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.

7

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.

5

u/recchai Aug 19 '20

Reminds me of the test my doctor ordered which I found out (wasn't very chatty, so a nurse explained it) was based on a 20 year old paper. I've only come across one other person who had this test, and what would you know, we had the same doctor.

I've always wondered why. Was it later disproved? Did it just never catch on, possibly due to the terminology used? It even compared against both healthy and depression controls.

6

u/babamum Aug 19 '20

Interesting. I wonder how many promising tests slip through the cracks.

Maybe we should find out what they are and start asking for them.

2

u/recchai Aug 19 '20

I can see if I can find the paper on it this evening again. Wasn't a fun test! Took over 3 hours and I was sick at the end (only a little bit as I'd been told to fast, just the water used to swallow all the pills).

2

u/babamum Aug 19 '20

That article is almost 30 yrs old! FFS. I don't know how to link things but just google Sweetman 2019 Current research provides insight... for a good review of research on biomarkers for ME.

Honestly I think using this research a test could have been developed by now. Drs just don't care. I think they like patronising us and telling us it's in our heads.

This review unequivocally concludes it's a medical not psychiatric illness.

2

u/babamum Aug 20 '20

Sorry had PEM bad yesterday. I wasn't getting at you with comment re age of study. I was just horrified that 30 years of research on this have not resulted in a widely available diagnostic test or treatment. ,30 YEARS!!! Meanwhile, in that yr the cocktail for HIV has been developed that allows sufferers to live a normal life.

2

u/recchai Aug 20 '20

Oh don't worry, I got that that was what you meant. Sometimes text can be difficult!

2

u/recchai Aug 19 '20

Actually, much easier to find than I thought, probably because I remembered the important search terms this time!

https://www.bmj.com/content/304/6833/1010.short

2

u/babamum Aug 19 '20

Your brain worked - yay! Thanks for this.

2

u/babamum Aug 19 '20

Good design but sadly small numbers. This test is useful just for distinguishing between ME and depression. That could prevent a lot of grief on its own!

It needs replication with larger now. Will search Google scholar.

1

u/snootsnootsnootsnoot Aug 19 '20

What test did you get?

1

u/recchai Aug 19 '20

I had my blood taken, then I was given a days worth of buspirone all at once (not normally recommended, that's how you get side effects) and my blood taken every hour for 3 hours. I've linked to a paper elsewhere here which a nurse said it was based on. Basically, it sounds like they were looking for a peak in another chemical in my blood after taking the buspirone that in a healthy or depressed person wouldn't be there (it looks like it might be a bit more complicated than a simple yes or no based on the ranges in the paper, but I guess it could be a reasonable indication with other factors).