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

Transforming Diagnosis and Treatment of Chronic Complex Diseases | #TripleGivingTuesday

From the desk of Ronald Tompkins, MD, ScD
Chief Medical Officer, Open Medicine Foundation

#TripleGivingTuesday Research News

Transforming the Diagnosis and Treatment of ME/CFS, Post-Treatment Lyme Disease and Fibromyalgia

During the final week of Triple Giving Tuesday, I’m delighted to share an update with you about a remarkable project that aims to drastically improve and streamline the diagnosis and treatment of people with chronic complex diseases.

As you may know from personal experience, many primary care physicians lack the dedicated time to properly diagnose chronic complex diseases such as ME / CFS, with the result that most people with these diseases are either not diagnosed or misdiagnosed.

We are creating a “Personalized Automated Symptom Summary” or PASS, which is a tool that  bridges  the communication gap between patient and doctor,  helping patients to more accurately and efficiently convey their symptoms to their treating physician.

This project is under my direction as co-lead of the OMF funded Harvard ME/CFS Collaboration, in partnership with Dr. Lewis Kazis at the Boston University School of Public Health, with extensive participation and funding from OMF and its supporters. Using machine learning and artificial intelligence, the PASS tool will enable the patient to create a symptom summary in less than 30 minutes that accurately describes their current symptoms in great detail  from their own perspective.

Through this tool, a patient can provide their clinician personalized and specific symptom descriptions and significantly improve their diagnosis and treatment options.

Collaboration is Key

Because many chronic complex diseases have overlapping symptoms, we have engaged a diverse team of experts and advocates 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 tool development. 

This is an exciting and unique opportunity for the Harvard Collaboration to work closely with fellow chronic disease experts and pool our knowledge to improve diagnostic and treatment outcomes for patients with chronic complex diseases. We believe this new tool will facilitate the patient’s initial encounter and suggest testing, treatments, referrals, and follow-up management strategies.       

As of publication, our current list of strategic partners includes:

  • Bay Area Lyme Foundation
  • Massachusetts ME/CFS & FM Association
  • #MEAction USA 
  • Solve ME/CFS Initiative

A Patient-Centered Approach 

So what does all this mean for patients with an undiagnosed chronic illness? Or someone seeking better medical treatment? We envision that the PASS tool will help both the patient and their doctor, providing a more streamlined and personalized healthcare experience for people seeking a diagnosis, for patients managing their symptoms, and for doctors treating those with chronic, complex diseases. 

A Request from Linda Tannenbaum, Founder & CEO/President:

I am very excited about the potential benefit of the PASS tool to improve clinical care! Please join OMF on our journey to transform the diagnosis and treatment of ME/CFS, Post-Treatment Lyme Disease and  Fibromyalgia. Research is never fast. But by donating today, you help ensure that we have the resources necessary to fulfill this project’s promise along with many others to advance the clinical care of people with chronic, complex diseases. 

Learn more about the PASS tool by visiting the OMF funded Harvard Collaboration website, and stay tuned for updates in 2021 about this groundbreaking initiative! 

There’s no better time to give — Your gift of any amount will be tripled from now until December 1, 2020, giving you the exciting opportunity to accelerate these critical research projects and provide hope for people with chronic complex illnesses worldwide. 

Support these innovative projects by donating to OMF’s 2020.

 #TripleGivingTuesday campaign today! 

It’s with your support that we’re leading critical research and delivering hope for millions. 

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.

###

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