Dr Karl Morten - UK researcher based at Oxford University

https://www.youtube.com/watch?v=tMr56HXGgKM

I think he talked about the phage test developed by Leicester university in this talk. Which isn't to say that's what he's gonna use, but if I had to guess it'd be symptomology + that test.

 

https://twitter.com/user/status/1745016013538619718

 

https://twitter.com/user/status/1745183909984223597

 

I personally don’t have confidence in Arminlabs nor in Jack Lambert’s diagnoses.

 

Thanks for sharing. Whilst I share your doubts, what he says on Twitter sounds like a somewhat reasonable approach. I even have some small doubts about the LC cohort (possible BMI problems discussed here), but it will also be nice to see further results for a cohort that has already been studied and displayed complement dysregulation.

 

I wonder are there are Lyme biobanks anywhere that use patients with more solid Lyme diagnoses than Jack Lambert/Arminlabs Lyme patients, that researchers like Karl Morten could use?

Edited to add:
Some info on Arminlabs:
Lack of specificity for other infection testing:
https://www.s4me.info/threads/human...22-armin-schwarzbach-et-al.28644/#post-429095

Also:
https://forums.phoenixrising.me/thr...over-in-german-lyme-clinics.55493/post-925964
Documentary: Undercover in German Lyme Clinics
Short summary:

 

I'm surprised that the German government has done nothing to clamp down on commercial labs selling fake tests to patients like Arminlabs and Celltrend.

 

Why should they clamp down on something like Celltrend? Is there any reason to believe that their tests are inaccurate? From what I can tell their tests are accurate, their results currently just don't have any meaning for LC and/or ME/CFS. Furthermore their tests are supposedly valuable for research and are used by researchers (mainly having shown that ELISA tests for GPCR-aabs aren't indicative of anything). At least for Celltrend the tests don't appear to be "fake tests".

As a comparison I would say: An HIV test for a person that is sick but knows to not have HIV is also not a "fake test".

I think Germany has far larger problems with health insurances having to pay for homeopathic treatments, known to not only be meaningless but even harmful and deadly in cases of serious illness.

 

Yes, Celltrend tests are fake. They measure antibodies that are also found in very similar distributions in normal controls. Therefore, it is highly unlikely that these antibodies cause disease. There are multiple threads about this going back years.

 

That doesn't mean the tests are "fake" as I tried to clarify in my post. They don't yield inaccurate results, they appear to be accurate for what they are measuring (antibodies against GPCR in blood via ELISA). The tests simply imply that based on current research the ELISA tests are meaningless for telling you anything about ME/CFS. Those are completely different things. HIV tests are also meaningless in people with ME/CFS without HIV, that doesn't make these tests "fake tests" because they are still highly accurate, they just don't tell you anything about ME/CFS.

The tests aren't tests to diagnose ME/CFS. They are tests to establish levels of certain antibodies and they do so accurately (the test has been patented worldwide, European patent number 1393076, and validated according to FDA requirements).

Them being advertised for ME/CFS is indeed somewhat scammy (but far from illegal) and it could be considered unethical by Scheibenbogen if she was to advertise them but as far as I know she doesn't do this (she doesn't even use them in her own clinic but only in a few research studies).

 

I think Sid is right here. An 'antibody level' to a protein measured in a particular test is really no more use than an antibody level to a plastic dish measured in another way unless there is some reason to think the binding obtained has some relevance to health or disease. We all have antibodies to everything in a test of one sort or another.

The researchers I talk to by and large steer well clear of tests of this sort.
It is much the same as homeopathy - just dilutions in a different irrelevant situation.

 

I agree that the test is currently meaningless for ME/CFS, but that doesn't mean that the test is inaccurate or a "fake test".

On the contrary I would say having a test can only be more valuable than not having a test as long as the test is accurate. ELISA is generally considered to be highly accurate and is used in autoimmune diseases where similar autoantibodies are known to play a role. So preferring ELISA to say some invalidated animal model also seems sensible and is essentially what has been used to show that these aabs don't seem to play a role in ME/CFS. A test being meaningless is not a sufficient reason for it to be banned.

The GPCR-aab hypothesis is still being heavily followed by some researchers albeit there not being particularly substantial evidence for it and albeit the ELISA tests showing absolutely no abnormalities in the levels. Think of that what you like, but if there would there be no access to such tests this situation could only be worse (with claims along the lines of "they play a role but we can't measure them").

What the tests have told is is that either GPCR-aabs play no role in ME/CFS or that other tests are needed (measuring aabs in tissue or measuring the “functionality” of these aabs, i.e. their avidity to bind to receptors, of course there is no evidence for a different testing procedure being necessary, neither in ME/CFS nor historically for other autoimmune disease as far as I know). Knowing this is still valuable. Furthermore, it seems useful that for example a study looking at the pharmacological activity of such aabs can compare the pharmacological activity via their own testing procedure to the absolute levels from a Celltrend test to understand what is going on. Finally, just because the test is currently meaningless to say anything about ME/CFS that doesn’t mean that for example for other diseases the test would have to be meaningless. I could for example image that in Raynaud’s where ADRA2A have recently been implicated in GWAS such a test could be very useful to further determine where the problem might lie or might not lie.

The situation with ArminLabs and Chronic Lyme might be different. From what I’ve seen in that case the tests are indeed highly inaccurate (not much better than throwing a dice) yielding positive or negative results as one wishes. Being inaccurate (ArminLabs) is completely different to reflecting accurate levels of something that naturally fluctuates in all sorts of populations (Celltrend). Furthermore, in the case of ArminLabs these results are then also used by clinicians to inform a diagnosis, which is clearly horrible.

There is a substantial difference to homeopathy. In Germany where Celltrend is based, homeopathy is paid for by health insurances and unfortunately also recommend by an array of doctors. Especially when someone should be getting a proper treatment instead, this is extremely harmful. Celltrend on the other hand is just a useless test which every person has to pay for with their own money and it isn't recommended by anybody. People purchase all sorts of meaningless nonsense and as long as that's not harmful in any way and not paid for by the taxpayer that's probably not problematic.

 

In the context I disagree. A test that accurately shows binding to plastic in that particular test is clearly worthless anything outside that sort of plastic dish despite being 'accurate'. Antibody binding to proteins is only slightly less irrelevant because we all have antibodies that will bind in some tests to any protein you like. It is as long as a piece of string - literally. Tests of this sort only acquire meaning if they have reliable clinical correlates.

 

I don't disagree that the test is meaningless (at least based on all currently available evidence). But philosophically that is different to something being a "fake test", at least the way I interpret it. A "fake test" in my eyes would be something that is somehow inaccurate or gives results that contradict reality, instead of a result which carries no valuable information. But the tests are not inaccurate they just measure something irrelevant.

If I was to devise a test that with 100% accuracy determines the favorite colour of somebody, then that would also be a meaningless test for ME/CFS, but from what I can tell it would only be a "fake test" if it claimed to be able to say anything about ME/CFS. I don't think Celltrend are legally allowed to make any claims about their test having any use for ME (since such a use can't be established). If Celltrend were to say "this is a test for ME/CFS", it certainly would be a "fake test", but obviously they make no such claims, they just say "this is a test for some antibodies...these are your results".

But I think we've discussed this at sufficient length here. If someone were to ever stumble across this thread, I can only recommend them to not spend their stuff on this nonsense (but I doubt the state has any grounds to forbid it which is what was being discussed in the beginning).

 

So you would say that a test where the patient spits on to copper sulphate and it turns blue would not be a fake test?
The point is that these tests, as far as we know test nothing other than their own results. They are no more tests of anything to do with health than seeing if the sun comes up tomorrow. Most people would call that a fake test.

Perhaps the specific point is that these are not even 'tests for some antibodies'. Antibodies bind artefactually to all sorts of things and without comparisons you may simply be measuring the area of plastic available - I know people who have done research for years on such antibodies - for real.

 

I would say if the test, tests spitting on copper sulphate and it turns blue and all the test claims to do is exactly that it wouldn't be a fake test, just an inherently useless one and I certainly agree, that this test as well as the Celltrend test would show nothing but their own results.

As far as I know a test doesn't have to be able to make predictions to be a "correct test", rather than a "fake test". It simply has to be accurate. I'm also able to detect most diseases with 99% accuracy from any data source of the general population with a simple test. I simply say "they don't have it" and as long as less than 1% of the population has said disease, my test will get it right most of the time. Everyone can say that is a dumb way to test and I can respond "yes, but it is 99% accurate". I would consider that to be a "fake test", even though it makes "accurate predictions" it's no different to flipping a (weighted) coin as it doesn't actually test a hypothesis.

I suppose that's very different to a "medical test" which is supposed to have some meaning, but nobody is claiming Celltrend to be a "medical test" for something (other than it's inherently useless purpose of accurately measuring something irrelevant).

Personally I couldn't care less if Germany would forbid the existence of such a test. But I fear the outcome would be rather negative as it would give researchers even more room to hold on to their pet theories if they legally can't show whether their theory is true because some tests was banned, rather than the tests showing that the hypothesis is incorrect.

That is a valid point I absolutely cannot judge and I would certainly agree that it's a "fake test" if it actually doesn't "test for some antibodies". But isn't this the same technology that is used in say Graves disease to test for TRAb? If for some magical reason Graves disease would stop existing, would these previously useful tests all of a sudden become "fake tests", simply because they don't make predictions anymore?

At least from what I’ve understood you are quite vocal about GPCR-aabs not playing role in ME/CFS, which I certainly agree with especially due to the arguments you’ve presented. Your main argument (apart from therapeutics such as Rituximab not working), if I’ve understood it correctly, for this appears to be that the test from Celltrend indicates that they play no role, which is different to what one sees in other autoimmune disease mediated by some autoantibody. Did you draw these conclusions based on the results of a “fake test”? I would say the test was able to disprove a hypothesis and that’s the only value it has had.

If someone had never investigated GPCR-aabs before and where to conduct a study on those based on some hypothesis and were to use the Celltrend test to measure them, that would seem like a sensible thing for a layman like me to do, rather than me thinking of it as something “fake”. I would be more concerned about a study using some mouse model test, similar to what BerlinCures does, where I can’t even say what the test result means independently of any study results.

 

I don't think anyone is suggesting that its existence should be outlawed, but I'm surprised and concerned that the laws in many countries are not stricter about prohibiting the sale of bogus and/or worthless medical tests. It seems to be a growth industry, which preys upon the vulnerable and benefits nobody other than those who profit from the sales.

 

I most definitely share this concern. Especially since things don’t seem to be improving.

But I also don’t know how this could be easily addressed. Supposedly the founders of Celltrend believed that GPCR-aabs played a role in ME/CFS but couldn’t measure them and as such founded a company that invented an accurate test for these antibodies. Their studies then showed that the test is worthless (meaning that the test has at least had it’s worth in producing this null result). The unfortunate part is that the public can still be scammed into buying this test, but prohibiting it now could even lead to even worse outcomes amongst exactly those people (now believing that they have something, but it can’t be tested for so they begin experimenting with Rituximab or something similar).

In any case, in a country like Germany, where homeopathy is part of medicine, practiced by doctors and paid for by health insurances meaningless tests might be less of an immediate concern and with the whole pharmaceutical and supplement industry being pretty messed up I don’t have much hope in change.

 

On refection, instead of banning bogus and/or worthless tests, I wonder if it might be better if there was a legal requirement for the seller to ensure that the purchaser is informed that test isn't scientifically validated, and for the seller to provide the purchaser with assessment of the test from a specified independent non-profit authority.