Introduction - This project is also an opportunity to gather alot of information on the ME/CFS Community. All the data in gathered in this section would be aggregated to provide a snapshot of the ME/CFS Community; no individual data would be available. Its an opportunity to make the world acquainted with the state of the CFS community.
The question is what types of data should be gathered and which types of data displayed? Some ideas are below.
Basic Patient Info
Work and Financial Status
• 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
Health Course and Status
Medical Community Satisfaction Section
The question is what types of data should be gathered and which types of data displayed? Some ideas are below.
Basic Patient Info
- Age - percent found in various age ranges
- Gender
- Duration of illness - >1 year, 1-5 yrs, 5-10, 10-20, >20?
- Activity level - Bells Disability Scale
- Type of onset - acute without warning, acute preceded by reduced health, gradual
- Diagnostic Criteria Met (Fukuda, CCC, new IACFS/ME)
- Co-occurring Conditions - list
- Family History - list top medical conditions in immediate family (by category?
- Parents with Children - % of parents whose child has a diagnosis of ME/CFS
Work and Financial Status
• 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
Health Course and Status
- My health over the past year has…improved, gotten worse, etc.
- Since I came down with CFS my health has……..slowly improved/slowly declined/improved
- Common co-occurring diagnose
- Course --- how to quantify course with the different types of ups and downs patients experience?
Medical Community Satisfaction Section
- Number of doctor's seen
- Type of physician/physicians seen
- Satisfaction with current physician
- Current physicians level of expertise in ME/CFS -
- I am not seeing a physician because.... (finances prevent, no suitable physicians available, tired of wasting my money))