• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Diagnosis criteria confusion?

L

lenora

Senior Member
Messages
4,694
I was diagnosed because of my symptoms and by a neurologist doing tests to rule out other autoimmune diseases. A good rheumatologist should also be able to diagnose you. It's easier if fibromyalgia (FM) also accompanies your symptoms. Not easier to live with, but easier to get a diagnosis if you also have it.

Many things have to be ruled out....and it takes someone at the very top of the medical field to make certain the proper tests are given and other illnesses ruled out. MRI's with and without contrast are helpful, certain nerve conduction tests, trigger points and the pain caused, and a host of other neurological conditions.

I hope you find someone personable as it makes all the difference in the world. Modern equipment is a must, so please bear that in mind. If possible, have the MRI's read by as many doctors as possible, not just reading of the report itself. Often one doctor will pick up something another one has missed. Good luck. Yours, Lenora.
 
Rebeccare

Rebeccare

Moose Enthusiast
Messages
9,049
Location
Massachusetts
zee89 said:
How do you actually get diagnosed with ME/CFS? Is it literally ruling out all other things that can cause such symptoms?
Click to expand...
Not anymore! Now there's actually diagnostic criteria. This is the one used in the US (although there are others):
1634128236282.png


I think it is worth trying to rule out other causes of the symptoms in case it's another condition that is treatable. Or in case there is another medical condition in addition to ME/CFS.
 
L

lenora

Senior Member
Messages
4,694
Hi @Rebeccare......That's the first time I've seen such a basic chart that anyone can understand.

I agree with you though, we do have to rule out other illnesses b/c many (especially neurological) can give the same symptoms. You can't just assume that you have ME/CFS based on what you think. It will put your mind at ease to know for sure. Yours, Lenora.
 
L

lenora

Senior Member
Messages
4,694
Well @zee89, researchers are still working on the root cause of ME/CFS/FM. It's a problem and research has been going on for as long as I've had this illness.

Personally I don't think one root cause will ever by found, but a few if not many. At least today we have researchers especially trained in their area of expertise, something that was lacking for many years. There is hope for you younger people and I hope it's fulfilled soon. Yours, Lenora.
 
You must log in or register to reply here.