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

Frequently Asked Questions

Find answers to the questions we get asked the most about OMF.

General Questions

OMF funds research projects at our six established Collaborative Research Centers (CRC) at Stanford, the Harvard Affiliated Hospitals, Uppsala University, The Université de Montréal, and the University of Melbourne.

We are not typically involved in the research process. Our role is to ensure that each CRC has the financial resources required to conduct critical research into ME/CFS and related chronic, complex diseases.

Each CRC operates independently and recruits research participants from clinicians that they collaborate with locally. CRCs are not able to respond to inquiries from the general public. Additionally, OMF cannot introduce constituents to researchers.

When OMF seeks participants in any data gathering research project, we will email those requests to our entire community. If you don’t already receive email updates from OMF, you can sign up here.

OMF cannot provide personalized medical recommendations for doctors. However, we can offer the following helpful resources and will continue to share reliable, verified information, as it is made available. Our goal is to empower you to take care of your health today, while we search for answers for tomorrow:

  • Visit OMF’s resource center to find a list of helpful information for caregivers and people with ME/CFS and related diseases, including handouts to share with your doctor.
  • Share the US ME/CFS Clinician Coalition Diagnostic Guidelines with your medical provider.
  • Visit the U.S. ME/CFS Clinician Coalition’s website: https://mecfscliniciancoalition.org. The website includes resources that may assist with diagnosis of ME/CFS and insight into clinical management, opportunities for continued medical education (CME) courses on ME/CFS, guidance on disability or school/work accommodations, and more.

OMF is not authorized to give medical advice or comment on personal medical concerns. Because OMF is a fundraising organization, our job is to ensure that the six OMF funded Collaborative Research Centers have enough resources to continue their work to end ME/CFS and related diseases with urgency. However, we recommend taking a look at the following resources, which may help navigate the complex world of ME/CFS and related chronic complex diseases:

  • Visit OMF’s resource center to find a list of helpful information for caregivers and people with ME/CFS and related diseases, including handouts to share with your doctor.
  • Print the US ME/CFS Clinician Coalition Diagnostic Guidelines to share with your medical provider.
  • Visit the U.S. ME/CFS Clinician Coalition’s website: https://mecfscliniciancoalition.org. The website includes resources that may assist with the diagnosis of ME/CFS and insight into clinical management, opportunities for continued medical education (CME) courses on ME/CFS, guidance on disability or school/work accommodations, and more.

OMF does not offer patient services and is not directly involved in patient care. As a fundraising organization, OMF’s role is to ensure that the six OMF-funded Collaborative Research Centers, (CRC)s have the resources necessary to continue our mission to end ME/CFS and related chronic complex diseases with urgency.

However, we can offer the following helpful resources and will continue to share reliable, verified information as it is made available. Our goal is to empower you to take care of your health today, while we search for answers for tomorrow.

  • Visit OMF’s resource center to find a list of helpful information for caregivers and people with ME/CFS and related diseases, including handouts to share with your doctor.
  • Print the US ME/CFS Clinician Coalition Diagnostic Guidelines to share with your medical provider.
  • Visit the U.S. ME/CFS Clinician Coalition’s website: https://mecfscliniciancoalition.org. The website includes resources that may assist with the diagnosis of ME/CFS and insight into clinical management, opportunities for continued medical education (CME) courses on ME/CFS, guidance on disability or school/work accommodations, and more.

OMF does not currently have a specific timeline for when diagnostic tests, treatments, or a cure may become available. As an organization that values transparency, we will continue to provide verified updates from our funded research centers as soon as they are available.

If you’re not already subscribed, you can sign up for OMF’s email here. We will send regular correspondence about the latest news from our research centers directly to your inbox.

Due to the high demand of requests, OMF cannot promote personal fundraisers for medical expenses at this time.

OMF is not authorized to review or comment on personal medical information. We are not directly involved in the research process. Our role is to ensure that each Collaborative Research Center has the financial resources required to run OMF funded studies.

If OMF seeks participants in any data gathering research project, we will email those requests to our database. If you don’t already receive email updates from OMF, you can sign up here.

Please email info@omf.ngo with your name and preferred contact information. We will forward your information, and a team member will get in touch if they are interested.

There is anecdotal evidence that mold is a possible trigger for ME/CFS.

OMF is funding biomolecular research and diagnostic and treatment options for ME/CFS and related chronic complex diseases. While we hope to identify the many triggers for ME/CFS, we must first identify a biomarker or biological molecule found in blood, other body fluids, or tissues that is a sign of the disease. A biomarker may be used to see how well the body responds to a treatment for a disease or condition and allows for conclusive diagnosis.

 To learn about OMF funded research projects, please check here.

We cannot forward information to the researchers or share contact information.

Currently, OMF is using volunteers for administrative functions on a seasonal basis. 

Questions Regarding Donations to OMF

Thank you for your interest in supporting our mission! You can send a check via mail by making the check payable to “Open Medicine Foundation.”

Address:

Open Medicine Foundation
29302 Laro Drive
Agoura Hills, CA 91301, USA.

For more information about different ways to donate to our mission, please click here.

Thank you for joining us in our mission to fast-track critical research into Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) by starting your own fundraiser!

We recommend taking a look at our digital fundraising toolkit: http://bit.ly/FundraiseToolkit. The toolkit contains simple, easy-to-use guides for launching fundraisers on Facebook and CrowdChange, or in-person events. It includes downloadable templates to help spread the word on social media or email.

OMF has partnered with MAECENATA STIFTUNG TRANSNATIONAL GIVING to accept donations in the countries listed below and issue tax receipts. Please note that donations made through Maecenata are paid to OMF on a quarterly basis. We will send you an acknowledgement once we have received your gift.

  • Belgium
  • France
  • Germany
  • Spain
  • United Kingdom

To learn more, visit the International Donations page on our website.

 

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 six 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