The future was bright for a Connecticut woman and her son in 2010.
“We were both headed for major transitions in our lives – he into his first job after graduating college Phi Beta Kappa and then backpacking through Asia, where he climbed in Tibet and Japan,” recalls the mother. “Me? I was retiring after 31 years in corporate America to do some traveling of my own. And to top it off, my son had met a lovely young woman that he fell in love with. As you can imagine, both of us were very excited about what the future held in store.”
The only downside was a case of giardia that her son acquired in Asia that didn't seem to respond to treatment. Then, literally overnight, things changed.
One day that summer, he woke up with all the typical ME/CFS symptoms: unrefreshed sleep, cognitive issues, easy exhaustion, sensitivity to light, continued gastro-intestinal issues. It took seven frustrating months of going from one doctor to another and sorting through misleading information before the pair found a physician who was able to confirm what the son already knew: he had ME/CFS.
He had just started a new job. But within a few short months, it became clear that he was not going to be able to keep up and that trying to do so was causing him to get sicker and sicker. In March 2011, he took a leave of absence; ultimately, he had to resign.
“Since then, he’s had to move home and put his life and his entire future on hold. Like all patients out there with this dreadful disease, he just wants to get better and get back to his life,” says his mother. “This experience has taught both of us how challenging it is for patients with complex illnesses to get decent medical care, especially illnesses that affect the neurological and immunological systems, such as ME/CFS, fibromyalgia, Lyme disease and Gulf War Illness. The lack of understanding and of diagnostic biomarkers means that patients are often misdiagnosed, given poor advice or just completely dismissed by the medical community. And once diagnosed, there are no cures; there’s little more than symptom relief.”
The pair believes that the situation will only change if there is quality research into the biological pathologies underlying ME/CFS. “This is the kind of research that I know the CFIDS Association is committed to funding. And that commitment results in studies like those done by the Lights on post-exertional gene expression and the systems biology work done by Dr. Broderick – both ground-breaking work,” says the mother. “This is research that can lead to the identification of the biomarkers and biologically based treatments that are so desperately needed, research that can bring the same level of care to patients with ME/CFS that patients with other serious diseases have today.”
She was spurred by the matching grant opportunities offered through THECatalystFUND. “I was excited at the opportunity to multiply research donations through the matching grants,” she says, “especially now when it appears that research is finally close to helping patients. The time is now! Thank you to CFIDS Association and to the donor families who made this possible!”
Click here to learn more about THECatalystFUND and to read other Catalyst profiles.
Your gift to THECatalystFUND will help speed discovery and transform the way that CFS research is conducted. Online gifts can be made through our secure donations page at: http://bit.ly/2011fund. Donations are tax-deductible to the full extent permitted by law.