It took 3 years before I received an accurate diagnosis of CFS. To get it, I saw 5 different doctors. Sadly, this is the norm…
Survey results from the IOM Road to Diagnosis report released at the beginning of this year, showed that most patients don’t receive a ME/CFS diagnosis for well over a year after symptoms present. To get that diagnosis, most patients see on average 4-5 different doctors.
Then consider that from the same report, the vast majority of patients surveyed were ill for over a decade.
5+ initial doctor’s visits over the course of 1+ years then 10 years of follow-up visits = a lot of lab testing!
Being shuffled back and forth to various “specialists” is exhausting. Getting stuck with needles over and over again is terrifying. And really how much of that lab work was really useful? How much provided information that the clinician could act on with a viable treatment option?
For me, all of my results said WITHIN NORMAL LIMITS over and over again. I’d later find there were giant gaps in a thorough assessment of my case. Tests were missing!
I review years’ worth of lab work from ME/CFS patients daily and see missing gaps in assessment time and again. Even worse, I see tests ordered that are inaccurate, redundant, and not clinically useful.
Just like every other aspect of medicine, advances in lab testing procedures are rapidly changing with new technology. Standard tests are replaced with better, more accurate measurements. We can assess your entire genome and that of your microbiome with ease! Laboratory assessment of ME/CFS needs to also evolve to improve time to diagnosis.
I’ve written an eBook to help with just that: All my Test Results are Normal: A Smart Guide to Testing for Chronic Fatigue Syndrome covers what I believe to be the most important and useful measurements to better understand and manage a diagnosis of ME/CFS (and fibromyalgia).
My goal was to create a laypersons’ guide to help you better understand your lab results. The clinical rationale for each test is laid out with extensive footnotes to peer-reviewed research that you or your doctor can access for further study. Included is a glossary of medical terms to help you translate your results.
Find out how to best test for those elusive conditions like non-celiac gluten sensitivity, mold illness, H. pylori, and SIBO. Review your current lab work to see if your doctor thoroughly assessed your thyroid and adrenal function. Learn the value of functional medicine testing. And more…
No one should have to hear, “all results are normal, there’s nothing wrong” ever again.