Pueblo Woman’s 3 year Road to Diagnosis

Jillian WEBB

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.

MEAction CO member to be in NIH study

nih-study

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.