I imagine a future where if people don’t fully recover after an infection or other trigger for ME/CFS, they are diagnosed early, understood, and presented with multiple personalized treatment options and paths to healing.
While my goal is to provide people recovery insights and hope, I also believe we need more research.
There is compelling new research underway at the Albert Einstein College of Medicine in the Bronx that could lead to a simple diagnostic test for ME/CFS and help unlock personalized treatment options.
We need your help to fund this study:
Here is the research project <– your donation will be matched!
I have teamed up with my friend and fellow advocate Raelan Agle to help get the word out. Raelan and I interviewed the lead researcher about what his team aims to uncover.
My Interview with Raelan and Dr. Greally:
Not only is Dr. Greally brilliant, he truly cares.
One of my favorite parts of our chat is when Dr. Greally shares what he realized after watching the Unrest documentary and having friends back home in Ireland with ME/CFS.
Raelan put timestamps in the YouTube video description if you want to learn more about how Dr. Greally got involved or more details about the science.
What this research will investigate:
Early experiments have shown changes in the genetic expression of people with ME/CFS after exertion. The research team will sequence the genomes of hundreds of people with ME/CFS to pinpoint what genetic differences exist, if any, and potentially identify subgroups. Learn more about the research.
Note: I previously thought genes were fixed things, turns out I was wrong! I learned a lot from our interview, and we only scratched the surface.
Dr. John Greally, a top epigenetics researcher at Albert Einstein College of Medicine and member of the Center for Solutions for ME/CFS multi-institution collaborative, is leading this project with his colleague Dr. Srilakshmi Raj, a population geneticist.
We connected with Dr. Greally through a fundraising platform called Kernls, where donations go directly to research labs.
Why I’m excited:
This research could unlock potential targeted treatments. In the more immediate future, it could lead to a diagnostic test. It took me over 2 years to get a proper diagnosis (here’s my diagnostic odyssey).
Nearly everyone with ME/CFS knows what it’s like to drag yourself from doctor to doctor, only to be dismissed. And then to desperately search for answers on Google trying to get your life back.
It doesn’t have to be this way. We will change this together.
How your donation would help:
$5 could help build momentum, $20 could help offset lab fees, $75 could sequence the genome of 1 patient, $250 could fully cover the cost of 3 patients (these are rough estimates).
Your gift will be doubled:
My husband and I and an anonymous donor are matching donations to fund this $40,000 study, so we’re halfway there! (Ooh ohh, livin’ on a prayer…)
I understand if you can’t contribute much (I lost all my personally-earned money when I had ME/CFS). Any little bit truly is appreciated.
Friendly Disclaimer: Dr. Greally’s interview with us is about his research only and is not an endorsement of anything or any method shared on my site or channels or Raelan’s. Nothing on this blog is medical advice.