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    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.

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Best tests for ME?

What are the best tests to really nail down what is going on? (Realizing that there is no definitive test yet for ME or CFS. )

The better I know what is actually going on, the more likely I can find a solution - or at least a partial solution.

Some people have serious cardiac effects (e.g., IVRT) that can be detected and measured with the right test. Some people show large impacts on SPECT scans.

Something I want to figure out is if it's ME specifically, which is very possible but not yet certain.

What tests would you suggest? Any other advice?

EDIT: At the suggestion of @andyguitar, here's some info about some of my symptoms.

As there's so much to list plus there's a lot I can't remember right now due to brain fog, I'll just list a few highlights.

Severe lack of energy, along with post-extertional malaise (PEM). On a typical day I have to spend several hours lying down and for a large portion of the day I'm not able to get much of anything done. What I am able to get done usually gets done quite slowly as that's as fast as I can go. I wouldn't be able to live independently. It's terrible.

Major brain fog. Sometimes I can't think clearly enough to read properly. There's a vast amount of basic stuff that I am no longer able to do, such as keep track of my own medical appointments.

I'm prone to orthostatic hypotension. I've actually blacked out and collapsed from this before.

Cardiovascular effects have been apparent. For example, I went from being able to do pretty serious hikes (e.g., 10 to 15 miles through the mountains) to getting winded after walking for just a couple of minutes. This was NOT due to deconditioning! Like other symptoms, the severity can and does change over time. (Out of curiosity, has anyone with ME observed changes in their IVRT measurements? Or are they equally bad all the time?)

Any insight or help would be much appreciated.
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