Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Post COVID .

Personalized Automated Symptom Summary (PASS)

Using Computerized Adaptive Testing (CAT)

TECHNOLOGY DESCRIPTION

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.

TECHNOLOGY DEVELPOMENT

The 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

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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

 

Averting a second pandemic:

Open Medicine Foundation leads groundbreaking international study of

Long COVID’s conversion to ME/CFS

AGOURA HILLS, CALIF.  — Open Medicine Foundation (OMF) is leading a large-scale international collaborative study investigating the potential conversion of Post-Acute Sequelae SARS-CoV-2 infection — more commonly known as Long COVID or Post-COVID Syndrome —  to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic, life-altering disease with no known cause, diagnostic test or FDA approved treatments available.

Up to 2.5 million people in the U.S. alone suffer from ME/CFS; the COVID-19 pandemic could at least double that number. An estimated 35 percent of Americans who had COVID-19 have failed to fully recover several months after infection, prompting many to call it “a potential second pandemic.”

OMF recognized a familiar health crisis emerging, one with eerie similarities to ME/CFS. This crisis presented a unique opportunity to understand how a viral infection — in this case COVID-19 — may develop into ME/CFS in some patients. The goal is to find targeted treatments for ME/CFS patients and ultimately prevent its onset in people infected with SARS-CoV-2 or other infections.

The federal government is only now investing in Post-COVID research, with no focus on its connection to ME/CFS. OMF has already engaged researchers for the largest-scale study of its kind, solely supported by private donors who have contributed over one million dollars to date. When fully funded, the five million dollar, three-year study will be conducted across the globe at OMF funded Collaborative Research Centers, led by some of the world’s top researchers and ME/CFS experts.

BACKGROUND

In a significant percentage of patients, infections preceded their development of ME/CFS.  For example, according to the CDC about one in ten infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti develop symptoms that meet the criteria for ME/CFS.

THE STUDY

The ability to follow the development of ME/CFS from a known viral infection is unprecedented to date and crucial to researchers’ understanding of the disease. The focus of this study is to find the biological differences between persons returning to good health after COVID-19 and persons who remained ill more than six months after infection and developed ME/CFS.  Understanding these alterations in key pathways can lead to groundbreaking discoveries including new biomarkers, drug targets, and prevention and treatment strategies.

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About Open Medicine Foundation

Established in 2012, Open Medicine Foundation leads the largest, concerted worldwide nonprofit effort to diagnose, treat, and prevent ME/CFS and related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome, Fibromyalgia, and Post COVID. OMF adds urgency to the search for answers by driving transformational philanthropy into global research. We have raised over $28 Million from private donors and facilitated and funded the establishment of five prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.

CONTACT:

Heather Ah San

Development and Communications Manager

1-650-242-8669

heather@omf.ngo