ME/CFS and the Change of Seasons: How Does This Affect You?
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Initial Specs

Discussion in 'Create A 'PatientsLikeUs' ME/CFS Treatment Program' started by Cort, May 7, 2010.

  1. Cort

    Cort Phoenix Rising Founder

    Phase I : A Treatment Assessment Program with a Simple Patient Blog and interactivity with a PHP Forum

    (For a general reference check out Patients Like Me

    These are all ideas: all are subject to change (and many hopefully will change)

    It contains the following pages or major sections

    • Patient Profile - listing patient data with a simple blog
    • Patient Symptom Page - lists all symptoms for each person, rating, ability to update each, and update date, symptoms categorized (immune, nervous system, etc.)
    • Patient Treatment Pages - - list of all types of treatment currently trying, including type, dose, frequency, cost, etc.
    • Patient Test Page - list of all positive test results (this page is available only to the patient)
    • Total Treatments Pages - Provides a list of all the treatments, # of reviews, average rating that the CFS Community is trying; linked to individual treatment pages, see below for more
    • Individual Treatment Pages - contains averaged reports on specific treatments and Protocols, symptoms and tests each individual treatment is used for, its effectiveness at them, see below
    • Main Community Symptom Page - list of all symptoms reported, average severity, etc. in the CFS Community at large (see below)
    • Individual Symptom Pages - community reports on specific symptoms (ie fatigue page, allergy page, etc.), average severity, each symptom linkte
    • Main Community Lab Test - list of all types of tests taken by the CFS Community, # of tests taken, average # of patients testing positive
    • Individual Lab Test - community reports on specific lab tests with a listing of what treatments patients are trying to fix it, with average effectiveness (symptoms) rating.
    • Finding Similar Patients - patients use similar symptoms, treatments, (lab tests?), profiles to find similar patients
    • Finding My Optimum Treatment Section w/test results - patients filter symptoms, patient characteristics (age, gender, onset, duration), lab tests and - to get a list of treatments (Patient x clicks high fatigue, gastrointestinal pain, positive HHV6 test - and gets a list (that does not link to individual patient profiles) of treatments used by people in similar situation
    • Finding My Optimum Treatment Section w/out test results - patients filter symptoms, patient characteristics (age, gender, onset, duration), lab tests and - to get a list of treatments (Patient x clicks high fatigue, gastrointestinal pain, positive HHV6 test - and gets a list of treatments used by people in similar situation with links to their patient profiles
    • Community Profile Page - describes what the ME/CFS Community is really like, lists age ranges by percentage, gender (piechart) illness duration (percentage), type of onset, diagnostic criteria met, activity level, symptom presentation (piechart), # of doctors seen, # of co-occurring disorders, family history disorders, work status (not, part-time, full-time), financial status (government assistance, family assistance, no assistance), education level, % currently seeing a physician, expertise level of current physician, # of doctors seen over time, ?????
    •[/B] Forum Search Option -search an already existing PHP forum for related discussions
    • A Central Blog Page - listing the blogs

    Patient Profile Page

    Patient Inputs the Following Information
    Basic information
    • Name (TagName)
    • EmailAddress (ability to hide)
    • Password (hidden)
    • Location (ability to hide)
    • Doctor Currently Seeing
    • Protocol On
    • Story section - short story

    Health Factors

    • Age
    • Gender
    • TypeofOnset - acute infectious onset with no warning, acute infectious onset preceded by signs of poor health, gradual onset, acute traumatic onset
    • date of onset
    • Diagnosis - Fits Oxford Criteria/ Fukuda criteria/CCD Criteria/ new IACFS/ME Criteria
    • Current Activity Level (1-10) (Bell’s Disability scale)
    • Co-occurring Conditions (hidden)
    • Medical history - list of previous conditions by date (hidden)
    • Family history - list of conditions (hidden)
    • Page started/last updated

    Symptoms and Test Results

    • Fields: Patients can click on a symptom or enter one and rate each symptom: mild, moderate, severe

    Test Results - Ideally we want patients to be able to click on a series of test results (as well as symptoms etc. - see below) in order to find similar patients and determine which treatments are or are not working. The symptoms filter PatientsLikeME uses is quite blunt. A lab tests filter would be much more specific and be helpful on the backend for providing information on treatment efficacy for specific test results (ie what works best for HHV-6 infection?

    We could have a system where, if you searched using test results you would not get individual patient information - you would simply get average results: ie x number of patients reported having a similar profile, a list of treatments tried, along with average treatment effectiveness.

    Fields: Patients click on tests they have taken and enter the results and can enter tests that are not provided. Given the wide ranges of tests given to CFS patients this would obviously be a large section. We would probably need to create subcategories; - a positive cortisol test.

    Cortisol - saliva Positive (click here) Negative (click here)
    Cortisol (blood) Positive (click here) Negative (click here)
    Cortisol (test type unsure) Positive (click here) Negative (click here)

    Treatment Review Input Section (Tests) -
    Patients types in or checks a particular treatment
    • Provide the reason they are trying this treatment - test result / symptoms the treatment is predicted to alleviate
    • Rating - no benefit, mild benefit, moderate benefit, excellent benefit
    • Comments (textbox)
    • Side effects - click on a side effect or add one / Rate severity of side effects - none, mild, moderate, severe

    Provides Information on Product

    • Brand
    • ProductName
    • Dose
    • Frequency = Count - per time period (day, week, month)
    • Helpers - treatments to take with it
    • Protocol - if part of a protocol - state which protocol
    • Duration - length of time needed to see effect
    • Length of time on the treatment
    • Treatment adherence
    • Cost


    Patient Profile Page Contains

    • Picture / Location / Activity Level / Doctor Seeing / Age / Gender / Duration /etc.
    • Story
    • Treatments Reviewed
    • Protocols Trying
    • Physicians seeing
    • A pictoral (piechart) assessment of the patients symptoms - probably dividing them into categories (immune, nervous, endocrine associated using Canadian Consensus Criteria categories) and creating a representation of what kinds of symptoms are most prevalent in this particular patient
    • A pictoral assessment of test results again forming a graph or chart that suggests what kinds of test abnormalities are most prevalent
    • A comment section in which the patient can report on his/her experiences (the blog)
    • Best advice -

    Finding Similar Patients Page
    Provides the Following Filters
    • Search for patients by location
    • Search for patients via age, gender, type of onset, illness duration
    • Search for patients with the same symptom or a similar list of symptoms
    • Search for patients using the same treatment type or a list of treatment types
    • Search for patients with the same test results or a list of test results
    • Search for patients with a combination of these factors - ie. certain age with X symptoms Y test results using Z treatment (highlight this)
    • Patients can create Search Profiles (lists of characteristics they want to search for and can use to easily search the database)

    Finding My Optimum Treatment Page
    • Symptom Search: patients click on their symptom set and query the database to find treatments used to treat them
    • Test Result search - patients click on a test result set and query the database to find treatments used to treat them
    • Combined search - patients click in patient, symptom and test parameters to find treatments used to treat similar patients

    Main Treatment Page
    • a list of all treatments tried by the chronic fatigue syndrome community sorted by either # of reviews/highest average rating
    • A list of treatment categories with average rating per treatment category (Immune modulators/Immune supplements/ Antivirals/ Antibiotics/ Detoxification/Hormones, etc. -
    • Browse treatments according to different treatment categories

    Individual Treatment CATEGORY Pages (Sample - Immune Drugs)

    List of immune drugs sorted by either # of reviews or average rating
    Who Benefits From Immune Drugs/Supplements:

    Test Result Effectiveness # of Patients

    Test Result - Average effectiveness rating- % high, % moderate, % mild % none - # of patients

    Average Category Treatment Rating section - patients can view average treatment effectiveness across categories

    Category Rating
    Detox 6.5
    Hormones 5.0
    Immune 4.5 -(highlighted)

    Individual TREATMENT TYPE Page - (Sample Valtrex)

    WHO BENEFITS SECTION- presents a fine grained look at which types of patients benefit from a treament, ie what do the people who respond well (moderate to high effect) for a specific treatment look like - compared to the average patient.

    A. (Produce a list of moderate to high responders based on rating system)
    Patient characteristics: average age, illness duration, gender, type of onset, activity level , etc ???- compare to
    Total community average: age, illness, duration, gender, type of onset, ????

    Symptom List - create a list of symptoms that occur at moderate to high symptom severity in the responders, then sort them according to top percentage.
    Typical Symptoms Reported by This Group % Reported Severe Symptoms
    Fluey feelings 95%
    Migraines 75%
    Post-exertional Malaise 55%
    Muscle Pain 50%
    Trouble Standing 45%

    Test Results - Similar query - what positive test results did the top responders typically have?

    Positive Test Results %
    EBV 65%
    HHV6 64%
    Enteroviruses 25%

    Total Symptoms Page

    • Symptom Chart: A pictoral (graph/chart) assessment of the community's symptoms - probably dividing them into categories (immune, nervous, endocrine associated) and creating a representation of what kinds of symptoms are most prevalent in the CFS population
    • Symptom Treatment Efficacy - Every patient has entered a reason why they have tried a treatment and they have rated that treatments effectiveness, here we simply take the average effectiveness for each symptom across all treatments to see which symptoms are most difficult to treat, sorted by the most common reasons for selecting treatments to get a rough idea of which symptoms are easier or more difficult to treat (too broad?)

    Symptoms Average Effectiveness in Treating

    Symptom Average Severity Level Average Effectiveness in Treating

    Ex. - Post-exertional malaise
    Fluey Feelings
    Muscle pain

    Total Test Results Page - c

    Tests Results Divided into Categories # of Patients with a positive test result Average activity level (???)


    • Test Result Chart: A pictoral (graph/chart) assessment of the communities test results - probably dividing them into categories (immune, nervous, endocrine associated) and creating a representation of what kinds of positive test results are most prevalent in the CFS population - statistics to create a robust analysis?

    Individual Test Results Page - - Ideas

    Example: Positive EBV Test - # of patients, what does the average CFS patient with a positive EBV result look like? pie chart of average activity level, pie chart with average symptom presentation, pie chart with patient characteristics - type of onset, age, duration of illness, gender??? - what variables to enter?, pie chart of work status (?), pie chart of co-occurring conditions?

    Test Result Treatment Efficacy - Many patient have entered test results as reasons why they have tried a treatment and they have rated that treatments effectiveness, here we simply take the average effectiveness for each test result across all treatments to see which test results are most difficult to treat, sorted by the most common test results found

    Test Results Average Effectiveness in Treating - ie was the treatment tried able to return the test result to normal Effect on Symptoms - how did returning the test result to normal effect symptoms
    Low cortisol Yes/no No effect, mild, moderate, high
    Low glutathione

    Forum Interactivity

    • How to integrate the Forums into the package? Should users just be able to click on links to discussions or should there be more? Should the forum itself be changed
    • Program can scan VBulletin PHP Forum ( to bring up a list of discussions on different treatment types, test results
    • People in the VBulletin Forum can click on a person’s name to go to their Profile page in the Treatment Assessment Section

    [B]Phase II: An Individual Treatment Assessment program in which patients provide daily/weekly updates on their health[/B]

    • Creating specific Treatment Modules: sleep, diet, activity, exercise, drugs, etc. patients can use
    • A rating system to visually display treatment effectiveness
    (Idea: Some information could be gathered anonymously to allow better characterization of the ME/CFS community and to provide data to relevant authorities Thus we request some information that will not be visible to the public. This includes information on
  2. JT1024

    JT1024 Senior Member

    Great job Cort!

    One note for anyone checking out ....... Take a look at the various communities and you will get a better feel for possible functionality desired for ME/CFS. Some conditions track test results (e.g. the HIV and Transplant communities). I have not checked out all of the communities but I know PLM is trying to help each community in the best way they can.

    Functionality that can benefit all communities seems to have the top priority. Recently, I learned that they plan to incorporate a modified SF-36 for use in all communities. Not sure what stage they are at but I do know it is coming.

    Wish I could spend more time on this!

    ~ JT
  3. CBS

    CBS Senior Member

    Hey Cort,

    That's an impressive start. I think you've covered most if not all of the bases. The question now seems to be how to collect the data and what to collect. Cortisol, too high or too low? At what time of day? etc.

    Will there be any way to track changes over time? I'm thinking here of changes in symptoms and changes in medications/treatment/coping strategy. Some improvements take months to realize and dosage can be a very tricky thing.

    Lastly, I think I saw pieces of this in your description (it all might be there and I didn't recognize it), but it would be great to have the ability to choose several defining symptoms (or one particular Sx of interest - eg. headaches, GI problems, or sleep issues) and then look at who has tried what for that particular Sx and whether or not it had an effect.

    Thinking out loud,

  4. Cort

    Cort Phoenix Rising Founder

    Nice thoughts Shane. Phase II is about building an ongoing treatment review program with treatment modules specific to CFS and the ability to track changes over time.

    What to collect and how is a big question - as well as what questions to ask. There is the treatment review and the 'characterize CFS section' and they merge together. Important questions for me are what kinds of information should we attempt to gather/analyze.

    Finally there is the research question - can we build those in such a way that is valuable for more than patients? I plan to start talking to researchers and physicians when I feel I have more of a handle on the project.
  5. Cort

    Cort Phoenix Rising Founder

    Me too! I'll check out those other communities - thanks.
  6. citybug

    citybug Senior Member

    You're always ahead of the curve. When I read about the ARUP and CBs work I was thinking could the forum do something like that, and you already are!
    Maybe the programming part figures this out from the individual entries, but in my head there would be many columns for current supplements, all the many that could be taken, fewer columns of past protocols (more general antioxidant, methylation, immune support, or widely used like kutapressinn) and column for standing on disability scale. Then maybe patients could see, or a program could see that many who were doing well had some supplements in common, or most people take a certain thing.
    I''m less interested in the subsets, and people like me. I want to know what the people doing better than me, without my symptoms are taking. After many years, i've gotten most of the things I didn't have before, so I think it is more of a continuum, as some one said in discussion of Kerr's study, you can go up and down in the range of symptoms.

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