Fibro Research? Why?

by on January 25, 2013

Fair warning friends….  today’s blog may be a bit of a rant! Its also a call for some help and suggestions so I really hope people will comment. Please: Tell me what you think!

I do not know of a single individual who cares about fibromyalgia who does not support more research. Advocacy groups and organizations, doctors and other care providers, experts and authors, patients and their families – everyone wants more research. I want more research.

But what is the purpose of research studies? What outcome do people expect from them? What is supposed to be done with knowledge gained from research studies?

The obvious answer is easy: The Cure! We all want the magic pill. Not hyped up baloney or new drugs that help some people but make others worse. We don’t want complicated or impossible to follow broad concepts. We want a pill and all symptoms vanish, gone for good. We desire well documented, triple blind placebo controlled clinical trials that prove a 100% success rate for a wonder drug that absolutely cures fibromyalgia without side effects. Wrap it up, I’ll take it!

But what if research is not providing this? Currently, this is our reality. There is no miracle cure for fibromyalgia. Does this mean that research studies done so far have been a waste? Does it mean that any research result that does not yield the magic pill is worthless? I don’t think so, but at times I am starting to wonder. fibromyalgia research study

Putting Research to Work

Speaking in broad terms, research studies aim to increase knowledge for the ultimate purpose of developing more effective treatment. Not all research is focused on a pharmaceutical cure. The complexities of fibromyalgia and the lack of proven causal physical abnormalities that can be specifically rectified means that a single magic pill cure is likely still a distant proposition. So a great deal of research has been done on different treatment approaches and options that may not represent a cure, but that do offer the hope of reducing symptoms and improving the overall quality of life.

Research has demonstrated that many things might be effective in treating fibromyalgia. For some people, various treatment options are very effective while for others the same option does nothing. This is the case for all of the drugs approved to treat fibromyalgia. Lyrica, Cymbalta, Savella – all of these offer some benefit to some patients but make others feel worse. The same applies to dozens of other drugs often used to treat specific symptoms. The same applies to various supplements, vitamins, therapies, exercises, lifestyle changes and other treatment approaches. Research has shown us many things that might work, but nothing that is guaranteed to work.

This research documented reality is at the root of why “self-management” is so important. The problem is not that there is nothing effective in treating fibromyalgia. The problem is that there are so many things and combinations of things that might be effective. Patients need to engage in a process of determining what combination of treatments will be most effective for them individually. This is specifically what FibroTrack is designed to do.

Research in and of itself rarely helps anyone. A group of scientists and researchers conduct a study and publish the study results. They then move on to doing additional studies and work to further increase knowledge. Research studies themselves provide information, but what good does this knowledge actually do for patients unless it is put to use in developing specific treatments or actions that a patient can take? This is how our system is intended to function. Knowledge gained through research studies is developed into specific treatments or products. These products are then marketed to patients who may benefit. The hope for those who take the knowledge gained from research studies and develop that into products is that their product will actually help people who will thus be willing to pay for the product. Sounds good, right?

Wrong. Products are BAD.

Jaded Insanity?

I have been sprinting down this path for over 2 years full time. I dug into research studies, contacted researchers and experts to gain a deeper understanding, read books that referenced studies and worked to digest this vast quantity of information. I embraced what the experts and research studies suggested and put this knowledge to work through designing and building the FibroTrack system. Without the research that has been done, without the knowledge gained and expressed through many researchers and experts, FibroTrack would not exist. I am not a researcher. I am not a doctor or scientist. I am just a guy who has taken all this work done by others and I put it to use.

I built a product.

Then I learned something very strange about many fibromyalgia experts and advocacy communities. They hate products. They vehemently oppose any product that is not their own. Many fibromyalgia advocacy groups and websites, fibro focused forums, patient support groups, Facebook pages and non-profit organizations – they are borderline fanatical in their opposition to any product offered for sale that targets fibromyalgia patients. How opposed? They place a strong emphasis on banning any mention of products. No linking to any product is allowed. No mention of any product, no discussion of products, no reviews or endorsements of products, no advertising for any product and certainly no collaboration in making any product available to their members or readers. They more often than not strive to prevent their readers from learning anything about any product.

products are badI certainly understand the genesis of this attitude. The nature of fibromyalgia makes it ripe hunting ground for scammers and frauds. I see this first hand. My website is getting a decent amount of traffic and our Facebook page is very active. I get emails and messages from people selling all sorts of stuff. Multi-vitamins packaged up and marketed as the latest fibromyalgia cure. Miracle devices that magically cure fibro with magnets.  DVD’s or ebooks or online courses promising to fix everything from chronic pain to a clogged up toilet.

But is the problem of fraudulent claims and scams so prevalent that in order to try and counter it the best course of action is to automatically reject everything? Are patients who trust and rely on fibromyalgia groups or organizations to help them improve their treatment efforts having their needs best served when such groups automatically reject every product without making any effort to evaluate them?

This brings me back to my original quandary. What is the purpose of the research that advocacy groups say they support and demand? If your going to automatically reject without evaluation any and every product that companies or individuals may build based on research studies and experts suggestions, what is the point in doing the research studies to begin with?

We want millions of dollars to be spent doing research, but we automatically reject anything that is offered for sale? Why would anyone invest money in doing research in the face of this attitude? Investing large sums of money and time into building products – even research supported products that facilitate processes that experts agree are needed – is crazy knowing that those same experts and organizations are going to automatically reject the product without even looking at it.

Failed Responsibilities

I really view this issue as representative of a fundamental failure on the part of some fibromyalgia organizations to deliver on their promise to fibromyalgia patients. Some organizations are more focused on trying to prevent their readers from venturing to any other source for information than they are concerned about helping readers get all of the information they really need. Rather than trying to work together and collaborate for the greater good, most groups will go to any length to prevent their readers from ever going to any other group or source of information.

I know there are lots of reasons for this. Many sites do generate revenue from advertising and when a reader leaves their site, they are no longer present to potentially click on an ad. So they benefit from doing anything they can to keep readers from leaving. Some organizations believe that they are somehow better serving their readers by being unbiased and endorsing nothing. I do understand that approach, but when you take it to the point of actively working to prevent readers from learning about new developments that could potentially help, then any benefit is overshadowed by the negative action.advocates faile

I believe that fibromyalgia advocacy groups and sites have a responsibility to provide information about new developments and possible treatment approaches that may be useful. Provide reviews, cite research support (or rejection) and other critical information and try to help readers understand what is available, what the risks are and then to make a decision on their own about whether it may be of value to them or not.

There are certainly plenty of advocates and organizations who do an excellent job of this. I have also found many bloggers, authors and website owners who put forth a huge effort to keep their readers updated and evaluate new products and developments. Without the support and encouragement of some of these, I doubt FibroTrack would ever have been built. Jan Chambers – President of the National Fibromyalgia and Chronic Pain Association – in particular is fantastic. I have witnessed the effort she makes to really work to help people and I am in awe of her dedication. Rae Gleason, who worked for the National Fibromyalgia Association for a very long time and now does consulting work including for the NFMCPA made the effort to review FibroTrack during the early prototyping stages. Her enthusiasm and support at a time when I was really stressed and doubtful of being able to pull it all together made a difference.

What is the big point to this rant? Be careful where you go and who you trust for information. Recognize that many of the advocates and experts out there are more concerned with preventing you from gaining information than with providing good information. Lead your own efforts. Be open minded. Find and use multiple sources for news and information – do not rely on any single source. That means my website here as well. Let me be the first to tell you -  www.fibromyalgia-treatment.com should NOT be your only source for fibromyalgia information or support! My job – literally – is to help you improve your fibromyalgia management efforts. But it would be deceptive on my part to tell you that everything you need to know you can find here. I know better. Anyone else who is telling you different – be very wary.

My Approach

On my website, in our forums, on Facebook and inside the FibroTrack application we do not take actions to deliberately restrict information. That does not mean I am allowing every snake oil salesman to say anything he wants in an effort to sell stuff. It does mean that I am putting forth the time and effort (or asking someone I know and trust to do so) to take a look at things people recommend or suggest to me. If there is any research support or expert support or really any sound basis at all relative to whatever product I am evaluating, then I will allow people to post about it and discuss it openly. I am not banning links or taking down links posted in the forums to outside sites or products. I would prefer that readers have the opportunity to learn about all the options that are available and to decide for themselves what they want to try. I am seeking to do product reviews as well and even to make products available to FibroTrack members through the application.

But fair warning to those selling junk. My audience and users are armed and dangerous to you. They are armed with FibroTrack and if what you sell is worthless not only will we know it – we will have hard data to prove it and we will share this data with others!

I Need Your Help

Spreading the word about FibroTrack is an overwhelming task. I am not an internet marketing guru. Figuring out how to get Google to rank this website for all the great keywords is largely a mystery to me. Doing online advertising is restricted by both my budget and lack of knowledge on how to do it effectively. So far, the most effective means of promotion has been through online word of mouth. Individuals sharing information about FibroTrack with friends. If your reading this – please help me in this effort!

If you have a fibromyalgia focused blog or website or you’re a member of a fibromyalgia organization or support group, please contact me about helping me to share information on FibroTrack with your group.

One of the things I am trying to do is build “Promotional Partnerships”. This is a program through which I hope to work with other groups to help each other in building better content, sharing information and helping more people to benefit from using FibroTrack.

I know that not everyone can afford to subscribe to the FibroTrack service. The understanding that there are individuals out there who could really benefit from FibroTrack but who are missing out because they cannot afford it bothers me. From a business standpoint, this should be expected. From a personal standpoint, it bothers me. I am planning to address this with promotional partners by granting 1 free FibroTrack membership for every 4 paid referrals. An individual on disability or who is unable to work and lacks the funds to pay for FibroTrack will be able to get a free account through the referral efforts of promotional partners.

I am also implementing an affiliate program. This means that if you promote and sell FibroTrack memberships from your own website, newsletter or other efforts (like getting a care provider to use it), you can earn a 25% commission on all sales including recurring subscription payments. I would rather help others with fibromyalgia earn some money on the side than to pay Google advertising dollars for the same end result.

FibroTrack is also going to be offered through care providers. I have received inquiries from a wide range of medical professionals interested in using FibroTrack with their patients. A program designed to facilitate this is in the works, if you are a care professional please contact me. An exciting part of this development is that I hope to have a number of fibromyalgia coaches, therapists and other care providers making their services available within FibroTrack.

If you are interested in any of these programs or you participate in or subscribe to a fibromyalgia organization and are willing to try and help me promote FibroTrack – please contact me.  Terry@fibrotrack.com

Any other suggestions or comments about how to better promote FibroTrack… I appreciate the input!

Leave a Comment

{ 4 comments… read them below or add one }

Jane Henry January 26, 2013 at 1:49 pm

i am suffering with fibromagila i have had it about 13 yrs.

Reply

tracy January 26, 2013 at 2:18 pm

I don’t think it controversial,i am newly diagnosed after 6 years of terrible pain and apalled at how little is being done and the number of sufferers.
I think you realize as do I that what ever our woes are that unless they are feeling what we feel the individuals that have the power to cure are not nearly as interrested.,that seems to be human nature.
Thks
from someone who is only looking after the pain at home as best i can without the resources for anything better,but living with daily pain that seems unmanageable./tracy

Reply

cmschmidt January 28, 2013 at 2:22 am

From someone who has been asked by various doctors and other powers that be to track my symptoms using a “multi-page paper tracking” method, there were soooooo many times I said to myself there has to be a better way given all of the technology we have access to in our lives. I often thought I should design something myself but that is NOT my skill set. When I first heard about FibroTrack and that it would be released in 2012, I was eagerly looking forward to it the entire fall. I was overjoyed when the update came via the NFMCPA e-newsletter and signed on (this is how I found out about it – so thank you NFMCPA for your openness ). To me it is worth the membership price to have access to a tool that I could not have designed myself which includes so many elements that I am aware of and struggle with in my daily existence. Someone else out there actually “gets it” and FibroTrack compiles it into a detailed picture when I take a look at my daily “fibro scores”, the reports section and the various graphs that my personal data can be dumped into. My husband was also “wowed” to see a “picture” of my chronic illness as it has been lived for the past month, which included a very stressful and painful IME and the resulting flare up and gradual recovery as I consistently implemented my treatment plan – “my online flare up buddy”. When I take the regular yearly membership fee and divide it by 365 days a year, I am getting incredible value for around 28 cents per day. There is no way that I could find anyone else willing to take notes for me even for minimum wage. I for one hope Google and the rest of the techno world take note! This tool needs to go “viral”!

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Wendy March 8, 2013 at 5:10 pm

I also am frustrated with the lack of work in just research alone into the origins of Fibromyalgia, nevermind the workings of it in the body. Yes, all we can do right now is fight the symptoms piece by piece, but its better than nothing, which is what was happening 15 years ago…and even worse in 1990 when it was actually confirmed as an illness by Rheumatologists. So, progress has been made.
I know not as much as we would have liked at this point, but at least we have shows such as Dr. Oz’s and Oprah’s who talk about it, albeit just a 15 segment, at all. Thanks for this great blog!

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