This thread contains background information and my ideas about this project. I'm trying to gauge interest and get suggestions.
(The topics embedded in this page are being split into different threads for discussion.)
Background - I first thought of creating a comprehensive treatment assessment program on the Phoenix Rising website about a year and a half ago.
My ideas about the project have grown over time (quite a bit :Retro redface
. It would have several purposes/possibilities.
To that end I've spent a great deal of time over the past year and a half trying to learn computer programming. It’s become clear to me that it would take me a great deal of time to get up to snuff enough to produce this kind of program. With some dollars adding up from donations I embarked a couple of months ago on an exploration of how expensive it would be to create such a site. At one point I learned a similar program had already been created.
PatientsLikeMe - I learned about the PatientsLikeME site about nine months ago. PatientsLikeMe is very innovative, forward thinking treatment review site that has the nice benefit of apparently being run by very good people.
PLM allows patients FM patients, for instance, quickly how effective a drug, say lyrica, is at reducing pain in the FM community at large. It allows them to see what side effects patients generally experience, what dosages work the best. You can punch in a symptom - say migraine - and get a list of treatments used to battle that. Click on a treatment and you get the information I mentioned above - what people use it for and how effective it is. Then you can click on a patient who's using it and see what their comments on it are and what side effects, etc they personally experienced. Finally you can follow that patient over time and see how they do on the drug.
http://www.patientslikeme.com/treatments/show/2421-duloxetine
The site is clearly a huge step up in the treatment review field and will, I would think, redefine how treatments are assessed in the medical field, vastly increase the medical community's understanding of which types of treatments are effective for which types of patients and basically be a huge boost for patients everywhere. It’s a great site! One way or another the CFS community should take advantage of this type of site.
PatientsLikeMe added chronic fatigue syndrome to its Fibromyalgia section in the past year. They are subsumed within a sea of FM patients and in a section that was built specifically for fibromyalgia. While the initial symptom base doesn't look all that much like CFS it is possible for CFS patients to make it more CFS-like by adding symptoms to the list. Still, to some extent, CFS patients are bit of a round peg trying to fit into a square hole. There’s no denying, though, that this site has immense possibilities why for CFS patients as it is now.
There are good reasons to stick with PatientsLikeMe - it’s an excellent site that provides many opportunities, the owners appear to be adding capability fairly frequently, they have substantial financial backing, etc….and they may be able to do some things that would be difficult for us to do .
Doing What They Do Differently - After looking at PatientsLikeMe - there is also the opportunity to take what works and what doesn't work as well and improve on it. My conception of the site goes well beyond what PLM is trying to in several areas.
Add Test Results - Adding tests results (for those people willing to list them) is a particularly potent need in chronic fatigue syndrome because, unlike some of the diseases on that site, so many people have different test results. Imagine scanning a program for people with the same test results that you have and seeing what treatments are working for them.
Image being able to bring up a type of test result (failure on a tilt table test) and then describing the types of patient that display this. How are they different from other patients? Do they have a typical pattern of other abnormal test results? treatments work for them?
(Yes, there are security issues with test results but we could hide individual information test result information and present test result information as an aggregate; ie people with X set of test results tried these treatments and achieved this success or failure with them -).
CFS Itself Needs to Be Characterized Better/Subsets need to be revealed - PLM does not attempt to characterize some important community variables or to pluck out Subsets - CFS, as we all know is a very complex disorder, possibly with many subsets. Creating a site specifically attuned to CFS could help us better understand that aspect of it.
PLM asks what kinds of treatment work for people with fatigue in CFS. We would ask that as well but we could also characterize ME/CFS as well: We could ask simple questions such as if type of onset effects the disease progression at all? How about Illness duration? How are people who’ve had this disease 5 years different from people who’ve had it 20 years. Dr. Maes says rates of IBS increase - do they? I’ll bet rates of MCS and FM increase. Do they? All these questions are answerable if you have a good enough database.
Examples - Gender - a very simple example, create a table or pictorial representation examining the effects of gender: males vs female on various factors . (Unfortunately I can't drop my table on here. Imagine it as a table.
Two columns with the stats underneath Male l Female
You can do the same thing with many factors.
Digging Deeper - This is just the beginning of how it's possible to characterize this community. For example when we query all people with HHV6 Infection - we get a page that contains pie charts or other visual aids of.....
[
Characterize the ME/CFS Community while we’re at it- why not go whole hog and provide a snapshot of the ME/CFS Community while we’re at it. Much of the information we gather is not available.
• Work status (part-time, full time, not working)
• Date last worked for pay (average)
• Education Level
• Disability/Social Services utilized (% using government disability, private disability, other government support???)
• Finances - % government disability /private disability support/family support/no outside support
• My health over the past year has…improved, gotten worse, etc.
• Since I came down with CFS my health has……..
• Common co-occurring diagnoses
Medical community satisfaction
• Type of physician/physicians seen
• Satisfaction with current physician
• health practitioner level of expertise in ME/CFS
• I am not seeing a physician because (finances prevent, no suitable physicians available, tired of wasting my money))
The Phoenix Rising Forums - we would also be able to integrate the Forum package, with all its capabilities, into the site.
Physicians - We could also include a Physician variable which allow patients to access patients by Physician - thus allowing patients to examine how a broad swath of patients under Dr. Cheney’s, Dr. Peterson’s, etc care are doing.
I’m basically committed to doing this project. Jerry (xlynx), a forum member and software developer, has agreed to oversee it on the technical end. He believes it would not be difficult to meet PatientsLikeMe’s capabilities and encourages us to find ways to surpass PatientsLikeMe (PLM) in its application in CFS. In short he thinks we should ‘think big’.
Costs:
I’ve presented a First Stage of the site like PLM to several programmers based in India, one in the US and to Jerry. Stage I would include virtually everything you see on the PatientsLikeMe Site minus the ability to track treatments over time (Stage II) and not including my potential additions. These were preliminary forays to get a sense of how much something like this would cost.
The bids to create a site like this, thus far, have ranged from 5-6k (India), 6-10k (US) and we’re waiting on another bid from India. Jerry believes a single programmer working for three or four months at somewhere around $1800 a month could produce this site. I rather suspect they are on the low end. I can kick it off with perhaps a quarter of the total needed for the low-end estimate.
(The topics embedded in this page are being split into different threads for discussion.)
Background - I first thought of creating a comprehensive treatment assessment program on the Phoenix Rising website about a year and a half ago.
My ideas about the project have grown over time (quite a bit :Retro redface
. It would have several purposes/possibilities.- to come up with a way for patients to easily find treatments that are more likely to work for her/him by giving them the capability to identify similar patients to them and learning what is not working and what is working for them
- to gather useful information on treatment options that could be transmitted to drug companies, doctors, etc. that will help them refine their treatment approach to ME/CFS; this is apparently what PatientsLikeME is doing.
- Tease out different types of ME/CFS patients and compare them using a variety of factors (ie onset, duration, test results, treatment effectiveness, etc. ie - attempt to find the subsets
- Provide a comprehensive profile of the ME/CFS Community
To that end I've spent a great deal of time over the past year and a half trying to learn computer programming. It’s become clear to me that it would take me a great deal of time to get up to snuff enough to produce this kind of program. With some dollars adding up from donations I embarked a couple of months ago on an exploration of how expensive it would be to create such a site. At one point I learned a similar program had already been created.
PatientsLikeMe - I learned about the PatientsLikeME site about nine months ago. PatientsLikeMe is very innovative, forward thinking treatment review site that has the nice benefit of apparently being run by very good people.
PLM allows patients FM patients, for instance, quickly how effective a drug, say lyrica, is at reducing pain in the FM community at large. It allows them to see what side effects patients generally experience, what dosages work the best. You can punch in a symptom - say migraine - and get a list of treatments used to battle that. Click on a treatment and you get the information I mentioned above - what people use it for and how effective it is. Then you can click on a patient who's using it and see what their comments on it are and what side effects, etc they personally experienced. Finally you can follow that patient over time and see how they do on the drug.
http://www.patientslikeme.com/treatments/show/2421-duloxetine
The site is clearly a huge step up in the treatment review field and will, I would think, redefine how treatments are assessed in the medical field, vastly increase the medical community's understanding of which types of treatments are effective for which types of patients and basically be a huge boost for patients everywhere. It’s a great site! One way or another the CFS community should take advantage of this type of site.
PatientsLikeMe added chronic fatigue syndrome to its Fibromyalgia section in the past year. They are subsumed within a sea of FM patients and in a section that was built specifically for fibromyalgia. While the initial symptom base doesn't look all that much like CFS it is possible for CFS patients to make it more CFS-like by adding symptoms to the list. Still, to some extent, CFS patients are bit of a round peg trying to fit into a square hole. There’s no denying, though, that this site has immense possibilities why for CFS patients as it is now.
Building a PatientsLikeMe (Plus) Site Of Our Own
There are good reasons to stick with PatientsLikeMe - it’s an excellent site that provides many opportunities, the owners appear to be adding capability fairly frequently, they have substantial financial backing, etc….and they may be able to do some things that would be difficult for us to do .
Doing What They Do Differently - After looking at PatientsLikeMe - there is also the opportunity to take what works and what doesn't work as well and improve on it. My conception of the site goes well beyond what PLM is trying to in several areas.
Add Test Results - Adding tests results (for those people willing to list them) is a particularly potent need in chronic fatigue syndrome because, unlike some of the diseases on that site, so many people have different test results. Imagine scanning a program for people with the same test results that you have and seeing what treatments are working for them.
Image being able to bring up a type of test result (failure on a tilt table test) and then describing the types of patient that display this. How are they different from other patients? Do they have a typical pattern of other abnormal test results? treatments work for them?
- the query would go something like this= gather all patients with positive tilt test results then create a list in descending order of frequency - of test abnormalities, typical symptoms, type of onset, gender, duration of illness, activity levels, treatment effectiveness…….
- Then do the same with the community at large- show a typical CFS patient right next to them.
(Yes, there are security issues with test results but we could hide individual information test result information and present test result information as an aggregate; ie people with X set of test results tried these treatments and achieved this success or failure with them -).
CFS Itself Needs to Be Characterized Better/Subsets need to be revealed - PLM does not attempt to characterize some important community variables or to pluck out Subsets - CFS, as we all know is a very complex disorder, possibly with many subsets. Creating a site specifically attuned to CFS could help us better understand that aspect of it.
PLM asks what kinds of treatment work for people with fatigue in CFS. We would ask that as well but we could also characterize ME/CFS as well: We could ask simple questions such as if type of onset effects the disease progression at all? How about Illness duration? How are people who’ve had this disease 5 years different from people who’ve had it 20 years. Dr. Maes says rates of IBS increase - do they? I’ll bet rates of MCS and FM increase. Do they? All these questions are answerable if you have a good enough database.
Examples - Gender - a very simple example, create a table or pictorial representation examining the effects of gender: males vs female on various factors . (Unfortunately I can't drop my table on here. Imagine it as a table.
Two columns with the stats underneath Male l Female
- Average age
- Average duration of illness
- Average activity level
- Type of Onset %acute w/out warning, %acute w/ previous reduced health, %gradual %acute w/out warning, %acute w/ previous reduced health, %gradual
- Symptom presentation Pie chart showing relative proportions of immune/nervous system, etc symptoms (CCC)?
- Or a list of most common symptoms reported
- Co-occurring Conditions
- ?????
You can do the same thing with many factors.
Digging Deeper - This is just the beginning of how it's possible to characterize this community. For example when we query all people with HHV6 Infection - we get a page that contains pie charts or other visual aids of.....
- %acute/gradual onset, average activity level, illness duration, %male/female and charts indicating most common symptoms, most common other positive test results, treatments tried, -----to be determined
[
Characterize the ME/CFS Community while we’re at it- why not go whole hog and provide a snapshot of the ME/CFS Community while we’re at it. Much of the information we gather is not available.
• Work status (part-time, full time, not working)
• Date last worked for pay (average)
• Education Level
• Disability/Social Services utilized (% using government disability, private disability, other government support???)
• Finances - % government disability /private disability support/family support/no outside support
• My health over the past year has…improved, gotten worse, etc.
• Since I came down with CFS my health has……..
• Common co-occurring diagnoses
Medical community satisfaction
• Type of physician/physicians seen
• Satisfaction with current physician
• health practitioner level of expertise in ME/CFS
• I am not seeing a physician because (finances prevent, no suitable physicians available, tired of wasting my money))
The Phoenix Rising Forums - we would also be able to integrate the Forum package, with all its capabilities, into the site.
Physicians - We could also include a Physician variable which allow patients to access patients by Physician - thus allowing patients to examine how a broad swath of patients under Dr. Cheney’s, Dr. Peterson’s, etc care are doing.
I’m basically committed to doing this project. Jerry (xlynx), a forum member and software developer, has agreed to oversee it on the technical end. He believes it would not be difficult to meet PatientsLikeMe’s capabilities and encourages us to find ways to surpass PatientsLikeMe (PLM) in its application in CFS. In short he thinks we should ‘think big’.
Costs:
I’ve presented a First Stage of the site like PLM to several programmers based in India, one in the US and to Jerry. Stage I would include virtually everything you see on the PatientsLikeMe Site minus the ability to track treatments over time (Stage II) and not including my potential additions. These were preliminary forays to get a sense of how much something like this would cost.
The bids to create a site like this, thus far, have ranged from 5-6k (India), 6-10k (US) and we’re waiting on another bid from India. Jerry believes a single programmer working for three or four months at somewhere around $1800 a month could produce this site. I rather suspect they are on the low end. I can kick it off with perhaps a quarter of the total needed for the low-end estimate.
