CFS diagnostic methods - where are we now?

[WantToGetWell]

I'm wondering what tests are available right now to diagnose CFS?

I realize there is no single test for CFS, many cases of CFS don't show up on any tests, and diagnosis is via a set of symptoms and exclusion of other possible causes.

However, a number of CFS cases do show up on certain kinds of tests. For example, Dr. Jarred Younger of the Neuroinflammation, Pain and Fatigue Laboratory at UAB can detect problems in the central nervous system (e.g., inflammation, cellular metabolic dysfunction) via MRI molecular spectroscopy. (BTW, is there any other research or medical group out there that uses the same methods as Dr. Younger?)

At one point, Dr. Paul Cheney said that if you gave some CFS patients oxygen to breathe instead of regular air, they had a change in heart function that could be measured on an EKG. My recollection is that it was a change in IVRT (isovolumic relaxation time) and it seemed to be a method the body used to prevent people from getting more oxygen into their body and thus limiting what they can do physically. (This would make a certain amount of sense if some other factor at work in CFS is limiting what the body can handle in terms of activity and a change in IVRT to limit oxygen flow is a way of enforcing this.) However, I am not sure if this finding was ever replicated by other people or not and if it's valid or not.

More recently, I've heard that there are new some specialized blood tests that will show up abnormalities on some patients and not on others. (Probably because the causes of CFS are complex.) However, I don't know what these are and where one can get them.

I'm looking for tests that aren't overly difficult to get done and that would help provide laboratory confirmation of CFS and hopefully shed some light on what is going on.

Can anyone help me out?

 

[linusbert]

the canadian consensus document has criteria for diagnosis.
a doctor can give you the diagnosis just by following it and doing a questionaire.
https://me-pedia.org/wiki/Canadian_Consensus_Criteria

there are a lot of "inofficial" blood markers which jump out but i am not sure the medical community came up with a labor to diagnose cfs yet. so far everything seams to be based on questionaires.
(i could be wrong though)


one test which i imagine would be precise for most cfs patients but is not a clinical recognized test, and potentially dangerous:
- if you do a bicycle test , usually moderate or not so bad cases of cfs have almost same function as healthy people.
- but if they repeat that test 3 days later, they will significantly be worse than the first time. where as healthy people would have same result as the first time.

also medical folks could claim you were just to not give your best on the second test.
but i wonder, if they would measure oxygen and lactate , maybe not a test to exhaustion would be necessary as lactate should rise much earlier. if you go to anaerobe zone much earlier than 3 days before, that could be a clear sign, also its not possible to fake that. maybe someone should suggest medical community this.

 

[kushami]

It’s not unique to ME/CFS, but Dr Visser and colleagues in the Netherlands have tested many patients for low cerebral blood flow and found it is very common. Their most recent study looking at this topic had results from 500 patients.

In terms of how difficult it is to get, the testing usually has to be done in conjunction with a tilt table test at an autonomic lab, and only a small percentage of those labs have the Doppler ultrasound equipment needed.

Of the top of my head, here are a few places that can do it:

Netherlands: Stichting CardioZorg

USA: Center for Complex Neurology, Johns Hopkins, University of Utah, Dartmouth Hitchcock, Brigham and Women’s

Canada: University of Calgary

Also, you might wonder whether it would be worthwhile if you don’t feel that you have orthostatic intolerance, or you have not had any unusual findings in an active stand test. But it may well still show low blood flow to the brain, and Dr Visser and colleagues still found blood flow problems in patients who weren’t specifically aware of having orthostatic problems.

Here’s Dr Visser explaining and demonstrating the test:

And another relevant article:
https://www.brighamhealthonamission.org/2019/06/03/expanded-autonomic-testing-helps-to-pinpoint-causes-of-orthostatic-intolerance/

Benefits of getting diagnosed with low cerebral blood flow:
* Treatment is available (not guaranteed though)
* A piece of paper saying you have cerrbral hypoperfusion is hard to argue with (although I wouldn’t put it past some doctors, govt bodies, etc.)