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Personalized Automated Symptom Summary (PASS)

Using Computerized Adaptive Testing (CAT)

Given meager research funding and the absence of a consensus on disease mechanism, there has been no definition or single set of criteria that has been validated to make a ME/CFS diagnosis.

Therefore, we propose to develop a patient-driven tool named “Personalized Automated Symptom Summary (PASS)” that is intended to aid a clinician more efficiently to define the character and priorities of a patient’s current symptoms of ME/CFS, Post-treatment Lyme Disease (PTLD), or Fibromyalgia (FM).

  • Wenzhong Xiao, PhD

The overall strategy is to reduce the time spent by a clinician to perform a patient’s evaluation. The intent is to provide a clinical quantitative metric that can be most efficiently administered, be highly reproducible, and address each of the many possible symptomologies.&nbsp;</p><p>This approach will provide a highly valid means to support the diagnosis, follow the progression or remission of an individual patient’s disease, as well as provide a metric to assess whether treatment interventions are effectively improving symptoms within an individual patient or within a particular cohort in a clinical trial. 


Using machine learning and artificial intelligence PASS will enable the patient to create a symptom summary, in less than 30 minutes, that accurately describes their individual current symptoms (including the symptom character and its priorities from their own perspective) in preparation for their upcoming clinician visit. From the patient’s perspective, there are as many as 65 different symptom categories in chronic, complex diseases. This patient summary (and also a clinician summary version) will then be readily available for their clinician to review when the patient arrives for his or her visit. The clinician might choose to confirm facts about those symptoms emphasized in the summary as well as ensure that other relevant symptoms may or may not be present.


Bank of servers in a long roomThe development of this tool requires many consensus meetings (maybe a dozen or more) that include 30 or more patients, clinician, and scientists all of whom are familiar with the diseases and the tools required to create the PASS. These meetings are designed to review all existing questionnaires, criteria, and other tools currently used in evaluation of ME/CFS, PTLD, and FM. The intent is to adapt questions from all currently available tools into an extensive database whose content has been fully developed and supported by clinicians and patients. These extensive questions need to be field tested by thousands of ME/CFS, PTLD, and FM patients using online methodologies and the results evaluated statistically to find those questions or combinations of questions that display accurate and precise statistical performance.

Further consensus meetings are required to further narrow down to only those questions with superior performance to be included in the version 1.0 of PASS. This beta version (1.0) can then be field-tested once again with thousands of patients online. These results will then be used to create a version 2.0 that can be considered the final product of PASS. This will represent the first final PASS version but we all recognize that subsequent versions of PASS will be required as various updates will continue to improve the product.

Collaboration is Key

Because many chronic complex diseases have overlapping symptoms, we have engaged a diverse team of patients, clinical experts and organizational leaders, as strategic partners, to represent the ME/CFS, Post-Treatment Lyme Disease and  Fibromyalgia communities. Our partners will provide project oversight and ensure that each disease and its defining symptoms are accurately represented during the PASS/CAT tool development. 

This is an exciting and unique opportunity for Open Medicine Foundation to engage patients and work with the Harvard Collaboration, Boston University and fellow chronic disease experts and pool our knowledge to improve diagnostic and treatment outcomes for patients with chronic complex diseases. This new tool will greatly improve the patient’s initial clinician encounter and expedite appropriate management strategies.       

As of publication, our current list of Strategic Partners includes:

  1. Bay Area Lyme Foundation
  2. Massachusetts ME/CFS & FM Association
  3. #MEAction USA 
  4. Solve ME/CFS Initiative
  5. Global Lyme Alliance 
  6. Emerge Australia
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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