Three milestones for our forum approaching

Hi everyone,

Our forum is about to reach three major milestones. Pretty soon, we will reach 4,000 threads, 30,000 messages, and 1,500 members!

To see what I'm talking about, click on the forums tab near the top of the page to go to the list of all of our subforums. On the right, below the list of everyone who has visited in the last 48 hours, you will see our forum statistics:

Forum Statistics
Discussions: 3,933 ("discussions" is just another word for "threads," and we're close to 4000)
Messages: 28,711 ("messages" is another word for "posts," and we're close to 30,000)
Members: 1,411 (not far from 1,500 people joining our community!)​

I will confess that I check that list quite frequently, and it's pretty exciting to see that we're approaching three milestones all at once. I've been crunching some numbers from Google, and it looks like, in the last five years, searches for TMS are down about 30-50%. It is a testament to the amazing members of this community and to the life-changing truth of the ideas that we discuss that we can manage to grow as a community in these circumstances. We keep the discussions friendly and supportive while respecting all different viewpoints and keeping Dr. Sarno's ideas front and center. It's a beautiful thing.

Anyway, I just thought I'd share the good news.

So which milestone do you think we will pass first? In terms of our mission as a nonprofit and public charity, which of the three milestones do you think is most important?

 

Up to 3970 threads! Almost there....

 

Hey Everyone,

Thanks so much for your kind words and enthusiasm! It's so exciting to see our community growing. I definitely agree with Ellen that the number of members is the most important figure because helping people is what counts. According to Google this website is visited by about 11,000 different people per month, and it is the people who take the time to sign up (and then, even better, share their experiences) who form the core of our Peer Network.

Speaking of the milestones, we are almost to the 4,000 thread milestone! I just checked and we are at currently at 3,991.

I should've known that it'd be someone with business experience like Tennis Tom who would immediately recognize the importance of this statistic

I'll be honest, it's a statistic that I take extremely seriously and that I've spent a lot of time exploring. It indicates difficulties facing online community organization going forward and also indicates some real challenges that the TMS movement faces. After all, in order to help people, we must first reach them, and the quantity of Google searches for "tension myositis syndrome" is one of the best indications we have of the number of people that the entire movement is able to reach. That number appears to be declining.

In terms of why it is happening, I think this is because the TMS movement has always been 95% driven by book sales, specifically, books by Dr. Sarno. Books by other authors are tremendously important once people know about TMS, but in terms of bringing new people in and overcoming their initial skepticism on a large, "mass audience" scale, I believe that that has happened through Dr. Sarno's books.

As we all know, when someone has TMS they immediately tend to "think physical." This is why they need to hear from a medical doctor that everything is OK and that they are not as fragile as they feel. Dr. Sarno's books have been absolutely crucial in reaching people and giving them the courage to open their minds to the idea of TMS. The "Doctor of Medicine" (MD) degree has a tremendous amount of credibility on matters of health.

However, Dr. Sarno's credibility goes beyond that. On the back of all four of Dr. Sarno's books, it mentions how Dr. Sarno was a professor of Rehabilitation Medicine at the New York University School of Medicine. In terms of reaching mass audiences that type of medical authority is crucial. It provides a powerful and irreplaceable anchor of respectability that all TMS books written by non-MDs, to some extent, must rely on.

Unfortunately, when people look for medical books, most people want the most current and up to date books they can find. I know that when I look for medical books I want one that is published within the last 5-10 years that can take advantage of the most up-to-date science. Unfortunately, Dr. Sarno's two best-selling books were published in the 1990s. His best-selling book is now 23 years old, and his second best-selling book is now 15 years old. Consequently, over the years, their Amazon sales rank has been slipping.

I want to emphasize that I'm not talking about what is good or bad, but only what drives Google search volume. What is it that drives someone to sit down and type "tension myositis syndrome" into Google? People currently do this about 2400 times a month, and the question is, what drives that sort of volume? It's an important question for us, because if people can't find us and aren't open to our ideas, how can we possibly help them?

I'm actually quite hopeful about the future, though. Something pretty amazing happened in 2009. There are about a hundred practitioners who, usually through personal experience with Dr. Sarno's work, had independently started using TMS ideas in their own practices. 45 of them first got together in Ann Arbor, Michigan in the spring of 2009.

That same year, two nonprofits were created, one for practitioners and one for consumers. The one for practitioners is known as the Psychophysiologic Disorders Association (It uses the term "psychophysiologic" to indicate that it isn't all in the psyche and that there are consequences in the physiology, meaning that it isn't "all in one's head"). On its board it has Dr. Ira Rashbaum, who is regarded as Dr. Sarno's successor as Dr. Sarno refers all of his former patients to him. It also has Dr. Eric Sherman, one of Dr. Sarno's most trusted psychologists.

The nonprofit behind this website, the PPD/TMS Peer Network, is the one for consumers. Because it is organized by consumers, we call ourselves peers because amongst ourselves we are like a family of TMS in that we all have a very powerful common experience. The question is, what is our role?

Well, I don't think that I have to tell anyone reading this how much good this community can do for the people who find us. I'd like to mention another, equally important benefit we have, though. One of the largest PR obstacles that the TMS movement faces is that, to an outsider, it might look like all of the TMS books and professional services rendered are all about making money off of desperate people. While we know for a fact that this isn't true, we had a consultation with an elite PR consultant who said that this is one of the main challenges our movement faces. I am quite sure that he is right. People will look at websites of anyone who is making money off of TMS and immediately be skeptical, especially if the sponsor of the website doesn't have a great deal of formal training and education (i.e. a doctor or a psychologist).

However, as a nonprofit, this is where we have an extremely important role to play. Our board consists only of people who make absolutely no money off of TMS and this is core to our identity as a peer network. I personally have made a pledge not to accept any money or gifts related to my work on TMS in order to maintain my neutrality. Furthermore, we are organized as an IRS-certified 501(c)(3) nonprofit public charity. To skeptical members of the press this certification, combined with a great deal of transparency in our disclosures, goes a very long way in letting people know that this is not a money-making scheme and that many people, who have nothing financially to gain, care very deeply about it.

Given all of this I think that everyone reading this has a very important stake in this organization and I thank you all very much for your support. If it weren't for you folks I would have no reason to continue wanting to do this, but with such a vibrant and caring community to be a part of, I always know that I want to give this community the very best it can possibly have. I just wish that there was more time during the day to do it. However, I am tremendously encouraged by the growth we have had and plan in some sense to make this nonprofit my life's work. I fully intend to continue building it for the rest of my life.

What does all this mean going forward? I think we will have to be flexible and creative in terms of getting the word out. In the fall Becca and I plan to undertake a massive plan of Search Engine Optimization to help our content reach more people. As a 501c3 nonprofit that is trusted by many people I think that we should have great success with this, and then we can use this position to help other individuals and organizations, primarily practitioners, promote their contributions.

This brings up a vital point which is that the practitioners' role in all of this is crucial. I believe that they need us far more than most of them know to protect them from reputational attacks from those who are angered by the mention of a non-physical cause of their symptoms (for example, from people with fibromyalgia who often will attack them viciously and personally. It is stunning how angry these people can be when they don't accept TMS). This is what I was saying about money above, and the importance of being a nonprofit.

However, far more than they need us, we need them. Without licensed practitioners who can bring the authority of professional respectability and science to the table, no one will take us seriously. So it is really going to have to be a team effort. This is why, when I work for the TMS Wiki, I spend about 15-20 hours a week providing services to practitioners. We need to do our best to support them because without them, our movement does not have a future, as the numbers above indicate. This would be an absolutely terrible outcome because we all know how horrible it is to live a life crippled by TMS without knowing how to actually cure it.

This is why it is so important that we are really beginning to turn into a TMS movement. We may be decentralized, but there is no one in the movement who hasn't made enormous sacrifices because they care deeply about TMS and want to help people recover from it. While different people may have different approaches, I am continually impressed with how people are willing to put aside their differences and work for the common good to help spread the word about this life-changing diagnosis. My life was absolutely transformed by this discovery and if your life hasn't been transformed by it yet, I'm sure it soon will.

 

Hi Ellen,

Thank you for your very-well reasoned reply. As an economist, I agree with what you are saying. Nonprofits play vital roles in our society and need to be able to attract talented employees. In general, I'm not at all averse to nonprofits paying employees a reasonable wage.

On the other hand, it takes a very large nonprofit to support a professional staff. In contrast, I tend to have conservative estimates about what we can do in terms of fundraising. Right now, from the right hand side of the main forum page, you can see that we have about 70 logged-in visitors visiting our forum every two days. The 1% rule suggests that a small percentage of our visitors will donate:
http://en.wikipedia.org/wiki/1%_rule_(Internet_culture)
Suppose we are able to get 10% of our visitors to donate and they each donate $40 per year. This would imply an annual budget of $280.
In the future I hope to put significant effort into fundraising, but from the beginning my philosophy has been that we can build a sustainable nonprofit using the model of a volunteer-run "peer network" because doing so will allow us to keep our expenses low. So far, there have been three TMS nonprofits in existence so far and we are the only one that I am aware of with a regular operating surplus (i.e. we're able to put money away).

I am comfortable with the idea that we can probably raise on the order of one or two thousand per year, going forward and in the long term. So far we have been able to achieve this because there have been several large donors interested in making a substantial contribution to ensure the stability of our nonprofit. Prudent financial management implies, I believe, assuming that these large donations may not continue, so spending the Peer Network's money on staff doesn't seem like a good idea. Further, I think that I can be a far more effective fundraiser if I say that donations will go directly to either operations, a legal fund, or an endowment (rather than my and uncle Sam's pocket!)

For the last five years or so, I've been putting in more than 40 hours a week to building this nonprofit (I'm involved in so many different projects that most people won't see most of what I do). Therefore, when we receive donations, I really want that money to go toward our expenses. We will need money to grow, and when you have a small budget, every dollar counts. Therefore, it really doesn't feel like a sacrifice to me to work as a volunteer rather than an employee.

In addition, there are other organizations, such as the Pain Psychology Center, that I hope will do a tremendous job of spreading the word about TMS. I believe that they will be attacked by people who think that they are only doing it for the money. (See the comments on this post, for example. Responses like that are actually quite common.) I know how committed Alan and the other practitioners are to helping people and I know that everyone with income related to TMS is generally taking a financial hit, but it can be hard to get people to listen to that idea. If I can say that I'm not making any money off of TMS, I think that that enhances my credibility. Upton Sinclair wrote that “It is difficult to get a man to understand something, when his salary depends on his not understanding it,” and I think that a core contribution that the peer network can make is that our salary does not depend on us believing in TMS. It will take a real team effort to spread the word about TMS, and I think that being the ones who can't be accused of a financial conflict of interest is a very important role for the Peer Network.

Given all of the above, I gladly pledge to not accept any money for the TMS work that I've done. If the nonprofit does eventually get large enough to support a staff, I would be willing to take a below market rate salary to allow me to devote more time to the organization (below market rate = making less than my skills would allow me to make in a job that wasn't related to TMS).

If you look closely at the numbers in this post, you may see why it doesn't feel like a sacrifice to me to make this pledge. However, when one looks at the benefits of making the pledge, I hope you can see why I want to make it. I derive a tremendous amount of life satisfaction out of my involvement in the TMS community, and service to this organization greatly enriches my life. The work is challenging and, all my life, I have always wanted to build something that was truly special and that truly mattered. This nonprofit is my opportunity to do that. I love the work because it is so incredibly varied and because, after more than 10,000 hours, it feels great to use the highly specialized skills and knowledge that I have built up.

With all of that out of the way, I have some great news. We're almost to achieving the third and most important milestone of 1,500 members. Here are our new stats:

Discussions: 4,249
Messages: 30,593
Members: 1,496​

Just 4 more members to go!

In terms of financial matters, if anyone reading this would like to make a financial contribution to help sustain our community, your donation is greatly appreciated and helps ensure the nonprofit's future growth. Our donation page, which will be more prominent after an upcoming home page redesign, is at:
http://www.tmswiki.org/donate.html
There are many nonprofits out there, and the ones that take in the most money tend to have mammoth budgets. It can be hard to assess whether your donations are being spent efficiently. However, for anyone reading this, you probably know how important the work is that we do and that it can transform lives. Financial contributions are an important element that enables the community support (we've got to keep the server and the Fuze account going somehow!), and all donations go directly to operating expenses.

If you haven't already done it, joining our Amazon Smile program is also a great way to contribute: http://www.tmswiki.org/ppd/AmazonSmile

 

Many thanks for the generous donation, Andrew!

I try to benchmark this organization off of other similar organizations and what you describe could even be considered a best practice. We'd need to think about the details, but I like the idea of recognizing people who help provide the financial support we need. All contributions help, no matter how large or how small.

By the way, in terms of our milestones, people seemed to agree that the third milestone, of reaching 1500 members, was the most important, because it is an indication of how many people we are able to help. Well, I'm happy to report that we are at 1499, and I just emailed someone who had a question about how to sign up. Not long before we get to welcome our 1500th member!

 

Sure enough, we now have our 1500th member! Welcome, all!