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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


   

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.

 
   

EPIDEMIOLOGY of PEM 
Who:

Dr Lenny Jason at DePaul University in Chicago

What:

A survey regarding your experiences of PEM in the past 6 months.  The survey is long, but you can save your place and come back later.

How to participate:

Click here and follow the survey instructions.

When:

Deadline is July 31st, so if you have not yet completed the survey — or if you started, but didn’t finish — please complete it by the end of July!

 
   

STANFORD MEDICAL STUDIES — Brain Imaging studies 
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

 
   

STANFORD MEDICINE — 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

 
   

STANFORD MEDICINE – Brain and tissue bank 
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

 



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