be ashamed of. PM has a long and storied history in medicine, one that will persevere long beyond "TMS" or "PPD", in my opinion. I think efforts would be best spent trying to rejuvenate the field of Psychosomatic Medicine by reincorporating the evidence for the psychosomatic etiology of disease into the existent psychosomatic literature and journals. In recent years, the PM journals and textbooks have, unfortunately, focused their attention mainly on the psychosocial aspects of patient care, which are obviously a very different matter. The solution isn't to break off from the strong foundation upon which this field is built, but rather to try and help steer it back in the right direction in the hope that the name Sarno can one day join that of Freud, Breuer, Adler, Alexander, and others in the mainstream medical literature. Just my opinion.

Best,
MK

Edited by - mk6283 on 09/01/2010 22:50:59
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tennis tom

USA
4749 Posts

Posted - 09/02/2010 :  07:39:40  Show Profile  Reply with Quote
MK x2.

You can rename a pig, as it were, but it's still a pig. The world understands "vaguely" what paycosomatic refers to: "It's in your head". Coming up with a new term will further muddy the waters and cause more confusion for the general public.

I use the term TMS here, because this is the "TMSHelp FORUM" and that is the nomenclature Dr. Sarno uses in his books. Originaly it was Tension Myositis Syndrome or Tesion Myoneural Syndrome and more recently he regirred it to The MindBody Syndrome, conveniently fitting the exisitng acronym. This served to include the non-physical "affective" symptoms such as depression, anxiety, etc. He has also used the term "psychogenic" which is somewhat similar to psychoPhysiologic. Psychogenic is easier to spell and rolls off the tongue better.

If I bring TMS up with someone in pain, I usually tell them to get one of the Good Doctor's books, that it helped me. If they really want to get better they will get the book, I'm certain they seldom do.

When I really wanted to get better I tried everything under the sun, from A to Z as listed in my bio, until I stumbled on Dr. Sarno's little tome "MIND OVER BACK". It was in the Health Section of my local bookstore. I read a few pages in the aisle, it "resonated" and changed my life.

I had back-pain and the title appropriately caught my eye. There were many other books about back pain on the same shelf. I had a strong pre-disposition to accept the theory, since in my callow youth. I had toyed with the idea of becoming a psychiatrist.

When I "seriously" discuss TMS with someone I always refer to it as psychsomatic and they immediately know what I'm talking about.

Doctors offices already know about psychsomatic illness. They are the patients, they covertly roll up their eyes about and give them tranqulizers or anti-depressants. Doctor's offices don't have the time or inclination to treat them because it would seriously back-up the waiting room and people already bitch about appointments not being on time.

I doubt if I've ever had more than 90 seconds of talk-time with a doctor--except on a tennis court. After playing tennis with a lot of doctors I've learned not to trust all their calls, no offense. They are human too. When playing tennis with doctors, I give them a lot of extra slack since they could save my life, I don't want to piss them off.

Well, I'm beginning to ramble and get off-topic here (welcome to internet forums and TMS'ers) but I don't really give a hoot, since thanks to the Good Doctor, I'm no longer a "goodist"--or as good as I used to be. Bottom line, be honest, call it what it is, and what Dr. Sarno also calls it: PSYCHOSOMATIC.

To spread the word do what's done to "sell" anything else, get celebrity endorsements and do PSA's . Get famous people who have been cured, like Howard Stern, Anne Bancroft (Mrs. Robinson, although I think one of my favorite ladies may have passed away), Dr. Andrew Weil and any other cool people like sports stars. If you could get Al Gore who's done a great job of popularizing global warming (or is it global cooling?). He could do a sequel to his Unpleasant Truth movie, "UNPLEASANT TRUTH II : Psychosomatic Dis-Ease".

It will take marketing like anything else you want to sell or change peoples's thinking about. You have to sell the idea that it's "OK to be nutz!". Maybe a catchy slogan like "It's not all in your head--but that's where it starts".

Given that we will be entering an era of rationed health care, I would "market" to psycho-therapists. It's shocking how ignorant the psychs are about something they should be aware of. They are the ones who would be in a position to "profit" and be the most available from a time management standpoint to treat the malady.



DR. SARNO'S 12 DAILY REMINDERS:
http://www.tmshelp.com/forum/topic.asp?TOPIC_ID=6415

TAKE THE HOLMES-RAHE STRESS TEST
http://en.wikipedia.org/wiki/Holmes_and_Rahe_stress_scale

Some of my favorite excerpts from _THE DIVIDED MIND_ :
http://www.tmshelp.com/forum/topic.asp?TOPIC_ID=2605

Edited by - tennis tom on 09/02/2010 09:52:05
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maccafan

130 Posts

Posted - 09/02/2010 :  09:26:12  Show Profile  Reply with Quote
I agree with Tom. Someone who could really endorse it is Dr. Oz with his national tv show. After all he is quoted at the top of the front cover of Dr. Sarno's book, "The Divided Mind".

It reads, "Dr. Sarno brilliantly explores the chasm between the conscious and unconscious minds, where psychosomatic ailments originate." - Mehmet Oz, M.D., coauthor of You: The Owner's Manual.

But I've never heard him even mention this subject on any of his shows and I've wondered why not.

I found a psychologist in the phone book that advertised psychosomatic therapy so I began to see him. It turned out that he wasn't interested in this and wouldn't even scan the Sarno book that I gave him. He said he'd advertised that way only to get the attention of other therapists and mental health doctors. I still don't understand what he meant.

Also I'd like to say that there is nothing wrong with pigs. I'm a vegan because I realise how much they suffer to become hotdogs, etc. and curse words and brunts of jokes. Other than that I really agree with Tom.

Edited by - maccafan on 09/02/2010 09:31:15
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tennis tom

USA
4749 Posts

Posted - 09/02/2010 :  09:59:03  Show Profile  Reply with Quote
quote:
Originally posted by maccafan

Also I'd like to say that there is nothing wrong with pigs. I'm a vegan because I realise how much they suffer to become hotdogs, etc. and curse words and brunts of jokes. Other than that I really agree with Tom.




No offense to pigs, and I have struck that from my post. Although not a vegan, I feel for their plight too, but I still love the other white meat in most any form, pulled, BBQ'ed or doggie style, (but not ears or feet).




DR. SARNO'S 12 DAILY REMINDERS:
http://www.tmshelp.com/forum/topic.asp?TOPIC_ID=6415

TAKE THE HOLMES-RAHE STRESS TEST
http://en.wikipedia.org/wiki/Holmes_and_Rahe_stress_scale

Some of my favorite excerpts from _THE DIVIDED MIND_ :
http://www.tmshelp.com/forum/topic.asp?TOPIC_ID=2605
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maccafan

130 Posts

Posted - 09/02/2010 :  10:22:22  Show Profile  Reply with Quote
Tom, that's the last time I will agree with you on anything.
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tennis tom

USA
4749 Posts

Posted - 09/02/2010 :  10:34:18  Show Profile  Reply with Quote
Some other thoughts on "selling" TMS:

*SEO (Search Engine Optimization). People rely on the internet these days and not libraries or book stores to research stuff. Hire someone who is good at SEO. I hired one to market my business and we now get 13,000 views monthly. I don't know if Austin Gary, the founder of this site, (that Dave has so generously kept alive) is still viewing, but I believe he was an ad-man. He knows TMS inside-out and would be a fitting person to help with marketing.

When I used to google TMS this site used to come up near the top, now wiki does. I'm still here because there is only so much time in a day to web-surf and due to my TMS homeostasis, I feel this site is the most comfortable for me to view and decipher. It feels like a well broken-in tennis shoe to me.

*There are only 2,130 registered members at this forum. There are 6.7 billion people on the planet. TMS savy people are a microscopic minority. The growth potential is limitless.

*Do an info-mercial. For the "stake-holders", those who I assume are in a position to non-profit by it, do an info-mercial on TV. It works great for all kinds of quackery and placebos like magic bracelets and substance-less supplements. Why not try to capture an audience of insomniacs, up in the wee hours due to TMS pain?

You could hawk all kinds of TMS collateral goods: books, videos, cd's, baseball hats, T-shirts ("Do you TMS? or "Are you a Psycho?". Maybe a pleasant Merlot for a little natural stress relief. "These grapes were personally stomped on by recovered TMS'ers, who used to have plantar-fascitis.

That's all folks, sorry for the drift. It must be something in the air. Being on the same block with a Medical Marijuana Emporium sometimes causes me to go off-topic--I think?






DR. SARNO'S 12 DAILY REMINDERS:
http://www.tmshelp.com/forum/topic.asp?TOPIC_ID=6415

TAKE THE HOLMES-RAHE STRESS TEST
http://en.wikipedia.org/wiki/Holmes_and_Rahe_stress_scale

Some of my favorite excerpts from _THE DIVIDED MIND_ :
http://www.tmshelp.com/forum/topic.asp?TOPIC_ID=2605

Edited by - tennis tom on 09/02/2010 18:41:55
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tennis tom

USA
4749 Posts

Posted - 09/02/2010 :  11:00:30  Show Profile  Reply with Quote
quote:
Originally posted by maccafan

Tom, that's the last time I will agree with you on anything.



Yah, I have that affect on a lot of people I'm afraid, but it keeps my x-mas card list short.

[OK, I'm gonna' shut-up now (meaning go play tennis) and give someone else a chance to talk].










DR. SARNO'S 12 DAILY REMINDERS:
http://www.tmshelp.com/forum/topic.asp?TOPIC_ID=6415

TAKE THE HOLMES-RAHE STRESS TEST
http://en.wikipedia.org/wiki/Holmes_and_Rahe_stress_scale

Some of my favorite excerpts from _THE DIVIDED MIND_ :
http://www.tmshelp.com/forum/topic.asp?TOPIC_ID=2605

Edited by - tennis tom on 09/02/2010 11:04:27
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Dr Dave

USA
53 Posts

Posted - 09/02/2010 :  11:38:10  Show Profile  Reply with Quote
Thank you all, again, for the comments and recommendations. The ad hoc group (or perhaps I should now say the PPD Association) considered using the term Psychosomatic but felt this would be an even bigger turn-off for the public and, even more important, most medical clinicians don't regard psychosomatic illness as part of their job description. The term PsychoPhysiologic makes it more difficult to shirk responsibility for diagnosis and initial treatment but we agree there is no perfect term.

We are working with marketing and PR experts to develop a program of education for all three stakeholder groups: the public, mental health professionals and medical clinicians. The medical profession has been aware of this issue for 2500 years (Hippocrates knew about it) but there has been no solution until now. Our group is experienced in relieving PPD/TMS in hundreds or thousands of people and ready to explain our approach. But the TMS term has held us back (2000+ registered here vs 20 million with the condition) and even the dedicated TMSers in our group recognized it was time to move on.
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Hillbilly

USA
385 Posts

Posted - 09/02/2010 :  18:45:02  Show Profile  Reply with Quote
Dr. Dave,

Are you referring to anxiety disorders? What diagnosis(es) count(s) 20 million? What is the source of the number?

I hate quotations. Tell me what you know.

Ralph Waldo Emerson

Edited by - Hillbilly on 09/02/2010 19:48:41
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fadoozle

33 Posts

Posted - 09/02/2010 :  20:23:57  Show Profile  Reply with Quote
Just want to put out there that my immediate connotation with "PPD" is post-partum depression (never called TMS by Sarno but having had it myself I think it's absolutely linked...but that is a a discussion for another thread!).

I am in favor of just leaving it as it is. TMS is the perfect description of what happens in the body in response to repressed rage. The tension, oxygen deprivation--all there. If people in the medical professions want to learn more about it, they can buy the books like everyone else has. Not rocket science IMHO.
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golden_girl

United Kingdom
128 Posts

Posted - 09/03/2010 :  19:15:41  Show Profile  Reply with Quote
Dr Dave, I've bought and read your book, and it seems to me to be in the ~new wave~ of Sarno ideas, and I think your nomination of 'stress illness' to be correct. Other than that, I think TMS (meaning The Mindbody Syndrome) to work, because so many more people are understanding the mine affecting the body and vice versa... but still, stress appeals (!) to EVERYONE and makes sense... that stress can cause illness.

My 2p :)

"F.E.A.R.
Forgive Everyone And Remember
For Everything A Reason"
Ian Brown
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golden_girl

United Kingdom
128 Posts

Posted - 09/03/2010 :  19:19:13  Show Profile  Reply with Quote
It goes without saying that I meant...

"so many more people are understanding the mind affecting the body and vice versa... but still, stress appeals (!) to EVERYONE and makes sense... that stress can cause illness."

but I can't leave it incorrectly..!.! I don't have goodist traits but I try my hardest to be a perfectionist when it comes to spelling and grammar :/

"F.E.A.R.
Forgive Everyone And Remember
For Everything A Reason"
Ian Brown
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