How To Find A Doctor When You Have ME/CFS, Because The Process Can Be Challenging

[Andy]

Finding a doctor shouldn't be that difficult, but between scheduling and insurance, it's already a lot of hoops to jump through. Add in a chronic illness that doctors may not be familiar with, and it can feel nearly impossible. Living with chronic fatigue syndrome, also known as myalgic encephalomyelitis (ME/CFS), can mean searching for a diagnosis for a long time — and then, working with a doctor to help you manage it. Finding a doctor who can treat CFS/ME effectively can be a frustrating feat for patients, since many physicians don’t fully understand the condition, but it can be done.

ME/CFS is *not* just being tired — it’s much, much worse. Since ME/CFS can’t be detected via blood tests (yet), doctors diagnose it via a process of exclusion. They basically rule out every other possible illness, while observing the symptoms that the patient is reporting in order to conclude that ME/CFS is the underlying disorder.

https://www.bustle.com/p/how-to-fin...cause-the-process-can-be-challenging-15536013

 

[rvallee]

They basically rule out every other possible illness, while observing the symptoms that the patient is reporting

Oh, man, that sounds awesome. Where can I get some of that? 10 years ago, please. Now, kinda too late for that.

 

[Snowdrop]

I only skimmed this.

It sounds like the young woman who wrote the article did her homework. She even mentions gaslighting of the community.

 

[DokaGirl]

Pretty positive article compared to what many go through. But a good introduction for newbies.

Five/six percent recovery noted in the CCC. Good to work toward recovery, but realistically, not very possible at this point without effective treatments, although there are some medications that may help with things like OI.

"Improvement" noted several times in article. If memory serves, I recall a pwME saying improvement meant being able to stand up and make a salad. We need definitions for recovery, and improvement, if either of those are possible.

Bringing a long list of symptoms to doctors may cause eye-rolling, and confusion for the physician. IME they don't want to see big lists - we have them - ME is multi-faceted, but I've found long lists to be non-productive, especially when most doctors want to deal with one issue at a time. Longer lists may be fine for specialists.

Overall, a good article covered lots of bases.