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#MEAction Research Actions

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#MEAction aims to grow the scientific field through outreach, education, and fellowship opportunities for young investigators, and by empowering patients to understand, engage with and participate in research.

How to get involved

Researchers and clinicians

  • If you’re a researcher interested in learning more about this field, start here to browse a list of resources.
  • If you’re currently in the field, we’d love to support you by disseminating information about your work to the community and helping with press outreach.
  • We’re also always looking for researchers and students to contribute to MEpedia.

To learn more, email jaime@meaction.net.

Patients & community

There are so many ways you can help support research and the generation and dissemination of scientific knowledge about ME.

Contact jaime@meaction.net to learn more!



Current research trials enrolling


 

 
GENERALIZED RESEARCH / MULTIPLE STUDIES

Who: Lucinda Bateman, Bateman-Horne
What: Participants will:

  • Receive a comprehensive clinical evaluation
  • Answer questionnaires
  • Provide blood samples
  • Commit to a yearly visit to Bateman-Horne in Salt Lake City, Utah (3-5 years, e.g.)

Information will be shared with multiple research groups searching for biomarkers for FM and ME/CFS.

How to participate: Click here to start the research eligibility form. (If this does not work, click on the link under ‘additional information’).
When: Ongoing
Additional information: Click here to see all of Bateman-Horne’s recruiting studies.
   
 
EXERCISE TESTING

Who: Cornell Center for Enervating Neuroimmune Disease
What: The Center is collecting information from both ME patients and sedentary controls.

  1. You will first have a quick phone call to determine eligibility.
  2. If eligible, you will meet with a doctor (theirs or yours) to be examined or for blood and urine tests.
  3. Then you will complete questionnaires.
  4. Finally, you will do a two-day CPET (two exercise tests separated by 24 hrs), with blood collection before and after the test.
  5. 10 days before and 10 days after, you will wear a wrist-watch device (presumably a FitBit or similar) to monitor your vitals.
How to participate: For Ithaca, NY area contact Betsy Keller at 607-274-7948 or MECFSstudy@ithaca.edu

For Torrance, CA contact Jared Stevens: 209-599-7194 or info@workwellfoundation.org

When: Ongoing
Additional information: The recruitment flyer can be found here.
 
 
DRUG TRIALS

Who: Lucinda Bateman, Bateman-Horne
What: A small, interventional trial of a drug for ME.
How to participate: Click here to take the survey to find if you are eligible.  If this link does not work, click on the link under ‘additional information’ and find the trial.
When: Ongoing
Additional information: Click here to see all of Bateman-Horne’s recruiting studies.
   
GENETICS

Who: Dr. Klimas and Dr. Bested at NSU (Institute of Neuro Immune Medicine)
What: Collect genetic data from 23andme or ancestry.com for 10,000 patients.  Computer learning programs will search for biomarkers that can be used to develop drug targets and diagnostic tests.
How to participate: Email MECFSGenes@Nova.edu stating you wish to participate.  In return, you will receive an encrypted email with instructions.  You will be given a questionnaire and a way to upload the file that contains your genetic data.  This will be stored in RedCAP, a secure database used for science and medicine.
When: Ongoing
Additional information: Click here to learn more.
 
BRAIN IMAGING

Who: Cornell Center for Enervating Neuroimmune Disease
What: The Center is collecting information from both ME patients and sedentary controls ages 21-65.

  1. You will first have a quick phone call to determine eligibility.
  2. If eligible, you will meet with a doctor (theirs or yours) to be examined or for blood and urine tests.
  3. Then you will complete questionnaires on mental and physical health.
  4. You will do a two-day CPET (two exercise tests separated by 24 hrs), with blood collection before and after the test.
  5. You will do MRI and PET scans as well.

Participants will be compensated for their time.

How to participate: Contact Xiangling Mao by phone at (212) 746-2632 or email at xim2004@med.cornell.edu
When: Ongoing
Additional information: See the recruitment flyer here.
   

 

Who: Dr. Montoya and Dr. Zeineh at Stanford School of Medicine
What: Replication of their 2014 diffusion MRI study showing white matter abnormalities in patients
How to participate: Email tlieb@stanford.edu or complete an online screening to determine eligibility by clicking here: https://is.gd/stanfordcfsbrainmri
When: Ongoing
Additional information: Click here to read more about the study from Stanford Medicine.

Click here to see the published study in Neuroradiology.

   

 

Who: Dr. Montoya and Dr. James at Stanford School of Medicine
What: PET imaging using a novel tracer that can detect inflammation in the brain
How to participate: email tlieb@stanford.edu to learn more
When: Ongoing
 
 
NEUROENDOCRINE

Who: Dr. Montoya and Dr. De Bellis at Secondary University of Naples
What: Investigation of neuroendocrine systems in female ME/CFS patients. This includes evaluating all sex hormones and correlating with symptom severity. Additionally, the study will use dynamic endocrine testing. Samples will also be sent to Dr De Bellis, who will test for autoantibodies to brain proteins.
How to participate: Email tlieb@stanford.edu or complete an online screening to determine eligibility: https://is.gd/cfssneuroendocrine
When: Ongoing
 
 
BRAIN / TISSUE BANKS

Who: Dr. Montoya and Dr. Plowey at Stanford School of Medicine
What: Brain and tissue bank to investigate ME
How to participate: Email tlieb@stanford.edu
When: Ongoing

Research Studies

Enrolling: White Matter Evaluation with Stanford University

Researchers at Stanford University have discovered that the brains of patients with ME display abnormalities in the white matter within ...
Read More

Take the NYU Research Survey about your ME Experience

I’m a researcher at NYU interested in the experiences of people with ME/CFS in the U.S ...
Read More

Enrolling: Bateman-Horne InTime Drug Intervention Trial

The InTime Trial aims to assess the effects of the investigational drug, CT38, in terms of its safety and effectiveness ...
Read More

Enrolling: Stanford Neuroendocrine Investivagtion

Researchers from Stanford University aim to evaluate the endocrine system in female ME patients to learn how the hypothalamic-pituitary-adrenall (HPA) axis functions in ...
Read More

Enrolling: Cornell Brain Imaging

Cornell Center for Enervating Neuroimmune Disease aims to collect brain images (MRSs) from individuals with ME to study oxidative stress ...
Read More

Enrolling: 23andMe Genetic Testing Study

The Institute of NeuroImmune Medicine is collecting genetic data from 23andme or ancestry.com for 10,000 patients. Their aim is to ...
Read More

Enrolling: Stanford School of Medicine Brain Tissue Bank

  Brain tissue banks are able to provide ME researchers with samples to keep their research moving forward; Dr. Montoya and ...
Read More

Enrolling: Cornell Exercise Testing Study

Who: Cornell Center for Enervating Neuroimmune Disease What: The Center is collecting information from both ME patients and sedentary controls. You will first have a quick ...
Read More

Enrolling: Bateman-Horne Center Biomarker Study

Help advance biomarker research! The Bateman-Horne Center is actively recruiting patients and healthy controls who are eager to participate by ...
Read More

Research News

UK: More than 250 GPs Attended ME Workshop at the RCGP Conference

A week after the recent RCGP Annual Primary Care Conference & Exhibition held in Glasgow on the 4th – 6th ...
Read More

Enrolling: White Matter Evaluation with Stanford University

Researchers at Stanford University have discovered that the brains of patients with ME display abnormalities in the white matter within ...
Read More

Emerge Australia Releases Report on National Survey of ME Patients

Emerge Australia has released a report on the findings of a survey of more than 600 Australians with ME/CFS. The ...
Read More

POTS and Beyond Conference 2018

The POTS and Beyond conference held in Salt Lake City this past weekend brought together experts in the field to ...
Read More

Take the NYU Research Survey about your ME Experience

I’m a researcher at NYU interested in the experiences of people with ME/CFS in the U.S ...
Read More

Enrolling: Bateman-Horne InTime Drug Intervention Trial

The InTime Trial aims to assess the effects of the investigational drug, CT38, in terms of its safety and effectiveness ...
Read More

Join the Stanford Community Symposium via Livestream

The Stanford Genome Technology Center will host the Second Annual Community Symposium on the Molecular Basis of ME/CFS, sponsored by ...
Read More

NIH Creates Council to Advance ME Research

The National Institutes of Health (NIH) has formed a new council focused on how best to advance research into myalgic ...
Read More

Enrolling: Stanford Neuroendocrine Investivagtion

Researchers from Stanford University aim to evaluate the endocrine system in female ME patients to learn how the hypothalamic-pituitary-adrenall (HPA) axis functions in ...
Read More

Enrolling: Cornell Brain Imaging

Cornell Center for Enervating Neuroimmune Disease aims to collect brain images (MRSs) from individuals with ME to study oxidative stress ...
Read More