Remarks at the Denver Millions Missing Event for ME, May 11, 2019
By Lila Rosenthal, MD
Dr. Rosenthal (center) at MM2019
Thank you for the warm welcome and kind introduction. It’s an honor to be here with you today to raise our voices to raise awareness about ME. It was difficult for me to figure out what I could say to you long-suffering patients and caregivers, who have been marginalized and at times dismissed by my colleagues. If I’m honest, if you would have seen me before I became “educated”, I might have treated you without the respect and validation you deserve. Today I want to tell you, from the bottom of my heart, that I am sorry on behalf of myself and my peers.
Most of what I know about ME I have learned from my patients. And so in light of today’s theme, Finding your Allies, I want to say some words about how you can best educate your practitioners to be able to get the best possible care while we wait for new data and new treatments to emerge.
Find your Allies: Try not to see busy, harried, uninformed doctors as the enemy.
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Jillian McQuitty Webb – Facebook photo
Unfortunately it’s not uncommon for someone to struggle for years before finally getting diagnosed with ME. Jillian from Pueblo went to more than 30 doctors and medical specialists and underwent more than 60 medical tests in 3 years before getting diagnosed at the Mayo clinic in Scottsdale.
Jillian suffers from severe fatigue, dizziness, cognitive issues and other debilitating symptoms. But the former cosmetologist looks well so people often don’t take her illness seriously.
Reluctantly, she went public with her diagnosis and turned to crowd funding to help pay for a trip to Salt Lake City. Jillian will be treated at the Bateman Horne Clinic, one of the ME specialist clinics in the country and the closest to Colorado. In addition to education and treatment and, more importantly to her, engage in research that could help lead to a cure for ME/CFS.
MEAction Colorado welcomes Jillian to our community and wishes her well on her journey.
Here’s the link to the full story in the Pueblo Chieftain by Zach Hillstrom.
Colorado #PWME Alison Sale was accepted into an ME study at the NIH, the “NIH Intramural Study on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.” Alison writes that “the criteria is very specific and I feel so lucky that I qualified and will have more answers soon.” The NIH will be covering all expenses including travel to Bethesda and a stipend and conducting many necessary tests and providing consultations with specialists.
The study took a lot of work to get into–for Alison it involved “submitting LOTS of records and sending them a list of every provider I have seen since several years before I got sick even including pediatricians,” and will no doubt take a lot of mental and physical energy during the study, but will absolutely be worth it to get some well-deserved answers for herself and to contribute to ME research.
As far as we know, the NIH is still accepting participants who qualify for their very specific criteria which are listed at the above link. There seem to be a few criteria groups, including healthy control group and Lyme Disease group, and some outpatient groups. The NIH website says, “The objective of this research study is to begin to understand the clinical and biological characteristics of ME/CFS.” The study seems to be very extensive and to be done by solid ME researchers.
Alison, we all thrilled for you and hope you get answers about how to improve your situation and we all appreciate the large effort you went through, and will be going through, in order to advance ME research! And perhaps there are others in our CO community who might check this out and see if they qualify as well.