News from the Open Medicine Foundation

One year ago, we launched OMF StudyME Registry, a groundbreaking initiative designed to streamline the process for researchers seeking participants for studies on ME/CFS, Long COVID, Fibromyalgia, and other post-infection diseases. 

Surprisingly, one of the most common challenges researchers face is the difficulty of finding participants for their research studies. That is why we created OMF StudyME: a free global participant registry to help researchers connect with people who want to participate in research studies of ME/CFS, Long COVID, and related post-infection diseases.

Today, OMF StudyME serves as a vital participant registry, creating a bridge between researchers and individuals eager to contribute to scientific research on these complex diseases.

Since its launch, OMF StudyME has gained significant traction, with over 9,000 participants from various countries worldwide signing up within the first year alone.

Notably, OMF StudyME has already helped recruit for studies at:

  • University of New England, Australia
  • Bateman Horne Center, Salt Lake City, US
  • Scripps Medical Center, San Diego, US
  • Mt Sinai, New York, US
  • Harvard Medical School: Beth Israel Deaconess Medical Center, Boston, US
  • Stanford University, Stanford, US

Everyone is welcome.

Encourage others to join!

Researchers are interested in individuals suffering from specific illnesses as well as healthy individuals who can act as “controls” or reference points. You have the power to help researchers to find answers for ME/CFS and Long COVID. Signing up is easy and takes less than five minutes. Sign up now!

If you’ve already registered, consider sharing OMF StudyME with your friends and family. Click here to use our toolkit with pre-written posts to help you spread the word.

We are excited to share the upcoming launch of OMF’s first clinical trial, the Life Improvement Trial (LIFT). The LIFT investigates two drugs, low dose naltrexone (LDN) and pyridostigmine (Mestinon), which have been known to relieve symptoms in some patients with ME/CFS.

As with any treatment trial, the primary goal of the LIFT is to relieve patients’ symptoms, especially pain, brain fog, and orthostatic intolerance, which have been shown to be affected by LDN and Mestinon. We know that these treatments won’t work for everyone, though, so the trial will also investigate differences between responders and non-responders.

The LIFT is a double blind, placebo controlled trial that randomizes participants into one of four groups:

  1. LDN + Mestinon
  2. LDN + placebo
  3. Placebo + Mestinon
  4. Placebo + placebo

Neither the doctor nor the participant will know which arm of the trial they’ve been placed in, which ensures that the results can’t be biased by knowing whether they’re taking the drug(s) or the placebo.

Each participant will undergo treatment for 90 days. During that period, many types of data will be collected, including:

  • SHAPE tests: cardiopulmonary function
  • Physical measurements: vitals, height, and weight
  • Blood and urine samples: proteins, metabolites, and more
  • Garmin device data: heart rate, physical activity, and more
  • Cognitive tests: reaction time, attention, and more
  • Surveys: participant-reported symptoms, physical function, and more

To learn more about the LIFT, see the listing on clinicaltrials.gov here.

submitted by Karolina Kutilek

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