RefluxMD - using the Internet to educate and connect patients

I'm not sure what to make of this new website, but thought to post a link here for infomation.

RefluxMD is a one-stop resource for help with gastroesophageal reflux disease, or GERD. Our goal is to empower people with reflux disease to take control of their health, to make informed choices about their treatment, and to find solutions that work for them.

Post Edited By Moderator (stkitt) : 9/19/2012 9:49:28 AM (GMT-6)

Hi stkitt,

An interesting concept though, as I am aware of a number of a number of moves, both in the private and public sectors, to increasingly use the internet for monitoring various long term conditions.

eg,
"IP Group has committed to invest up to £0.5m in Oxehealth, an innovative medical software company which has been spun-out from Oxford University's Institute of Biomedical Engineering (IBME).

This is the second IBME spin-out that IP Group has funded since acquiring its stake in Technikos LLP in January 2011. The company's initial focus will be to commercialise a novel technology that will enable a webcam to monitor the vital signs (heart rate, respiratory rate and oxygen saturation) of patients in artificial light, without the need for any additional hardware. "

Edit:  I have been in contact with the developer of this site and they will have features that are free so you do not have to participate in any of the features that require a fee unless you choose to.  Also this site is under construction so you may want to watch for more as it blossoms into a resource site.

Kindly,

Kitt

Post Edited By Moderator (stkitt) : 9/20/2012 5:04:02 PM (GMT-6)

hi rob, I took this site at face value and posted a link here, as it seemed to be backed by some quite well known Drs in the field of gerd and looked to me to have good intentions.
I had no idea they were selling something.
I originally picked the site up from a newsfeed on ibsgroup. [another US based discussion site- won't risk a link, nervous lol]
As I said in my original post, "I am not sure what to make of this new website". I had no idea this would cause problems.

If it is deemed that controversial perhaps the thread should be censored?

hi rob, no problem holding me to account for my actions.
I want to see the back of this awful illness as much as anyone else, and will do what I can to help.

My great hope at the moment is that the Endostim clinical trial reporting in March 2013 is positive, and that their technology is able to help us all, at least until something better comes along.

phil

hi rob, check out the Endostim thread,

https://www.healingwell.com/community/default.aspx?f=45&m=2438608

Good Evening,

I was in contact with Dan today and he assures me that they have free membership  on their site so you do not have to purchase the additional offerings as free access gives you permission to use much of the site. 

This site is under development so I put back the link in Phil's first post and let us see how the site develops down the road. 

It may be a good resource down the road but it will not be a full fledged health forum as HealingWell is a Chronic Illness Community, offering support and resources.  HW covers many disease processes and illness and is a peer support forum.

Kindly,

Kitt

 

Dan,
So what exactly does RefluxMD offer? I ask that honestly. I'm not trying to pick a fight or anything. I read on your website about what you call the "Pasadena Protocol" that you guys (or your doctors) came up with. I agree with the idea that PPI are over-prescribed and that the drug companies are making a killing off us. It seems to me like your general goal is to steer people away from PPIs and to educate them about alternative treatment options. However in terms of education, I feel like we do a pretty good job in this forum (and others) of educating and informing each other about the various alternative methods and new techniques for treating our GERD. LINX and other endoscopic experimental procedures have been discussed at length. Where else can you go on the internet at hear directly from people who have undergone some of the first LINX procedures? Recently, I've received great advice from forum members and moderators about sleeping positions and best ways to sleep inclined. My doctor doesn't know which brand of bed wedge is most comfortable, or how a wedge compares to an adjustable bed. But when I ask the question here I can get dozens of responses based of years of evaluating different products. Is one of RefluxMD's goals to try to get us to migrate to your forums?

Like any business, your end goal is to make money (even if you aren't doing that now). It looks like you have a team of "heavy hitters" that will have to be paid somehow. If all you're doing is providing education to your visitors (because technically you "do not provide medical advice"), what will premium payers for. Last I checked, vast majority of support groups and education on the internet is primarily free. Flawed business plan?

By the way, I noticed that Dr. Demeester is on the advisory board of the pH monitoring company (Restech) that you advertise on your home page. How does that relationship work? Does he get paid by both RefluxMD and Restech? Will RefluxMD get paid by diagnostic labs or surgeons as RefluxMD refers patients to those services? It all seems a little messy as well as potential for conflicts of interest.

Hope that doesn't sound too harsh. Just my thoughts.

Post Edited (robspect) : 9/21/2012 1:17:59 AM (GMT-6)

I visited this site a couple of weeks ago and I was horrified. They way over-state the prevelence of GERD in comparison to other sources. They grossly distort Barrett's, for example, giving the frequency of deaths from esophageal cancer without giving age at time of death. It clearly was designed to benefit surgeons. It is not research-based, not on the topic of Barrett's.

Post Edited (sunbeam48) : 1/17/2013 4:46:12 AM (GMT-7)

No, your information on Barrett's Esophagus is grossly distorted. As I was reassured by my GI doc, esophageal cancer is rare. People here have stated that their doc has NEVER seen a case. People who do die of esophageal cancer are usually at the end of their life span. Perpetuatiing this distortion is a disservice to all.

I can see the benefit of this type of discussion, since it is obvious that there are differing opinions on the subject. For me, all I want to get is more people talking about the issue so I can see what options I have in treatment.

I have suffered with acid reflux and GERD for some time. I really want to know how to control it for the long run, not just day to day. Will there be patient forums or discussion boards like WJF said -- to ENGAGE us? Can we ask questions that can be answered by doctors?

Any info I read online, I take with a grain of salt. But I think sometimes having your individual concern can be really important.

Thanks in advance.

RS

FYI. I am not really here to promote but to clarify. I want these forums to flourish since they are essential to the reflux disease awareness effort. I initially jumped on to help deal with some perception issues around RefluxMD. I am totally willing to join the discussion here if people have specific questions. I am not a physician nor a sufferer but as you could imagine I know many sufferers and I got involved because I felt that the population needed to know about the myths and truths of reflux disease.

Ok, I have copied verbatim our main article for people looking into Barrett's. Let me know what you think is problematic with this:

Barrett’s esophagus is a pre-cancerous condition that increases the risk of esophageal cancer when compared to other patients with GERD. If you have been diagnosed with Barrett’s esophagus, the cells in your esophagus have changed, indicating that you have an increased risk of esophageal cancer, and you should be in active “surveillance mode.” The management and treatment of this condition is controversial. It is imperative that you have an understanding of Barrett’s so that you can take control of your disease and help select the management program that is best for you.

In patients with Barrett’s, GERD symptoms can be highly variable. The condition is a consequence of significant, longstanding reflux and symptoms are usually severe. However, in some cases, they may actually be quite minimal, particularly for those using acid suppressive medications.

RefluxMD believes that patients with Barrett’s esophagus require expert management. RefluxMD’s medical advisors have identified a small group of GERD physicians who meet the highest standard and follow the Pasadena Protocol. We term these physicians Refluxologists. They are experts in the management, diagnosis, and treatment of GERD, including Barrett’s esophagus and its treatment strategies and options. You can begin your search for one of these specialists using our Find a Physician directory.

Barrett’s Esophagus: What Does It Mean To You?

With the diagnosis of Barrett’s esophagus, cancer risk becomes very important along with symptom control. This represents a significant change in focus from the other three stages of GERD. Esophageal cancer must be avoided.

Fortunately, Barrett’s should not be feared, but it must be managed correctly. In actuality, the likelihood of developing cancer is small. You have up to a .5% chance per year of developing cancer, which translates to a 10% risk over 20 years.

It is essential that those individuals with Barrett’s esophagus undergo endoscopy every 1 to 3 years in order to reevaluate the extent of disease. Biopsies are taken which will determine whether your condition is “stable” or if it has progressed to a condition called dysplasia, indicating an undesirable cellular change. Dysplasia carries with it a higher risk of cancer when compared to Barrett’s.

Barrett’s Esophagus: Management Strategies And Treatment Options

As discussed earlier, the management of Barrett’s is controversial. There are three treatment strategies available:

Medical management, primarily with PPIs;
Surgical procedures which restore the barrier to reflux, and;
“Ablative” procedures that “burn away” the Barrett’s tissue. Ablation is combined with either surgery or PPI therapy.
The implementation of any of these therapies does not change the need for periodic surveillance endoscopies as discussed previously.

Medical Management
Acid suppressive PPIs control symptoms, but do not prevent or even reduce the reflux. The chemicals (carcinogens) in stomach juice that are responsible for the progression of Barrett’s to cancer continue to bathe the lining of the esophagus, including the area of Barrett’s tissue. To date, RefluxMD has found no credible evidence that acid suppressive drug therapy prevents the progression of Barrett’s to dysplasia and ultimately esophageal cancer. In addition, PPI therapy also has effects that, conceivably, might promote the development of cancer in Barrett’s esophagus.

Surgical Procedures
The surgical approach reconstructs the dysfunctional LES, improving its barrier function to reflux. This actually stops the reflux which prevents the carcinogen in the stomach contents from reaching the lining of the esophagus. With a successful anti-reflux procedure, there is likelihood that cancer can be prevented. Also, the symptoms caused by reflux are resolved, eliminating the need for acid suppressive medications, including PPIs. As with any surgical procedure there are risks and side effects that must be balanced with the potential benefits. RefluxMD stresses that by understanding these aspects of anti-reflux surgical procedures, an informed choice of therapy can be made.

Ablation
Ablation means directly burning away the lining of the esophagus involved with Barrett’s tissue. This is usually used for tissue that has progressed beyond Barrett’s to dysplasia. After the affected area is treated, the esophageal lining grows back to its original normal state in hopes of decreasing or eliminating cancer risk. However, ablation does not stop the reflux and GERD symptoms continue, requiring continued PPI therapy or an anti-reflux surgical procedure.

Understand Your Choices

Although seemingly complex, you should fully understand all of these options and strategies for the management of Barrett’s esophagus. RefluxMD offers many resources to answer your questions and assist you with your decisions. Take control of your disease. The final choices and decisions must be made by you.

My comments are in bold, the text from WebMD is in italics.   Barrett’s esophagus is a pre-cancerous condition that increases the risk of esophageal cancer when compared to other patients with GERD. If you have been diagnosed with Barrett’s esophagus, the cells in your esophagus have changed, indicating that you have an increased risk of esophageal cancer, and you should be in active “surveillance mode.” The management and treatment of this condition is controversial. It is imperative that you have an understanding of Barrett’s so that you can take control of your disease and help select the management program that is best for you.   Could clarify here:   potential for healing (cells do not go away, but healing may occur around Barrett’s site; repeat testing may find no Barrett’s since new sample will   likely be taken from a at least slightly different location in the esophagus). In patients with Barrett’s, GERD symptoms can be highly variable. The condition is a consequence of significant, longstanding reflux and symptoms are usually severe. However, in some cases, they may actually be quite minimal, particularly for those using acid suppressive medications.   This statement does not correspond with my personal experience.   I have Barrett’s.   At the time of this diagnosis I had not been on   a PPI for over a month, had been on one for three months earlier that year.     My GERD symptoms began just 5 months prior to this testing.   RefluxMD believes that patients with Barrett’s esophagus require expert management. RefluxMD’s medical advisors have identified a small group of GERD physicians who meet the highest standard and follow the Pasadena Protocol. We term these physicians Refluxologists. They are experts in the management, diagnosis, and treatment of GERD, including Barrett’s esophagus and its treatment strategies and options. You can begin your search for one of these specialists using our Find a Physician directory. One purpose of this site is clearly to solicit referrals for this group of physicians.   I googled “ Pasadena Protocol” and got nothing but links to RefluxMD and some joke.   I’m thinking if it were a protocol that this physician group would like to see widely used by others, it would be mentioned somewhere on the internet.   Maybe it is a protocol they plan promote through this site, and charge others for their maximal benefit? Barrett’s Esophagus: What Does It Mean To You? With the diagnosis of Barrett’s esophagus, cancer risk becomes very important along with symptom control. This represents a significant change in focus from the other three stages of GERD. Esophageal cancer must be avoided.   This is perhaps the most offensive statement, designed to be very frightening.   This is where a responsible source would explain that cancer of the esophagus progresses very slowly.   Most people diagnosed with Barrett’s die of other causes, not esophageal cancer.   Most have reached the end of the average life span. Fortunately, Barrett’s should not be feared, but it must be managed correctly. In actuality, the likelihood of developing cancer is small. You have up to a .5% chance per year of developing cancer, which translates to a 10% risk over 20 years.   This statistic was not computed accurately.   You don’t add risk like that.   Here is an explanation:   http://wow.joystiq.com/2010/01/13/drop-chance-probability/   This statement inflates a person’s risk of esophageal cancer. It is essential that those individuals with Barrett’s esophagus undergo endoscopy every 1 to 3 years in order to reevaluate the extent of disease. Biopsies are taken which will determine whether your condition is “stable” or if it has progressed to a condition called dysplasia, indicating an undesirable cellular change. Dysplasia carries with it a higher risk of cancer when compared to Barrett’s. Barrett’s Esophagus: Management Strategies And Treatment Options As discussed earlier, the management of Barrett’s is controversial. There are three treatment strategies available: Medical management, primarily with PPIs; Surgical procedures which restore the barrier to reflux, and; “Ablative” procedures that “burn away” the Barrett’s tissue. Ablation is combined with either surgery or PPI therapy. The implementation of any of these therapies does not change the need for periodic surveillance endoscopies as discussed previously.   This should specifically state that Barrett’s most often does not progress.   There is no need for surgical treatment in most cases. Medical Management Acid suppressive PPIs control symptoms, but do not prevent or even reduce the reflux. The chemicals (carcinogens) in stomach juice that are responsible for the progression of Barrett’s to cancer continue to bathe the lining of the esophagus, including the area of Barrett’s tissue. To date, RefluxMD has found no credible evidence that acid suppressive drug therapy prevents the progression of Barrett’s to dysplasia and ultimately esophageal cancer. In addition, PPI therapy also has effects that, conceivably, might promote the development of cancer in Barrett’s esophagus.   This is in fact a controversial statement.   Dr. DeMeester was involved in a study reported in mass media in 2011, that supported this statement.   There was a study reported in 2009 with the opposite results:   PPI’s lower cancer risk.     The NY times published the most recent overview I found:   http://well.blogs.nytimes.com/2012/06/25/combating-acid-reflux-may-bring-host-of-ills/ They made no statement about PPI’s either increasing or decreasing esophageal cancer. Surgical Procedures The surgical approach reconstructs the dysfunctional LES, improving its barrier function to reflux. This actually stops the reflux which prevents the carcinogen in the stomach contents from reaching the lining of the esophagus. With a successful anti-reflux procedure, there is likelihood that cancer can be prevented. Also, the symptoms caused by reflux are resolved, eliminating the need for acid suppressive medications, including PPIs. As with any surgical procedure there are risks and side effects that must be balanced with the potential benefits. RefluxMD stresses that by understanding these aspects of anti-reflux surgical procedures, an informed choice of therapy can be made. Ablation Ablation means directly burning away the lining of the esophagus involved with Barrett’s tissue. This is usually used for tissue that has progressed beyond Barrett’s to dysplasia. After the affected area is treated, the esophageal lining grows back to its original normal state in hopes of decreasing or eliminating cancer risk. However, ablation does not stop the reflux and GERD symptoms continue, requiring continued PPI therapy or an anti-reflux surgical procedure.   Why the statement “Usually used?”   Under what circumstances would this procedure be used when there is no dysplasia?   Why would anyone undergo unnecessary surgery with its inherent risks? Understand Your Choices Although seemingly complex, you should fully understand all of these options and strategies for the management of Barrett’s esophagus. RefluxMD offers many resources to answer your questions and assist you with your decisions. Take control of your disease. The final choices and decisions must be made by you.   We can only make informed choices if given balanced information.   This site simply does not do that.   I would have no complaint if this site stated it’s agenda up front, but it does not.   It specifically presents the information on this site as “the truth”.   I believe that the truth is elusive, unfolds slowly over time with multiple studies.   The “truth” represented by RefluxMD has not been validated by other sources.     Post Edited (sunbeam48) : 1/19/2013 3:38:33 PM (GMT-7)