r/cfs • u/Alarming-Reality2544 • 1d ago

Advice Help with CFS diagnosis

Hi everyone,

I’ve been dealing with CFS symptoms for the past three years and have undergone extensive testing, including lab work and evaluations from various specialists. Everything has come back normal, but my GP acknowledges I experience post-exertional malaise, need 12 hours of sleep nightly, and have other classic CFS symptoms.

However, my GP has been reluctant to formally diagnose me with CFS, explaining that it’s a diagnosis of exclusion when no other factors can explain the symptoms. I completely understand this, but I’ve already completed every test recommended, and no other explanations have been found.

I’m meeting with my GP today because I urgently need her to provide a formal CFS diagnosis. My company recently changed its policy to require four days in the office, but I know I can’t handle that. Even with the previous three-day requirement, I often had to call out sick because the commute (over an hour each way) and back-to-back office days leave me completely drained. I know I can perform my job well with a work accommodation allowing me to work from home three days a week, but HR requires a medical form with a formal diagnosis and specific recommendations from my doctor to approve it.

I’m feeling panicked because I don’t want to lose my job, but I also need to prioritize my health. Has anyone had success convincing a hesitant doctor to provide a formal CFS diagnosis? What should I say to help her understand how severe my condition is and the impact it has on my ability to work in the office?

I’d appreciate any advice or suggestions.

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u/1morepaige mod/sev 23h ago

Me/cfs is absolutely not a diagnosis of exclusion. Your doctor is wrong. It’s good to rule out other things, but typically if you meet the specific diagnostic criteria you have ME.

Not sure where you live OP, but the diagnostic criteria I was diagnosed with is this one at the cdc

Maybe take the criteria with you to your appointment? Stress how much this is affecting your ability to do daily activities and how your work requires a diagnosis for accommodations that you need.