Researchers in Nevada are close to a diagnostic test

[Anomie]

http://nvcbr.org/2017/02/28/nvcbr-researchers-close-in-on-a-diagnostic-test-for-mecfs-patients/

Lots of exciting research going on these days. I wonder how this compares to what the Australians are doing.

 

[weyland]

I'm prepared for both this and the Aussie test to not pan out. I think that a successful biomarker for this disease is going to have to be one that ties closely to the pathoetiology of the disease, and I don't think either of these are it. Unfortunately, because of how long it has taken to understand this disease and how controversial it is, the bar is set extremely high.

Ignoring the fact that both groups findings would need to be independently replicated, preferably by several different groups, I don't think either of these findings are good enough. The Aussie findings are attempting to explain NK cell dysfunction at a slightly lower level. Well, we already know that NK cell function is disturbed in this disease (and several others) and we already have a test for this and have for many years, but it has never been accepted as a diagnostic test for CFS and I don't see the new findings changing any of that. The Nevada findings will need to be extended quite a bit further before they are taken seriously as they are very preliminary and as far as I know so far unexplained.

 

[ankaa]

we already know that NK cell function is disturbed in this disease (and several others) and we already have a test for this and have for many years, but it has never been accepted as a diagnostic test for CFS and I don't see the new findings changing any of that. The Nevada findings will need to be extended quite a bit further before they are taken seriously as they are very preliminary and as far as I know so far unexplained.

why isn't NK cell function accepted as a diagnostic? this is so frustrating, and I don't think I've ever heard a skeptic give an explanation.

 

[weyland]

why isn't NK cell function accepted as a diagnostic? this is so frustrating, and I don't think I've ever heard a skeptic give an explanation.

Probably because it lacks specificity for CFS. Low NK function is a finding in other diseases like RA, cancer, chronic infections, even PTSD.

 

[ankaa]

@weyland

right, but why can't they say, Something's clearly wrong, but we don't know what it is... vs Ruling out RA, Cancer, infection, etc and saying, You're fine!

Just because the science isn't there doesn't mean you're fine, and the NK cell function test seems to be a prime example... I know I'm likely preaching to the choir, but it's so irrational & crazy

 

[ankaa]

btw - what is the ideal target for NK cell function? 80-100?

 

[weyland]

btw - what is the ideal target for NK cell function? 80-100?

Probably depends on the lab, but here are the Quest ranges:

Reference Range(s)

Decreased Activity <7 LU30
Normal Activity 7-125 LU30
Increased Activity >125 LU30

 

[weyland]

right, but why can't they say, Something's clearly wrong, but we don't know what it is... vs Ruling out RA, Cancer, infection, etc and saying, You're fine!

Great question, who knows. Medical systems today seem to take their cues from public health officials, and the message from those officials to date is to dismiss and not take this disease seriously. Without getting too deep into conspiracy theories, I have to imagine there is or has been some behind the scenes lobbying from private disability insurance and health insurance companies to the government to facilitate this. Or maybe it's just as simple as an inertia on the part of health officials and the medical field that is just difficult to overcome. The semmelweis reflex can be a strong force.

 

[Seanko]

@Anomie thanks for posting.

 

[Cort]

I'm prepared for both this and the Aussie test to not pan out. I think that a successful biomarker for this disease is going to have to be one that ties closely to the pathoetiology of the disease, and I don't think either of these are it. Unfortunately, because of how long it has taken to understand this disease and how controversial it is, the bar is set extremely high.

Ignoring the fact that both groups findings would need to be independently replicated, preferably by several different groups, I don't think either of these findings are good enough. The Aussie findings are attempting to explain NK cell dysfunction at a slightly lower level. Well, we already know that NK cell function is disturbed in this disease (and several others) and we already have a test for this and have for many years, but it has never been accepted as a diagnostic test for CFS and I don't see the new findings changing any of that. The Nevada findings will need to be extended quite a bit further before they are taken seriously as they are very preliminary and as far as I know so far unexplained.

I have a blog on this coming out. After digging into it it's more exciting than I thought. Stay tuned!

 

[ankaa]

@Cort - what is the diagnostic test? what does it measure? thanks

 

[Not dead yet!]

http://nvcbr.org/2017/02/28/nvcbr-researchers-close-in-on-a-diagnostic-test-for-mecfs-patients/

Lots of exciting research going on these days. I wonder how this compares to what the Australians are doing.

While I understand why they took this direction, I think it will be better as a diagnostic tool, not as a prescription of drugs. I don't think Humira would help us any more than it helps Crohn's patients, and that's the direction it seems to indicate. Luckily we don't have any organs they can remove to "improve" our health.

You don't apply cortisone cream to cellulitis, but that's what autoimmune drugs do, in essence. In ME/CFS disease there are so many secondary infections that something like Humira would just open the door for more, while being exorbitantly expensive. In the worst case scenario it could turn a sickening illness into a deadly one.

why isn't NK cell function accepted as a diagnostic? this is so frustrating, and I don't think I've ever heard a skeptic give an explanation.

To make it worse, they never tell you about the effects of colostrum on NK cell function. They leave that to the "claims" that the FDA doesn't bother to examine, leaving everything up in the air, and providing food for internet arguments. Medicine is too fragmented. Once you get into a non-drug treatment, it's a "Crap shoot" (that's not a curse word, it's a reference to the casino game, Craps). While India is validating Ayurveda, and the Chinese are validating Chinese medicine, we apply the uncertainty principle to our own Eruopean herbalism and non-drug therapies, shaming the users by claiming it is only a placebo effect and they are soft in the head for using it.