This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi, I don't want to mislead anyone. A patient told me about this site and I am not here to plug my office, a treatment or ask for money but I would like to ask the MS community for some input and a few minutes of your time. I do not want to intrude on your community so I thought I would ask before posting anything further. There are many people in the world who are not sincere so I was not sure the best way to ask for help without anyone thinking I was trying to do something wrong.

Would it be ok if I posted to tell you all about a web portal that a neurologist, a few others, and myself have been working on to track quality of life in patients with chronic illnesses. Right now we are working on the MS module. I am hoping to secure funding from the NIH or other companies/agencies. There is a market survey with 10 questions that we would like MS patients to fill out just to see if we have a viable product and to use when talking to companies about funding the portal.

I will check back Monday afternoon and if I dont have a zillion replies telling me to "buzz off and get lost" I will post a more through post with a link to the survey. In the meantime- the website is http://www.betterqol.com if you just want to read a little more about what we want to do.

P.S. I very much know what you all go thru on a daily basis. That is why this portal means a lot to me.

Best regards,
Blake

Total waste of money in my books. This research is only one step above seeing how fast an EAE mouse can run.

gwa

For my two cents--funding put toward finding the CAUSE of MS is better spent and more likely to improve our Quality of Life!

I already answered a questionaire on QOL at my neurologist's office here in Ottawa. I think something like that already exists.

I did not realize there would be so much negativity coming from this community. I did not want to intrude so that is why I asked permission before posting a lengthy post. I figured if I just posted something it would seem a bit presumptuous. So far the response regarding BetterQOL.com has been very positive and forthcoming. I have met with the head of the local MS society as well as had a round table discussion with several neurologists who all thought it was a great idea. This portal is the brain child of a neurologist. We have also filed a patent application.

I do not want to intrude on your community but since this forum is open to anyone I am going to finish the post. The physician, a few others, and myself have been working on a web portal to track quality of life in patients with chronic illnesses. You have already said, "this is already being done or there are many web portals on the Internet, why is this one special?”

BetterQOL.com (http://www.betterqol.com) is dedicated to bringing research quality of life measurements to routine clinical care. When a patient with multiple sclerosis currently sees their physician in routine practice, usually there is no formal assessment made of the patient's quality of life. A physician may look back at the patients history but no comparison using actual data is made from past to the present.

BetterQOL.com would like to change this. By bringing standardized diagnostic research instruments and quality of life surveys directly into a physicians practice, it would now be possible for the physician and patient to track the success of the patients’ treatment plan.

Many patients who suffer from chronic illnesses like MS at times may begin to loose hope; particularly when they are unable to see improvements from their treatment from the past year, or even the past six months. But if a patient could compare changes in their present treatment plan to the past, they would be able to actually see the changes. Therefore, their quality of life could be improved based upon this data.

What makes the quality of life so important to patients? For one patient, it may be waking up in the morning feeling rested enough to accomplish daily tasks at work before the afternoon exhaustion sets in. Another patient may be desperately trying to make it to their grandson’s big sporting event, although the temperature outside is stifling hot. And yet for another patient, they may just want to enjoy cooking a homemade dinner for the family without worrying if they will have enough energy afterwards to do the dishes, possibly help their children with their homework, or even get their children ready for bed.

Basically, this all boils down to one thing, the overall quality of life. Patients may not use those exact words, but as anyone with a chronic illness knows, the ability to function and live a normal life is what is valued most. To live a life that most people take for granted. A life that most patients with a chronic illness, fear will become a distant memory.

While this may seem obvious to patients and acknowledged on a theoretical basis by physicians; in clinical practice, the patients’ quality of life is not routinely tracked.

As I said right now we are only working on the MS section and would like to hear from you and get your input on our plans to better track MS treatment. Keep in mind our multiple sclerosis forms will come from the MS Quality of Life Instrument and may take about one hour to fill out. A helper may assist you in filling out the surveys as long as they do not coach you for the answers. The following sections/topics are as follows:

-Bladder control
-General quality of life
-Fatigue
-Chronic pain
-Sexual satisfaction
-Bowel control
-Impact of vision impairment
-Mental Health
-Social support needs
-Survey of the patient’s perceived deficits

Now that you know our plans... we need your help. Will you please spend just a few minutes of your time on the http://www.BetterQOL.com website to fill out our short market analysis survey and give us your input. Your feedback about using the portal will help us tremendously. The direct link to the survey is http://ms-survey.betterqol.com/SurveyIntro.aspx

It will only take a minute or two of your time and your time is very appreciated. Feel free to let others who have MS also know about the survey.

Warm regards,
Blakely

Blake,
Yes, I did notice how polite you made your statements and yes I do agree there are many unscrupulous people trying to sell snake oil and such. But if you ask me for my opinion (and i think you did) I'll have to agree with gwa. Good intentions are nice and dandy but a flat out efficacious treatment might get a warmer reception.

This portal is to improve ongoing treatments until a cure is found. Keep in mind I do appreciate all comments good and bad becuase I want to make sure there are sufficient people to make this worth our time to make this happen. Your negative comments are also giving me some good feedback.

I was hesitant to mention this at first but since it is on the website anyway and it can be googled. Dr. Brian Loftus is the one who created this concept and he does MS research as well. He is also on the NMSS Lonestar Chapter Clinical Advisory Committee. You may hear him speak about the research he is participating in - the Tovaxin vaccine's phase I/II dose ranging and retreatment trials at http://www.opexapharmaceuticals.com/videoQA.html.

A short bio can be found about our team at http://www.betterqol.com/team.html (we need to add photos) and his practice website is www.LoftusMD.com (currently being redesigned).

Believe me, a cure is important but this portal also serves to improve the physicians quality of life in addition to the patient's. Imagine going to an appointment and your doctor already knowing how you have been doing since you were last seen because you filled out all of your info ahead of time and it has been scored. You could spend that extra time in your appointment discussing what is most important to you.

If you make a change in your treatment, for example you change your anti depressant and then a month to two later you start getting more headaches. You can easily pinpoint what may have changed to cause those headaches. Now, would you think to correlate medication changes to new symptoms? Just a thought?

Any feedback is appreciated. Link to the market survey again is http://ms-survey.betterqol.com/SurveyIntro.aspx

Don't have a zip code being up here in Canada, good ideer though Blake just give me a yes to all your survey topics.

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Had ms for over 19 years now.