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Dr Dave
USA
53 Posts |
 Posted - 09/04/2010 : 08:31:21
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I like stress illness, too, of course. (That's why my web site is stressillness.com.) But our group, which has Dr Schubiner and the founder of the TMS Wiki among others and was advised by a group of 6-8 marketing pros, felt it wouldn't be as acceptable to the MD community. We all felt we had to have the MDs on board for the concept to take off.
I should add that the tag line we came up with for the PPD Association is as follows and we hope it mitigates some of the concerns: "Advancing the diagnosis and treatment of stress-induced medical conditions." So we got the word stress in there, just not in the name.
The estimate of 20 million people with PPD comes from a study at Group Health Cooperative of Puget Sound, a large HMO. They had about 10% of their adult membership who were frequent users of medical care with limited organ-based disease. There are probably many more who have a milder affliction and don't bother going to the doctor.
The discussion on this forum very much parallels the discussion in our group which went on for five months. The big issue with Tension Myositis Syndrome is that there is no scientific evidence for myositis (muscle inflammation). The issue with Tension Myoneuralgia is that it fails to include things like nausea, vomiting, dizziness, ringing in the ears, itching and other non-pain PPD symptoms. The problem with The MindBody Syndrome is that our marketing/PR advisors thought it was too "New Age" and just wouldn't fly with the MD community. |
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RageSootheRatio
Canada
430 Posts |
Posted - 09/04/2010 : 13:15:07
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Hi Dr Dave, thanks for providing some info and asking for feedback! Here are some of my thoughts:
Trying to find the right name for the various "stakeholders" is certainly a large challenge. I do know that if I had been told I had "psychophysiologic headaches" I would have felt that was just another way of someone telling me it was "all in my head," blaming me, and a way for my GP to shunt me off to yet another psychiatrist who couldn't help me (and the 10 or so that I saw basically made things worse, frankly!)
(BTW, PPD also stands for "Paranoid personality disorder". - lol... and given my reaction to the name PSYCHOphysiologic Disorder" maybe it's not too far off ! ) )
I have had great success w/ Dr Sarno's approach for which I will forever be grateful, and the name "TMS" worked for me, but I certainly understand why a name change is in order at this time. I quite like Dr Scott Brady's term "Autonomic Overload Syndrome", which seems descriptive yet non-blaming.
I wonder about "stress illness" being a little too generic? .. (I do like it as your web site name!) There's a million people selling all kinds of stress-reduction programs / approaches, but as Dr Sarno has pointed out, you can meditate til the cows come home, but that won't necessarily change the pain syndrome.
Anyway, the term "PsychoPhysiologic" doesn't work for me, but then I'm already "on the bandwagon" so in that sense it also doesn't matter to me what it's called anymore. One thing I wonder, by using that name, PSYCHOPhysiologic, is whether you will be trying to get it into the next DSM? And what insurance code # you are thinking this might fall under?
It woud be interesting if your group of marketing people could take it to the next stage by doing a survey where you could get some real numbers as to what name would work best for your MD stakeholders.
Thanks again for posting and I look forward to hearing more updates about the group's advancements! |
Edited by - RageSootheRatio on 09/04/2010 13:18:19 |
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EileenTM
92 Posts |
Posted - 09/04/2010 : 17:50:01
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I visit this forum fairly frequently and post occasionally. I am a market researcher by profession so I have alot of experience with the naming, branding and marketing of new products and services.
I like TMS because it works for me. However I see the need to come up with a better name to educate patients and doctors. I am concerned about the use of "psych" because no one wants to think they have a "mental illness" or "psych" problem. However "stress" is socially acceptable. Everyone talks about being stressed. What about something like Physiologic Stress Syndrome. PSS. That would also cover other non-pain related symptoms.
Plus it clearly links the physiologic manifestation with the stress that is the root cause.
I am glad to see that more and more physicians are accepting this new idea. My husband mentioned the other day how much money this country could save in medical costs if TMS were mainstream.
Probably enough to then devote to issues like poverty, hunger, education, etc.
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HilaryN
United Kingdom
879 Posts |
Posted - 09/06/2010 : 15:38:11
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PPD is fine by me.
It's true that the psycho word has a big stigma - here in the UK there is a campaign to change that:
http://www.time-to-change.org.uk/
I've used the term "Somatization disorder" when talking to doctors, because it seems to be a currently recognised medical term and seems to correspond to the description of TMS.
It still has a stigma, though - when I told my doctor my RSI was Somatization disorder, she said, "But your pain was real!" Hey ho, still some education to do there, and it's hard to do in a 10-minute slot, but we'll get there one day. 
Hilary N |
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Fox
USA
496 Posts |
Posted - 09/07/2010 : 11:13:10
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| PPD sounds perfect for the purpose of wider professional acceptance. Will miss the beloved acronym TMS but it sounds like this must be done. Even Sarno had become unhappy with TMS - as I remember - several books ago. |
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Dr Dave
USA
53 Posts |
Posted - 09/08/2010 : 17:59:53
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The latest posts are much appreciated. Eileen's Physiologic Stress Syndrome certainly captures the essence and we didn't discuss that particular synonym but it won't fit into most MDs vocabulary quite as easily as PPD.
I have been in touch with the chair of the committee that is revising the relevant section of the DSM (the bible of psych diagnosis if you're not familiar) both by email and in person. He hasn't grasped that people with PPD actually can be successfully treated and, consequently, the direction they are going to revise the Somatoform Disorders section will not help advance this field. They published their draft recently to ask for comments and, to me, it was embarrassingly bad. (I blogged on this a while back.)
Our group is hoping that MDs can learn how to explain to people that having a PPD means only that you have so much stress that your body is feeling it. This is no different in principle than getting butterflies in your stomach before a job interview or a cold sweat when being followed in a dark parking lot. Going one step further, most of my PPD patients handle stress much better than the average person, they just happen to be dealing with a stress level that would bring the average person to their knees. In any case, one of the goals of the PPD Association is to teach this to health care practitioners so neither they nor their patients will be embarrassed about it. (If we MDs can learn to ask about alcohol, drugs and sexual orientation we should be able to handle this one.) |
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Monte
USA
125 Posts |
Posted - 09/09/2010 : 11:24:03
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iTIPS
Inner Tension Induced Pain Syndrome
Let's get with the times and avoid the negative stigma's
Monte Hueftle
monte@runningpain.com |
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Floweringsoul
USA
2 Posts |
Posted - 09/09/2010 : 21:23:28
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Physiologic Stress Syndrome. PSS. |
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Floweringsoul
USA
2 Posts |
Posted - 09/09/2010 : 21:30:33
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Sorry, hit enter too quick! I meant to post that I liked Eileen's idea best of all, "Physiologic Stress Syndrome. PSS". I really don't like the Psychophysiologic one! Hate the psycho part. I've never liked the TMS one either and can never remember what it even stands for. I am so thankful that this disorder is getting more attention no matter what it's named! I think this will be benefit soo many people and I wonder what widespread recognition of the 'problem' will do to the # of future cases? Will the 'brain' find something else to get people's attention once the whole world is on to it's shenanigans?
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Hillbilly
USA
385 Posts |
Posted - 09/10/2010 : 06:13:41
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Monte,
What I think the doctor is trying to do is encompass the various symptoms that accompany an overactive nervous system due to stress. If a person has chronic diarrhea, iTips isn't gonna work on a billing form because the patient is not complaining of chronic pain.
I hate quotations. Tell me what you know.
Ralph Waldo Emerson |
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Fox
USA
496 Posts |
Posted - 09/10/2010 : 14:17:46
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| I think that PPD would be accepted best by medical, psychiatric, and psychologist professionals. I thought that was what we were trying to accomplish - wider acceptance in the medical/rehab/treatment community - so more folks can exposed to and can benefit from Sarno's concepts. As has been said, the physiologic balances out the psycho so there is really not much stigma attached. TMS is a physical response to a psychological problem - so PPD is very descriptive as well - and pscyho should go first in that the psychological problem generates the physical problem. Sarno's concepts are based on Freud's ideas, so you would have to be sticking your head in the sand to leave our the psychological part of the new term for TMS. |
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Fox
USA
496 Posts |
Posted - 09/10/2010 : 14:22:04
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| Last sentence of my last message should say "to leave out" not "to leave our" --- perfectionism in action!!! |
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Fox
USA
496 Posts |
Posted - 09/10/2010 : 15:26:47
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| One more thing - I don't understand the negative stigma thing associated with psychophysiologic. It isn't being suggested that we change the term TMS to the name of Hitchcock's famous movie. It won't be called just PSYCHO. Could someone explain how the term psychophysiologic is not up to date or is somehow stigmatizing. To beat a dead horse, I say again that this suggested new term is perfectly descriptive of what the symdrome is and shouldn't be avoided because we fear to let the word out that our disorder is generated by our brains. I have no shame or guilt regarding why I have pain. When the medical professional or the suffering patient digs into the essence of TMS, they are quickly going to find out anyway that it is a psychological disorder (and I think it is worthy of inclusion in the DSM), however, it is not just "in our heads". |
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Peg
USA
284 Posts |
Posted - 09/11/2010 : 05:49:22
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Hi all,
Thanks for the feedback.
Dr. Dave has put a tremendous amount of work (and continues to) into these efforts. I appreciate all he is doing to advance the goal of changing medicine for the better.
We really struggled over this decision. One of the suggestions made by the marketing specialists which I was partial to, was:
Global Alliance of Patients and Practitioners for the Advancement of Treating Psychophysiological Disorders
For obvious reasons, they thought this was too long and wouldn't lend itself to an easy acronym, but I liked it's inclusiveness. One of the things that sets us apart from the numerous other groups with similar goals, is that we hope to have a large representation of successful patients involved. Of course the most important difference between our organization and the others is that we offer a CURE.
I tried to change it around to see if it could work and wondered if we could just use: Global Alliance of Patients and Practitioners (GAPPs). Then use the Tag Line: Advancing the science, understanding and treatment of stress induced disorders.
Ultimately, we needed to find something that would be accurate, inclusive and credible.
Fox puts is well I think:
>"this suggested new term is perfectly descriptive of what the syndrome is and shouldn't be avoided because we fear to let the word out that our disorder is generated by our brains."
Dr. Dave, thank you for this:
>"most of my PPD patients handle stress much better than the average person, they just happen to be dealing with a stress level that would bring the average person to their knees."
Even if a good deal of our stress is self created by our negative (and false) belief systems, our coping mechanisms that were developed in reaction to dysfunction, our reactions to life based on old wounds and habitual thought patterns, the compassion you have shown your patients, has I'm sure been very healing.
Best,
Peg
In questions of science, the authority of a thousand is not worth the humble reasoning of a single individual. Galileo Galilei |
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EileenTM
92 Posts |
Posted - 09/12/2010 : 15:22:31
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Peg, I like where this is headed. I do think that the word "cure" should be featured, as many organizations are seeking cures for various illnesses, but we have the cure already. That is very powerful from a marketing perspective and the key benefit that everyone seeks.
So how about something like "Global Alliance for the Cure of Stress Induced Disorders: A partnership of patients & practitioners"
Also, you talk about TMS sufferers as if we are somehow different from others. That our symptoms come from certain dysfunctions,etc.
Keep in mind that Dr. Sarno says that TMS appears to be universal to the human condition, except perhaps in certain less "advanced" societies. Once I learned about this, I was amazed to look around and see that almost everyone I know currently suffers or has suffered from some form of TMS.
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Dr Dave
USA
53 Posts |
Posted - 09/19/2010 : 15:27:10
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The recent posts have continued my education about the range of views out there and I'm grateful.
The group that reached consensus around PsychoPhysiologic Disorders focused mainly on words that would bring physicians and other health care professionals on board. The name choice is critical because physicians are sensitive to the distinction between groups that base their ideas on evidence and groups that do not. Unfortunately, the Tension Myositis concept lacks evidence for myositis (muscle inflammation) and, consequently, was dismissed by most MDs. Most of the TMS ideas were great but the name (and the idea about oxygen deprivation in tissues) caused TMS to be lumped in with the flakes and wackos even after it was changed to tension myoneuralgia.
The word "cure" is another word that causes MDs to be suspicious. We do often relieve symptoms in PPD but frequently the underlying issues are not resolved right away making it presumptious to speak of a "cure." Global Alliance is certainly what we hope to be, but also make MDs wonder if the group is more interested in their agenda than in evidence. As you can see, it doesn't take much to get classified by MDs as not interested in evidence.
The PPD Association is determined to gain acceptance by evidence-based practitioners. We want them and the public to understand, as Eileen pointed out, that anyone can get a PPD if they experience enough stress. We also want people to know that stress is rarely, if ever, self-created. False beliefs about yourself are generally put there by someone else. Most of my patients would be regarded as heroic by anyone who knew their full story (just pick any of the four dozen stories in my book and I'm sure you will agree.) It's a dream, but someday the Psycho part of PPD may come to signify, accurately, someone with tremendous mental toughness and determination in the presence of adversity that was not of their own making.
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art
1903 Posts |
Posted - 09/20/2010 : 09:12:11
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Dr. Dave,
That's all quite nicely put. When you mentioned the new DSM I got all excited to think this might actually find its way in. Too bad I had to read on.
The irony is there's so much in the DSM that's no more than opinion-based as it is. The psychiatric establishment infers a certain illness based on a set of clinical criteria, but there's nothing particularly scientific about the process it seems to me. It's been a long time since I thought about this stuff, but really when you get right down to it what is the difference between so-called conversion disorder and TMS (PPD)? If the psychiatric establishment is so concerned with evidence, conversion disorder is just as lacking as TMS/PPD...At least with respect to the latter, there's a reasonable mechanism to explain symptoms.. |
Edited by - art on 09/20/2010 09:13:19 |
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New name for TMS
