If this project gets done what kind of variables should it contain? What kind of questions should it be able to answer?
Perhaps the best way is to ask yourself what do you want to know about ME'/CFS and the community and go from there.
Here are some ideas from the first page
CFS Itself Need 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 more moving from a primarily Treatment program to a disease characterization program: We could ask simple questions such as if type of onset effects the disease progression at all? How about Illness duration? How are people whove had this disease 5 years different from people whove had it 20 years. Dr. Maes says rates of IBS increase - do they? Ill bet rates of MCS and FM increase. Do they?
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
?????
Query specific sets of patients - You could look for all female patients say with active HHV-6 infection and ill for over 10 years
And ask the database to list the treatments theyve tried, what their average effectiveness is and something about the patients, say what their average activity level is, what their most prominent symptoms, etc., what percentage of these patients are able to work, their co-occurring conditions, etc.
Directly compare different type of CFS patients; we could bring up
Patients with HHV-6 and EBV infection and then remove the EBV infection variable from the equation and see get some idea of what EBVs effects are; do certain symptoms recede? Do activity levels go up?
Better characterize the positive responders - scan the system for people who have substantial jumps in activity levels (2 or more) during a treatment. Provide a list in descending order of highly effective treatments in the CFS community. Characterize the entire group of people who experience this? %acute/gradual onset, top 10 moderate to severe symptoms, average duration of illness, percent male/female,
Knock it Out of the Park Section - Provide a list of treatments and the number of people who have experienced very high amounts of success on them (who have improved 4 or 5 activity levels on them). Characterize the entire group of people who experience this? %acute/gradual onset, top 10 moderate to severe symptoms, average duration of illness, percent male/female,
Compare to the CFS Community at large - similar list for Community at large
Best Bang for the Buck Section - figure in cost and benefit to determine the cheapest ways to see improvement
Characterize the Poor Responders -
Characterize, characterize, characterize - ideas
Characterize People Who Report They have Gotten Worse over time -what are they like?
Characterize People Who Report they have improved over time - how are they different?
Characterize People with FM vs without, with MCS vs without, with IBS vs without.
Characterize People who have the illness for < 1 year, 1-5 years, 5-10 years, 10-20 years, >20 years
Look at everything: activity levels, symptoms, lab tests, disagnoses cropping up, even the participation in the work force - we get a snap shot of what happens to ME/CFS patients simply by focusing on duration of illness and then querying the database.
Treatment Watch List - Create a Watch List or something - of treatments that commonly produce higher side effects.
Perhaps the best way is to ask yourself what do you want to know about ME'/CFS and the community and go from there.
Here are some ideas from the first page
CFS Itself Need 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 more moving from a primarily Treatment program to a disease characterization program: We could ask simple questions such as if type of onset effects the disease progression at all? How about Illness duration? How are people whove had this disease 5 years different from people whove had it 20 years. Dr. Maes says rates of IBS increase - do they? Ill bet rates of MCS and FM increase. Do they?
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
?????
Query specific sets of patients - You could look for all female patients say with active HHV-6 infection and ill for over 10 years
And ask the database to list the treatments theyve tried, what their average effectiveness is and something about the patients, say what their average activity level is, what their most prominent symptoms, etc., what percentage of these patients are able to work, their co-occurring conditions, etc.
Directly compare different type of CFS patients; we could bring up
Patients with HHV-6 and EBV infection and then remove the EBV infection variable from the equation and see get some idea of what EBVs effects are; do certain symptoms recede? Do activity levels go up?
Better characterize the positive responders - scan the system for people who have substantial jumps in activity levels (2 or more) during a treatment. Provide a list in descending order of highly effective treatments in the CFS community. Characterize the entire group of people who experience this? %acute/gradual onset, top 10 moderate to severe symptoms, average duration of illness, percent male/female,
Knock it Out of the Park Section - Provide a list of treatments and the number of people who have experienced very high amounts of success on them (who have improved 4 or 5 activity levels on them). Characterize the entire group of people who experience this? %acute/gradual onset, top 10 moderate to severe symptoms, average duration of illness, percent male/female,
Compare to the CFS Community at large - similar list for Community at large
Best Bang for the Buck Section - figure in cost and benefit to determine the cheapest ways to see improvement
Characterize the Poor Responders -
Characterize, characterize, characterize - ideas
Characterize People Who Report They have Gotten Worse over time -what are they like?
Characterize People Who Report they have improved over time - how are they different?
Characterize People with FM vs without, with MCS vs without, with IBS vs without.
Characterize People who have the illness for < 1 year, 1-5 years, 5-10 years, 10-20 years, >20 years
Look at everything: activity levels, symptoms, lab tests, disagnoses cropping up, even the participation in the work force - we get a snap shot of what happens to ME/CFS patients simply by focusing on duration of illness and then querying the database.
Treatment Watch List - Create a Watch List or something - of treatments that commonly produce higher side effects.