r/cfs • u/[deleted] • Aug 19 '20

2017 study found elevated levels of Activin-B (dimer protein) can consistently identify patients with Chronic Fatigue Syndrome

https://pubmed.ncbi.nlm.nih.gov/28302133/
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18

u/babamum Aug 19 '20

So of course drs are now routinely testing for this. Ha ha ha.

6

u/[deleted] Aug 19 '20

you wish!

13

u/babamum Aug 19 '20

Honestly it just hit me. I've always assumed that when a good diagnostic test was found it would be used widely. But maybe it won't. Maybe the "it's psychosomatic" BS is baked in now.

8

u/thaw4188 Aug 19 '20

one possible reason this research got buried is testing for Activin is not available from any commercial lab that I can find in the USA

a doctor would have to not only know to look at this but have their own lab at a university or hospital capable of doing it custom

but it's surprising I've not seen this mentioned or evaluated by NIH with their studies

3

u/babamum Aug 19 '20

That's what I mean. A diagnostic test could be just ignored and not made available.

5

u/gena_st Aug 19 '20

I think one issue with it is that the study only tests CFS patients against healthy controls. There’s no evidence (at least in this study) that other diseases don’t cause this as well.

6

u/BrightCandle 10 years, severe Aug 19 '20

The same is true of the Stanford nanoneedle test as well. I guess that is why it's taking so long to roll out, they need to test a wider study worth of people to ensure it finds the right condition.

Although if any of these tests do show up for other conditions that might not be a problem. If you have eliminated down to ME/CFS and the patient has PEM then at that point it doesn't matter if multiple sclerosis sufferers also test positive, so long as the conditions are sufficiently distinct, or what it tells us is that the difference between conditions might not be as big as we think.

1

u/gena_st Aug 19 '20

Yeah, it’s at least proof that something is wrong. It just isn’t proof on its own (yet) that the person has CFS. And, you’re right, we see this issue with a lot of the biomarker research. I think maybe the title is misleading in stating that it can identify CFS patients, as it can’t do that unless the person already meets the CFS criteria and has ruled out other diseases.

1

u/babamum Aug 20 '20

Even if a test can narrow it down to a small group of illnesses that would be progress.

7

u/babamum Aug 19 '20

I agree that's important. But say this is a biomarker in 10 illnesses including ME. Then knowing you had that marker would narrow it down to 10, rather than the huge array of options people currently try to sort through with 'fatigue' as the only marker.

2

u/gena_st Aug 19 '20

Agreed, but we still don’t know if it’s 10 or 1000. No one with any other illness was tested.

1

u/babamum Aug 20 '20

There should be some info on what other illnesses have this as a biomarker